Confirmation Number:222752
Event Started: 6/14/2004 8:30AM
THE MEETING WILL BEGIN SHORTLY. THE MEETING WILL BEGIN SHORTLY. THE MEETING WILL BEGIN SHORTLY. WE'LL GET STARTED IN ABOUT A MINUTE.
GOOD MORNING, EVERYONE AND WELCOME TO THE FOURTH MEETING OF THE SECRETARYS ADVISORY COMMITTEE ON GENETICS, HEALTH AND SOCIETY. THE PUBLIC WAS MADE AWARE OF THIS MEETING THROUGH NOTICES IN THE FEDERAL REGISTER, AS WELL AS ANNOUNCEMENTS ON THE WEB SITE, AND LISSERV. FIRST I WANT TO BEGIN BY TAKING NOTE SOME OF CHANGES IN OUR MEMBERSHIP? WE ARE VERY PLEASED TO WELCOME A NEW EX OFFICIO MEMBER, DR. HOWARD ZOOKER WOULD IS DEPUTY ASSISTANT SECRETARY FOR HEALTH AND REPRESENTING THE ASSISTANT SECRETARY FOR HEALTH AND THE DEPARTMENT OF HEALTH AND HUMAN SERVICES? DR. ZOOKER TRAINED IN PEDIATRICS AND HAS HELD FACULTY APPOINTMENTS AT YALE UNIVERSITY SCHOOL OF MED, COLUMBIA COLLEGE OF PHYSICIAN AND SURGEONS CORNELL UNIVERSITY WYLE COLLEGE OF MEDICINE AND THE NATIONAL INSTITUTES OF HEALTH. DR. ZOOKER ALSO SERVED AS A WHITE HOUSE FELLOW, AND WORKED WITH THE CENTER FOR SPACE RESEARCH AT M.I.T. WELCOME. DR. STEVEN GUTMAN, DIRECTOR OF THE OFFICE FOR INVETO DIAGNOSTICS EVALUATION AND SAFETY HAS BEGUN NAMED AS THE NEW EX OFFICIO FOR FDA REPLACING DAVID FIGEL WHO RECENTLY ACCEPTED A POSITION AT NXTD.A. PARTNERS A PRODUCT DEVELOPMENT CONSULTANCY TO THE BIOPHARMACEUTICAL AND MEDICAL DEVICE INDUSTRIES. IN ADDITION, WE WELCOME JOE HACKETT FROM THE FEDERAL DRUG ADMINISTRATION FILLING IN FOR DR. GOODMAN THIS MORNING. DR. PRATT SAMERGION ACTING DIRECTOR FOR THE NATIONAL INSTITUTE OF STANDARDS AND TECHNOLOGY WILL BE REPRESENTING THE DEPARTMENT OF COMMERCE FOR ART MEMITZ WHO IS CURRENT WITH THE NATIONAL SCIENCE FOUNDATION. AND ALSO DR. STEVE FERRO WILL BE SUBSTITUTING. HE'S DIRECTOR OF THE COVERAGE ANALYSIS GROUP AT THE CENTERS FOR MEDICARE AND MEDICAID SERVICES. JUDY YOST WILL BE HERE TOMORROW REPRESENTING CMS. DR. SHERRY HANDS WILL REPRESENT THE DEPARTMENT OF VETERANS AFFAIRS FOR ELLEN FOX. MISS AMY TURNER IS HERE REPRESENTING THE DEPARTMENT OF LABOR, FOR TOM ALEXANDER. WELCOME TO EVERYONE. I ALSO WANT TO EXPLAIN A COUPLE OF ABSENCES IN THE MEMBERSHIP. CHRISTOPHER HOOK WILL BE JOINING US LATER TODAY. HUNT WILLARD WILL JOIN US TOMORROW AND MAY BE ABLE TO PARTICIPATE FOR PART OF TODAY'S MEETING BY PHONE. REED TUXON WILL BE JOINING US US BY PHONE FOR THE REMAINDER OF THE DAY. ERIC LANDER IS ALSO NOT PRESENT. LAST WEEK, WITH GREAT REGRET, ERIC RESIGNED FROM THE COMMITTEE, DUE TO EXTENSIVE COMMITMENTS AND RESPONSIBILITIES AS DIRECTOR OF THE NEW BROGUE INSTITUTE OF M.I.T. AND HARVARD THAT PREVENT HIM FROM HAVING A MORE ACTIVE ROLE ON THE COMMITTEE'S ACTIVITIES. ERIC TOLD ME THAT HE VERY MUCH WISHES TO STAY INVOLVED IN THE COMMITTEE'S WORK AND I PROMISED HIM THAT HE WOULD BECOME A DISTINGUISHED MEMBER EMERITUS AND WE WOULD FEEL FREE TO TAP HIS EXPERTISE AS NEEDED. THE SECRETARY WILL BE APPOINTING A NEW MEMBER TO TAKE ERIC'S PLACE IN THE VERY NEAR FUTURE. BEFORE I REVIEW TODAY'S AGENDA, I WOULD LIKE TO REMIND EVERYONE THAT AT THE END OF THE MARCH MEETING WE SET SOME EXTREMELY AMBITIOUS GOALS IN PREPARATION FOR THIS MEETING. WE PLANNED A NUMBER OF SHORT-TERM ACTIONS INCLUDING SENDING A SECOND LETTER TO THE SECRETARY WITH RESPECT TO NON-DISCRIMINATION LEGISLATION. WE DECIDED THAT THE TRAINING OF HEALTH PROFESSIONALS IN GENETICS WAS A HIGH PRIORITY ISSUE AND AFTER ADDITIONAL FACT FINDING ON GENETICS EDUCATION EFFORTS WE WOULD BE EQUIPPED TO CONSIDER A RESOLUTION REGARDING THESE EFFORTS AT THIS MEETING. AND AN EDUCATION TASK FORCE WILL. WE KNOW THAT THE REPORTING PROCESS IS TIME CONSUMING AND THANK YOU FOR FULFILLING YOUR DUTYS.
NOW WE'LL HEAR AN UPDATE ON THE GENETIC FAIRNESS FROM JOANNE BOFMAN. DR. BOFMAN IS EXECUTIVE VICE PRESIDENT OF THE AMERICAN SOCIETY FOR ASSUMEAN GENETICS. PROTECTION AGAINST GENETIC DISCRIMINATION IS THIS COMMITTEE'S TOP PRIORITY AS WE DETERMINED IN MARCH AND BY PREVIOUS KPONTS WITH THE SECRETARY. WE WERE ENCOURAGED WHEN GNAT BILL S-1033 UNANIMOUSLY PASSED 95-0. FOLLOWING THE MARCH MEETING, WE WROTE A SECOND LETTER TO THE SECRETARY URGING THE CONTINUED PRESSURE BE APPLIED TO IF SILL TATE PASSAGE OF THIS BILL IN THE HOUSE. DR. JOANNE BOFMAN IS HERE TO PROVIDE AN UPDATE ON THE STATUS OF S-1033 IN THE HOUSE AND THE RELATED ACTIVITIES ON THE LEGISLATION BOFMAN.
THANK YOU VERY MUCH. EACH OF YOU IN THE TABLE FOLDERS AND OUTSIDE HAVE THE LIST OF SLIDES. AND WE'LL GO THROUGH THE SLIDES FAIRLY QUICKLY AND THEN GET DOWN TO A CONVERSATION AND A COUPLE OF IDEA THAT PEOPLE MIGHT HAVE. DON'T MISTAKE THIS, THE BAD NEWS SLIDE BEING BLANK FOR THE FACT THAT THERE IS NO BAD NEWS. THE BAD NEWS IS THAT ABSOLUTELY NOTHING HAS HAPPENED IN ANY REAL KIND OF WAY. THAT DOESN'T MEAN THERE HAS NOT BEEN ACTIVITY, BUT THERE HAS BEEN NO REAL MOVEMENT, NOTICEABLE MOVEMENT FORWARD. THE GOOD NEWS, SINCE THE MARCH MEETING IS THE SESSION ISN'T OVER YET. WE STILL HAVE SOME TIME AND WE WILL CONTINUE WORKING FOLKS ON THE HILL ON ANY EVERY WAY THAT WE CAN. THE OTHER PART OF THE GOOD NEWS IS THE MEMBERS WILL BE GOING BACK TO THEIR HOME DISTRICTS AND WE MAY BE ABLE TO CALL ON PEOPLE FROM HOME TO CONTACT THEM AND DISCUSS ISSUES WITH THEIR MEMBERS. DR. McCABE JUST POINTED OUT, IT PASSED 95-0. THERE WERE THREE BILLS THAT WERE BROUGHT OVER TO THE HOUSE, 1910, AND 3636, ACTUALLY FORMALLY INTRODUCED S-1053, NOT YET HAVING BEEN FORMALLY INTRODUCED. ONCE INTRODUCED HR-1910 WAS SENT TO COMMITTEE, AND HR-3636 SENT TO ONE COMMITTEE. NOW THERE ARE APPROPRIATIONS COMMITTEES THAT DO EVENTUALLY SEE SE THESE BILLS ON THE HOUSE SIDE BUT THE COMMITTEES LISTED ON THESE -- ON THIS SLIDE ARE THE COMMITTEES OF REAL ACTION AND DELIBERATION FOR THIS KIND OF BILL THAT INVOLVING BOTH WORK FORCE AND INSURANCE ISSUES. OUR PLANS OR OUR HOPES HAD BEEN TO, IN FACT, GET 1053 TO COMMITTEE, AND THEN NO THE FLOOR OR AROUND THE COMMITTEES AND DIRECTLY TO THE FLOOR. ANOTHER OPPORTUNITY MIGHT HAVE BEEN TO GET 1019 THROUGH SOME COMMITTEES SO THAT 1053 COULD END UP OR THE WORDING IN 1053, THE CONCEPTS IN 1053, COULD BE THE GOAL OF COMPROMISE. WE BEGIN TO BREVE IT IS NOT USEFUL TO HAVE 3636 ON AT JEN DAH IF YOU REMEMBER HOUSE BILL 3636 IS VERY MUCH A SHELL BILL, THAT WOULD INVOLVE -- IT'S NOT REALLY A CHRISTMAS TREE BILL AS IT'S REFERRED ON THE HILL, BUT THIS IS JUST A SKELETAL FRAMEWORK SO THAT AS IT GOES THROUGH THE PROCESS, MEMBERS GET MORE AND MORE WORDING ON IT, AND IT WOULD BE MORE AND MORE COMPLICATED TO, IN FACT, NEGOTIATE THIS THROUGH THE PROCESS. WE'VE HAD SEVERAL MEETINGS BY ADVOCATES AND MULTIPLE MEETINGS WITH THE CHAMBER OF COMMERCE. AND THE CHAMBER OF COMMERCE HAS NOT BEEN TERRIBLY VOCAL ON THIS IN A NEGATIVE WITH. THEY HAVE MADE SOME STATEMENTS ABOUT SOME DEFINITIONS IN -- IN THE WORDING. WE WERE VERY PLEASED, FOR EXAMPLE, TO SEE A WONDERFUL EDITORIAL IN THE WASHINGTON POST BY THE INSURANCE ASSOCIATION THAT SAID, YOU KNOW, THIS GENETIC NON-DISCRIMINATION STUFF IS OUT THERE. WE DON'T BELIEVE THAT THE INSURANCE COMPANIES ARE DISCRIMINATING BUT WE DON'T HAVE A PROBLEM WITH THE CONGRESS TELLING US NOT TO, BECAUSE WE THINK WE DON'T DO IT ANY WAY. SO, IN FACT, THEY BASICALLY SAID IN A VERY POSITIVE WAY, GO AHEAD AND PASS THE BILL. WE'LL DEAL WITH THE DETAILS IN SOME SORT OF WAY. WE THOUGHT THAT MIGHT BE HELPFUL AND MAKE SOME MOVEMENT. IT HAS NOT. IN THE MEANTIME, MANY OF US CONTINUE WITH MEETINGS ON THE HILL, AND WITH MEMBERS OF A VARIETY OF AGENCIES. THESE MEETINGS ARE NOW EVEN BROADENING. WE'RE NOT JUST MEETING WITH STAFF MEMBERS OF KEY COMMITTEE MEMBERS. WE'RE MEETING WITH STAFF MEMBERS AND WITH MEMBERS OF CONGRESS WHO ARE GOOD FRIENDS OF THE STAFF MEMBERS AND POINTBLANK ASKING THEM TO NUDGE THEIR FRIENDS WHO ARE IN THE RIGHT POSITIONS TO GET SOME OF THESE THINGS GOING. WE ALSO CONTINUE TO WORK ON THE LEADERSHIP IN THE SAME KIND OF WAY. EVERY OPPORTUNITY ANY OF US HAS TO MAKE A COMMENT TO ANY OF THE HOUSE LEADERSHIP, OR MEMBERS WHO HAVE INFLUENCE WITH THE HOUSE LEADERSHIP. AND LET ME GIVE YOU THE KIND OF EXAMPLE BEYOND THE FORMAL MEETINGS THAT WE HAVE. I WAS AT A -- I'VE BEEN AT A COUPLE OFS WHERE REPRESENTATIVE CHRIS VAN HOLLAND FROM THE DISTRICT HERE IN MARYLAND THAT REPRESENTS A SIGNIFICANT NUMBER OF SCIENTISTS AND FASAB IS IN HIS DISTRICT AS WELL AND MY CONVERSATION CENTERED AROUND OUR FRUSTRATION ON GENETIC NON-DISCRIMINATION AND HE AGREED WITH ME AND BASICALLY I SAID, LET'S JUST NOT GET FRUSTRATED ANYMORE. IT'S TIME TO GET ANGRY. IT'S TIME TO REALLY GET UPSET ABOUT THIS AND MOVE FORWARD. SO THOSE ARE THE KINDS OF CHANGES THAT WE ARE TRYING TO MAKE WITH OUR FRIENDS, THAT MAY HAVE HAD MEANINGFUL POSITIONS. SINCE THE MARCH MEETING, WE HAVE HAD A LETTER FROM DISTINGUISHED SCIENTISTS TO THE LEADERSHIP, THERE HAVE BEEN A SERIES OF EMAILS THAT HAVE GONE OUT VIA CAP WIZ AND SOME OTHER VENUES TO ALLOW LETTERS OR EMAILS TO GO TO MEMBERS AND, FOR EXAMPLE, I KNOW FROM THE AMERICAN SOCIETY OF HUMAN GENETICS WHEN WE SENT OUT OUR BLAST EMAIL ENCOURAGING ALL OF OUR EMAILS TO EMAIL THEIR MEMBERS, THERE WERE 1100 EMAILS THAT WERE RECEIVED WITHIN ABOUT A 96-HOUR OR 92-HOUR PERIOD OF TIME. SO, IN FACT, WHEN WE HAVE SOME OF THESE WAVES OF ACTIVITY, AND THOSE WERE THE ONLY ONES I COULD COUNT, OTHER ORGANIZATIONS HAVE SOME OF THOSE ACTIVITIES AS WELL. AND WHEN A THOUSAND OR 2,000 EMAILS SHOW UP ON THE HILL, IN A TWO OR THREE-DAY PERIOD, WHAT BASICALLY HAPPENS IS THE STAFF MEMBERS MUST TAKE NOTICE OF THIS. AND WHEN THAT LEVEL OF ACTIVITY HAPPENS THEY MUST REPORT THAT TO THEIR CONGRESSMEN, AND THEN THE DISCUSSION GOES ON IN THE HALLS WHICH MAY BE ANOTHER -- ANOTHER WAY. WE'VE ALSO PREPARED THE ONE-PAGER OF INFORMATION FROM JEANETTE SIFTS THAT WE HAVE GIVE -- FROM THE AGAINCISTS THAT WE HAVE GIVEN, AND WE'RE WORKING ON SOME MORE GOOD STORIES OUT THERE. WE'RE WORKING ON MORE FOLLOW-UP CONTEXT BY INDIVIDUAL CONSTITUENTS. ADDITIONAL STRATEGIES THAT WE WOULD ENCOURAGE EVERYBODY IN THIS ROOM TO PUT FORWARD ARE ADDITIONAL PERSONAL DISCUSSIONS WITH MEMBERS. MAYBE WE'LL JUST BE ABLE TO WEAR THEM DOWN. IF WE CAN'T GET THEM EXCITED ABOUT IT, MAYBE WE CAN AT LEAST WEAR THEM DOWN. AND I KNOW THAT YOU CAN HEAR THE FRUSTRATION IN MY VOICE ON THIS. WE ARE GOING TO BE CONTINUOUSLY REQUESTING PERSONAL CONTACT, ESPECIALLY WHEN THE MEMBERS ARE AT HOME DURING BREAK. AND ENCOURAGE STRATEGIC CONTACT BETWEEN MEMBERS AND LEADERSHIP. WHAT WE HAVE TO DO IS KEEP GENETIC INFORMATION NON-DISCRIMINATION ACT ON THE AGENDA. AS YOU ARE ALL KEENLY AWARE, THERE ARE MEMBER OTHER THINGS ON THE AGENDA OF THE CONGRESS, AND THE STRATEGY THAT WE HAVE TO JUST KEEP PUTTING FORWARD IS THAT ISSUE, WHILE MAYBE NOT AS BIG OR AS FRONT PAGE AS THE INTERNATIONAL OR OTHER NATIONAL EVENTS, IT'S STILL THE RIGHT THING TO DO, AND THIS IS SOMETHING THAT THEY CAN DO FOR THE AMERICAN PUBLIC. AND HOPEFULLY BY COMING TODAY AND VENTING SOME OF MY FRUSTRATION, AT LEAST AMONG FRIENDS AND ALLIES, WE CAN STATE A RENEWED COMMITMENT, AND GAIN ENCOURAGEMENT FROM EACH OTHER TO TRY AND MOVE THIS FORWARD. AT THAT POINT, I WOULD -- I'LL BE HAPPY TO ANSWER QUESTIONS. THERE ARE OTHER MEMBERS IN THE AUDIENCE WHO HAVE BEEN AT SOME OF THESE MEETINGS AND HAVE MET WITH SOME OF THE MEMBERS OF CONGRESS. I WOULD ASK IF ANY OF THEM HAVE SPECIFIC COMMENTS, AND JUST REITERATE THE FACT THAT WHILE ON THE ONE HAND IT IS APPROPRIATE FOR US TO CONTINUOUSLY RECOGNIZE THAT THIS IS NOT THE MOST IMPORTANT ITEM ON THE AGENDA, AND THAT THERE IS -- WE DO HAVE A SPECIAL INTEREST IN THIS, IT IS NOT SELF-INTEREST. IT REALLY IS A BILL FOR THE PEOPLE. AND THAT TO PASS THIS BILL, EVERYBODY COULD GO HOME WITH A WIN.
THANK YOU VERY MUCH, DR. BOFMAN F. YOU COULD JOIN US AT THE TABLE.
SURE.
PERHAPS FOR THIS DISCUSSION AND WHILE YOU ARE DOING, THAT I WILL JUST REMIND EVERYONE, THAT GOVERNMENT EMPLOYEES AND SPECIAL GOVERNMENT EMPLOYEES AND ALL OF US ON THE COMMITTEE WHILE WE WERE ACTING FOR THE COMMITTEE, ARE SPECIAL GOVERNMENT EMPLOYEES. SO WE ARE PRECLUDED FROM LOBBYING THEREFORE THIS IS AN UPDATE FROM SHAG AND OUR DISCUSSION HERE IS REALLY ON HOW WE CAN PROVIDE ADVICE TO THE DEPARTMENT OF HEALTH AND HUMAN SERVICES AND THE SECRETARY.
DR. McCABE.
YES?
I WOULD SAY THAT I AM WELL AWARE OF THAT AND HOPEFULLY PEOPLE UNDERSTOOD THAT THIS WAS THE ACTIVITY OF AN ORGANIZATION HERE IN TOWN AND THE UPDATE ON THOSE ACTIVITIES, AND RECOGNIZE THAT WE ALL WEAR A VARIETY OF HATS, AND THAT INFORMATION AND EDUCATION TO OURSELVES AND TO OTHERS, THAT WE WORK WITH ABOUT THE IMPORTANCE OF INDIVIDUAL CONTACT AND I THINK ONE OF THE ROLES THAT THIS COMMITTEE CAN CONTINUOUSLY HAVE IS EDUCATING INDIVIDUALS ABOUT THE SITUATION, JUST WHERE THINGS ARE, IN FACT.
I APPRECIATE THAT VERY MUCH. WE WERE JUST CLARIFYING THAT THE "US" WAS REFERRING THAT YOU WERE USING, WAS REFERRING TO THE ACTIONS OF THE ASAG AND NOT THE ACTIONS OF THIS COMMITTEE. WE DISCUSSED THE POSSIBILITY IN MARCH THAT FURTHER ACTION BY OUR COMMITTEE MAY BE REQUIRED IN THE EVENT THAT LEGISLATION IS NOT PASSED IN THIS CONGRESS, AND I HATE TO BE PESSIMISTIC BY STATING THAT, BUT I THINK IT'S REALITY. AS A REMINDER WE DISCUSSED ORGANIZING BRIEFINGS FROM INDIVIDUALS WHO FACED GENETIC DISCRIMINATION AND PAID OUT-OF-POCK TOTE KEEP GENETIC INFORMATION OUT OF THEIR MEDICAL RECORDS AND CHOSE TO FORGO TREATMENT, DUE TO FEAR OF GENETIC DISCRIMINATION. I THINK IT'S IMPORTANT TO REMIND OURSELVES THAT THOSE WERE ACTIVITIES THAT WE CONSIDERED AND WE MIGHT CONSIDER FOR THE FUTURE, SHOULD THIS LEGISLATION NOT PASS. WE NOW HAVE SOME TIME TO DISCUSS HOW WE SHOULD PROCEED, AND I WOULD TAKE QUESTIONS OR COMMENTS FROM THE COMMITTEE FOR DISCUSSION, AND PARTICULARLY SINCE WE HAVE DR. BOFMAN AT THE TABLE FOR HER COMMENTS. DR. WENDY?
YES, I JUST WANTED TO ASK IF YOU HAD HAD ANY SUCCESS IN GATHERING UP SOME OF THESE PATIENT STORIES BECAUSE I KNOW YOU HAD MENTIONED AT YOUR LAST PRESENTATION FOR THE COMMITTEE THAT YOU WERE GOING TO BE WORKING ON THAT AND I THINK IT WOULD BE EXTREMELY HELPFUL AT WHATEVER POINT YOU HAVE THOSE.
YES, IN FACT, WE -- AND I'M SORRY I FAILED TO PUT THIS ON, AND IT WAS A VERY IMPORTANT EVENT. THE GENETIC ALLIANCE HAD A -- AND THE GENETIC ALLIANCE IS A VERY ACTIVE MEMBER OF THE COALITION OF GENETIC FAIRNESS HAD A PRESS BRIEFING ON THE HILL, AND, IN FACT, THERE WAS A VERY IMPRESSIVE WOMAN WHO TOLD OF HER CASE. AND AT THAT TIME, WE WERE RE-ENERGIZED TO GATHER SOME CASES. WE HAVE NOT CREATED OTHER FORUMS FOR THE RELEASE OF THAT INFORMATION. THERE'S BEEN SOME VOLLEYING BACK AND FORTH. COALITIONS OF ORGANIZATIONS AND COALITIONS OF COALITIONS TEND TO BE A LITTLE BIT SLOWER IN GETTING SOME THINGS DONE THAN WE MIGHT LIKE SOMETIMES. BUT, IN FACT, WE HAVE ALSO WORKED AT GETTING SOME OF THESE CASES, ENCOURAGING THEM TO TALK DIRECTLY AS CONSTITUENTS TO TALK TO THEIR CONGRESSIONAL REPRESENTATIVES TOO. I MEAN THIS WOMAN AND HER TWO CHILDREN, WHO WERE CARRIERS AND DENIED INSURANCE MADE A VERY IMPRESSIVE PRESENTATION AND CLEARLY INDICATED THE CHALLENGE WAS BEFORE US.
AND WE KNOW ALSO OF CASES WHERE INDIVIDUALS HAVE LOST EMPLOYMENT BECAUSE PRESUMABLY AT LEAST IN ONE CASE THAT I KNOW OF, BECAUSE OF CONCERNS REGARDING INSURANCE. I KNOW THAT CASE APPEARED BEFORE THE EEOC. I DON'T KNOW IF YOU WISH TO COMMENT. PAUL? OKAY.
YEAH, I THINK YOU ARTICULATED THE ISSUE.
OTHER COMMENTS? I WOULD REMIND EVERYONE THAT THE FIRST LETTER THAT THE SECRETARY'S ADVISORY COMMITTEE ON GENETIC TESTING WROTE TO THE SECRETARY WAS ABOUT THAT, THIS ISSUE, THAT OUR FIRST LETTER -- AND THE FIRST LETTER OF THE ARE SACGT TO THE NEW ADMINISTRATION, THE CURRENT ADMINISTRATION WAS ABOUT THIS ISSUE. OUR FIRST LETTER TO THE SECRETARY OF SECRETARIES ADVISORY COMMITTEE ON GENETICS HEALTH AND SOCIETY WAS ON THIS ISSUE AND WE FOLLOWED IT UP WITH ANOTHER LETTER. CLEARLY THIS HAS BEEN A TOP PRIORITY FOR THESE TWO COMMITTEES, AND I WOULD GUESS CONTINUE TO BE. YES?
I'M SITTING IN FOR DR. FRANCIS COLLIN TODAY AT THE GENTLEMEN NOME INSTITUTE AND REPRESENTING THE NIH AND I FEEL I WOULD BE REMISS IF I DIDN'T SAY THAT DR. COLINS IS PROVIDING TECHNICAL ASSISTANCE AND WORKING ON THIS ISSUE, BOTH WITHIN THE ADMINISTRATION AND RESPONDING TO REQUESTS FROM FOLKS ON CAPITOL HILL ABOUT THIS ISSUE AND REALLY THANKS THE COALITION FOR ITS EFFORTS IN THIS AREA. FEELS IT'S VERY IMPORTANT THAT WE GET THIS LEGISLATION PASSED, AS YOU KNOW. AND WE'RE VERY ENCOURAGED BY, YOU KNOW, SOME OF THE PRESS ACTIVITY THIS YEAR, BUT ALSO CONCERNED THAT WE HAVEN'T SEEN SOME ACTION BUT STILL HOPEFUL THAT WE MAY IN THE FUTURE. AND WE'LL CONTINUE TO PROVIDE ASSISTANCE AND WORK ON THE SHISH AS MUCH AS POSSIBLE.
TIM, THANK YOU FOR INTRODUCING YOURSELF. I APOLOGIZE FOR NOT RECOGNIZING YOU IN MY OPENING REMARKS AND YOU'RE REPRESENTING ALLEN GUTMACKER WHO WILL BE SITTING IN FOR FRANCIS COLLINS WHEN HE ARRIVED. -- ARRIVES AND I APOLOGIZE TO SUZANNE FEFUM FOR NOT RECOGNIZING YOU SITTING IN FOR SAM CHAKAR.
YES, JOANNE?
I WANT TO REMIND THE MEMBERS OF THE COMMITTEE THAT THE SITUATION THAT WE'RE IN IS THAT THERE HAS BEEN WRITTEN DOCUMENTATION THE WHITE HOUSE, THE ADMINISTRATION'S SUPPORT OF 1053. IT IS ACTUALLY IN WRITING. IF 1053 CAME TO THE DESK OF THE PRESIDENT, WOE SIGN IT, BASICALLY IS THE WORDING -- HE WOULD SIGN IT IS BASICALLY THE WORDING AS IT'S REFERRED TO. SO ANY COMMENTS THAT WOULD BE -- WOULD BE MADE OR COULD BE MADE TO THE SECRETARY WOULD BE MADE IN A CONTEXT OF ALREADY HAVING DOCUMENTATION FROM THE EXECUTIVE BRANCH IN SUPPORT OF THE LEGISLATION THAT HAS PASSED THE SENATE.
THANK YOU. OTHER COMMENT? YES? EMILY?
ARE THERE SOME SPECIFIC ISSUES, BECAUSE THE LAST TIME WE DISCUSSED THIS, IT SEEMED LIKE THE ISSUE WAS, IS THIS REALLY AN ISSUE? HAVE WE GOTTEN PASSED THAT? IS IT JUST A PRIOR ITIZATION, VERSUS MORE PRESSING CONGRESSIONAL MATTERS AT THIS POINT, OR WHAT IS THE BARRIER THAT WE NEED TO OVERCOME?
EXCUSE ME. I THINK IT IS BOTH HEIGHT AND WIDTH OF THE BARRIER. THERE ARE JUST SO MANY VERY BIG ISSUES GOING ON BUDGETARY ISSUES BEING ONE OF THEM. ALONG WITH EVERYTHING ELSE THAT'S GOING ON, THAT IT IS DIFFICULT TO GET THE MORE FOCUSED ISSUES ON TO A SERIES OF AGENDAS AND AS YOU ARE WELL AWARE, SEVERAL THINGS HAVE HAPPENED, IN FACT, THE CONGRESS SPENT ALMOST ALL OF ITS TIME LAST WEEK ON THE ISSUES AND COMMENTARY ON FORMER PRESIDENT REAGAN. AND SO WHAT ISSUES WERE GOING TO BE DEBATED DURING THE WEEK LAST WEEK, SLID ANOTHER WEEK. SO THAT THE CHALLENGES BOTH HEIGHT AND WIDTH, I THINK.
I WOULD JUST ADD THAT --
PAUL?
I WOULD JUST ADD THAT IT IS ALWAYS IN THE CONTEXT OF THESE DISCUSSIONS, AS I HAVE HEARD AND PARTICIPATED IN THEM, IT IS ALWAYS USEFUL TO REINFORCE AND TO HAVE MORE INFORMATION ABOUT HOW THIS -- YOU KNOW, ABOUT THE REALITY OF THIS PROBLEM, ABOUT THE CONCERNS AND TO DEVELOP CONCERNS -- TO DEVELOP THE ISSUE OF THE CONCERNS OF REAL PEOPLE OUT THERE THE IMPACT ON THE RESEARCH AND SCIENCE, THAT IT IS NOT THE KIND OF ISSUE THAT IS SORT OF ADDRESSED AND THEN MOVE ON TO SOMETHING ELSE. I THINK THAT THAT IS CONSTANTLY AN ISSUE AND CONCERN IN THE BACKGROUND UNDERLYING A LOT OF THINGS.
YES? PLEASE. DEBRA.
SO BEYOND WRITING LETTERS WHICH WE HAVE DONE NOW TWICE TO THE SECRETARY AND THE EXECUTIVE BRANCH REPORT WHAT ARE SPECIFIC FEPS THAT THIS COMMITTEE CAN TAKE -- STEPS THAT THIS COMMITTEE CAN TAKE TO ASSIST ON GETTING THIS THROUGH THE HOUSE?
MY HOPE WOULD BE -- AND WE WILL UTILIZE THE FACT THAT THIS ISSUE WAS ON THE AGENDA OF THIS, A FEDERALLY APPOINTED COMMITTEE TO LOOK AT THESE ISSUES THAT THIS WAS THE TOP PRIORITY AND THAT IN THE FIRST -- AND THE FIRST TOPIC OF DISCUSSION. THAT FACT WILL ALLOW US AND ANYBODY HERE IN THE ROOM TO COMMENT ON THE IMPORTANCE OF THIS ISSUE TO THE COMMITTEE, RESPONDING IN PART TO WHAT PAUL SAID. DOESN'T ENUMERATE INDIVIDUAL ISSUES, BUT IN ANY WAY THAT WE CAN UTILIZE THIS SUPPORT TO BRING FORWARD MORE INDIVIDUALS WHO NEED TO BE SUPPORTED TO GO SEE THEIR CONGRESSMAN OR WHATEVER, AND WE WILL BE WRITING ADDITIONAL LETTERS TO THE LEADERSHIP OF THE CONGRESS ONCE AGAIN. TO TRY AND DO THIS, BUT WE ARE USING JUST ABOUT EVERY VENUE THAT WE KNOW TO USE AT THIS POINT. I'M -- I MUST SAY. AND I DON'T KNOW THAT THERE ARE ADDITIONAL SPECIFIC ACTIONS THAT WE COULD DO AT THIS POINT.
WELL, I JUST WANT TO REMIND THEAFERN WE HAVE DISCUSSED THE POSSIBILITY OF HAVING BRIEFINGS WHERE WE WOULD HAVE INDIVIDUALS APPEAR BEFORE US WHO HAD BEEN THE SUBJECT OF GENETIC DISCRIMINATION, AND I WOULD ASK IF THAT IS SOMETHING THAT THE COMMITTEE WOULD LIKE TO CONSIDER FOR OUR OCTOBER MEETING, SHOULD THIS -- THE HOUSE BILL NOT PASS BY THAT TIME. AGAIN, I DON'T WISH TO BE PESSIMISTIC, BUT I THINK IT'S IMPORTANT FOR US TO PLAN IF WE THEN WERE -- IF THE ACTIONS OF THE COALITION AND OTHERS WERE SUCCESSFUL, THEN THERE WOULD BE NO NEED FOR THAT, AND WE COULD CHANGE THE PLANS FOR THAT BRIEFING AT THAT TIME. BUT -- IS THAT SOMETHING THAT THE COMMITTEE WOULD WISH TO CONSIDER? DEBRA?
I THINK THAT WE SHOULD DO THAT. AND I DON'T KNOW IF FIVE OR TEN MINUTES FOR EACH PERSON WITH A SIGNIFICANT NUMBER, NOT JUST TWO OR THREE PEOPLE, BUNT -- SO WE CAN HAVE AN IMPACT.
OKAY. IS THAT SOMETHING, SARA, THAT THE STAFF COULD WORK ON FOR OCTOBER?
WE CAN CERTAINLY TRY TO DO THAT. AND I GUESS I WOULD ALSO -- IF IT -- IF IT'S APPROPRIATE TO REACH OUT TO THE COALITION, BECAUSE YOU'VE DONE SO MUCH OF THIS ALREADY, AND IF THERE'S A WAY WE CAN AUGMENT THAT WORK, OR COMPLIMENT IT IN N SOME WAY BY BRINGING IT TO THE ATTENTION OF THIS COMMITTEE, AND THEREBY TO THE SECRETARY, WE'D CERTAINLY WANT TO -- AND WOULD DO WHATEVER WE CAN.
IS THERE ANYONE ON THE COMMITTEE, AMONG THE MEMBERS OR THE AD HOC REPRESENTATIVES WHO WOULD DISAGREE WITH THAT PLAN FOR OCTOBER? OKAY. SEEING NO ONE WISH TO COMMENT, THEN I WILL ASSUME THAT WE WILL MOVE FORWARD AND BEGIN PLANNING FOR THAT AT THE END OF THIS MEETING.
AND MAYBE IT WOULD BE HELPFUL IF SOME OF THE MEMBERS, WE COULD FORM A LITTLE TASK FORCE TO HELP ORGANIZE THESE BRIEFINGS AND, YOU KNOW, HAVE YOUR INPUT ON HOW MUCH TIME TO DEVOTE TO IT AND SO FORTH.
ANYONE WISH TO VOLUNTEER OR -- OKAY. BARBARA. DEBRA. AGNES. EMILY. YES, PLEASE. YES SO WE'LL HAVE -- WE WILL CALL ON THE AD HOCS PROBABLY AS WELL, BUT THANK YOU, THE TWO OF YOU FOR VOLUNTEERING, AND PAUL. CERTAINLY HAVE -- YOU HAVE BEEN A LEADER IN THIS, IN THE EEOC. OKAY. WE MAY CALL ON OTHERS OF YOU AS NEEDED, ESPECIALLY AMONG THE AD HOCS. IF ANYBODY HAS BEEN SHY AND WISHES TO VOLUNTEER, AT THE BREAK, PLEASE LET'S HEAR IT NOW. HAD THANK YOU VERY MUCH FOR BRIEFING US DR. BOFMAN AND THANK YOU TORE YOUR EFFORTS THAT CLEARLY FIT WITH THOSE EXPRESSED BY THIS COMMITTEE AND OUR CORRESPONDENCE IN THE PAST. SO NEXT WE'RE ACTUALLY RUNNING JUST A LITTLE BIT AHEAD OF TIME, BUT WE'RE GOING TO HAVE A PRESENTATION ON INFORMATION GATHERED ON EFFORTS IN GENETICS EDUCATION AND TRAINING BY DR. JOHN REED. DR. REED WILL REVIEW THE EDUCATION TASK FORCE'S INFORMATION GATHERING EFFORTS OVER THE LAST THREE MONTHS. I'D LIKE TO THANK JOAN FOR YOUR CHAIRING THE TASK FORCE AS WELL AS KIM ZOMER HUNT WILLARD, BARBARA HARRISON AND AGNES MASTNEY FOR YOUR SERVICE ON THE TASK FORCE. WE APPRECIATE THE TIME AND THE EFFORT THAT ALL OF YOU HAVE PUT INTO GATHERING THE DATA AND PREPARING THE DRAFT RESOLUTION. JOAN? PLEASE PROCEED.
THANK YOU VERY MUCH. AND THANK YOU FOR THE OPPORTUNITY TO PRESENT THE WORK OF THE TASK FORCE. YOU JUST MENTIONED THE NAMES OF THE MEMBERS OF THAT TASK FORCE, BUT I ALSO WANT TO ACKNOWLEDGE THE STAFF WHO SUPPORTED US, AMANDA SIROTT WHO HAS DONE A WONDERFUL JOB OF FACILITATING OUR MEETINGS, MOVING THIS FORWARD AND HELPING TO PUT THIS PRESENTATION TOGETHER. DURING THE DISCUSSIONS OF GENETIC EDUCATION AND TRAINING, AT THE MARCH MEETING, THE COMMITTEE DECIDED TO DRAFT A RESOLUTION TO THE SECRETARY ON THE ISSUE OF GENETICS EDUCATION AND TRAINING, OUTLINING KEY RECOMMENDATIONS IN THIS AREA. TOWARDS THIS END, THEY DECIDED THAT A TASK FORCE SHOULD BE ESTABLISHED WITH THESE CHARGES. TO COLLECT INFORMATION ON THE ACTIVITIES TO HELP HEALTH PROFESSIONAL ORGANIZATIONS, TO ORGANIZE AND FACILITATE A ROUND TABLE DISCUSSION TO BE HELD DURING THIS JUNE MEETING AND TO DRAFT A RESOLUTION TO THE SECRETARY ON GENETICS EDUCATION AND TRAINING. THE COMMITTEE'S REQUEST TO HEAR FORMALLY FROM PROFESSIONAL ORGANIZATIONS IN THE PRIVATE SECTOR ON THEIR ACTIVITIES AND GENETICS EDUCATION AND TRAINING WAS MEANT TO SERVE AS A FOLLOW-UP TO OR ADDITION TO THE SURVEY OF FEDERAL AGENCIES ON THEIR ACTIVITIES AS WELL AS THE PRESENTATIONS AND INFORMATION FROM JOANNE BOFMAN AT THE OCTOBER MEETING. IT WAS FELT THAT THIS INFORMATION WOULD BE USED TO INFORM OUR RESOLUTION AND TO ENSURE THAT ANY RECOMMENDATIONS MADE TO THE FEDERAL GOVERNMENT WOULD BE COMPLIMENTARY TO ACTIVITIES ALREADY ONGOING IN THE PRIVATE SECTOR. WE SOLICITED INFORMATION FROM 26 ORGANIZATIONS. THE ORGANIZATIONS CAN BE DIVIDED INTO THREE CATEGORIES, GENETIC-SPECIFIC ORGANIZATIONS, NINE; HEALTH PROFESSIONALS, EDUCATIONS INVOLVED HEALTH PROFESSIONS PROFESSION ORGANIZATIONS. THEY REPRESENT GENERALISTS SUCH AS A.M.A., THOSE REPRESENTING SPECIALTIES, SUCH AS FAMILY PRACTITIONERS, PEDIATRICIAN, OB-GYN AND THOSE REPRESENTING SPECIFIC CONSTITUENCIES SUCH AS THE NATIONAL MEDICAL ASSOCIATION, AAIP, AND OTHERS. OF NOTE, WE HAD ONLY A MAXIMUM. NINE ORGANIZATIONS IN EACH CATEGORY, AND THIS WAS REALLY TO BE CONSISTENT WITH GUIDELINES SO THAT WE WOULD NOT HAVE TO TURN TO OMB'S REVIEW OF OUR SURVEY IN THE ORGANIZATION. 15 OF THE 26 ORGANIZATIONS RESPONDED, WHICH IS A FAIRLY GOOD RESPONSE RATE FOR A THREE-WEEK PERIOD WHEN THE SERVICE WENT OUT OF NOTE, HOWEVER, WE SHOULDN'T ASSUME THAT THE GROUPS THAT WE DID NOT HEAR FROM DO NOT HAVE IMPORTANT ACTIVITIES IN THIS AREA. HERE'S A LIST OF THE ORGANIZATIONS THAT RESPONDED. YOU WILL BE HEARING FROM SOME OF THESE ORGANIZATIONS DURING THE ROUND TABLE DISCUSSION, AS WELL AS SOME ADDITIONAL ORGANIZATIONS THAT DID NOT GET THEIR RESPONSES IN, IN TIME FOR THIS. IN ADDITION TO HAVING INFORMATION THAT REPRESENTS ORGANIZATIONS, IT'S ALSO IMPORTANT TO NOTE THAT THESE INFORMATION REPRESENTS MULTIPLE SPECIALTIES OR DISCIPLINES. SO THAT THERE'S INFORMATION ON NURSES, GENETICISTS, ALLIED HEALTH PROFESSIONALS, DENTISTS, PHARMACISTS, PHYSICIANS. WITH REGARD TO THIS THE THREE CATEGORIES, I WILL GO THROUGH THEM IN SEQUENCE. THE FIRST IS ON GENETIC-SPECIFIC ORGANIZATIONS. THE COMMITTEE FELT THAT IT WAS IMPORTANT TO SOLICIT INFORMATION FROM ORGANIZATIONS WHO ARE FOCUSED ON THE ISSUES OF GENETICS. THIS PROVIDED THE COMMITTEE WITH THE INFORMATION ABOUT THE, QUOTE, STATE OF THE STATE. WHICH IS CURRENTLY GOING ON WITHIN ORGANIZATIONS THAT HAVE A HIGH AWARENESS OF AND FOCUS ON GENETICS AND GENOMICS. WE ALREADY BENEFITED GREATLY FROM THEIR INPUT ON MANY ISSUES AND APPRECIATE THEIR WILLINGNESS TO CONTINUE PROVIDING THEIR INPUT. WE HIGHLIGHTED THREE IMPORTANT AREAS OF POTENTIAL GAPS IN OUR UNDERSTANDING IS, THESE WERE DIVERSITY, LIFE INSURANCE CERTIFICATION, AND CURRICULA DEVELOPMENT. WE WANTED TO KNOW ABOUT CURRENT INITIATIVES AND ACTIVITIES THAT RELATED TO DIVERSITY IN THE GENETICS WORK FORCE. THAT ENHANCED GENETICS AND GENOMICS CURRICULA AND THAT PROMOTED THE INCORPORATION OF GENETICS AND GENOMIC CONTENT INTO LICENSURE AND CERTIFICATION. DIVERSITY IN THE GENETICS WORKS FORCE IS AN IMPORTANT ISSUE TO THE COMMITTEE. GENETICS IS A FIELD WHERE BOTH CULTURAL DIVERSITY AND CULTURAL COMPETENCY ARE PARTICULARLY RELEVANT. THE IMPACT OF CULTURE ON PERCEPTIONS OF ATTITUDES ABOUT GENETICS AND ALSO IN THE AREA OF DEBATE ABOUT THE SCIENTIFIC BASIS OF RACE AND ITS PLACE IN MEDICINE AND GENETICS. WHAT WE FOUND WAS THAT THESE ORGANIZATIONS WERE INVOLVED IN MANY ACTIVITIES THAT TARGETED BOTH THE PIPELINE, SUCH AS THOSE INVOLVING K THROUGH 12 EDUCATION AS WELL AS THE RECRUITMENT OF INDIVIDUALS FROM DIVERSE BACKGROUNDS INTO GENETIC COUNSELING. THESE EFFORTS ALSO TARGETED MINORITY HEALTH PROFESSIONALS, MINORITIES THAT WOULD ATTEND COLLEGES, HIGH SCHOOL, COLLEGES AND UNIVERSITIES AND ALSO AT THE ORGANIZATIONAL LEVEL, BROAD DIVERSITY IN THROUGH STRUCTURAL FORMS. AND THE UNDERSTANDINGS OF THE COMMITTEE. WITH REGARD TO CURRICULA, IT APPEARS THE GENETIC SPECIFICS GROUP ARE LEADERS AND ACTIVELY ENGAGED IN DISSEMINATION AND OUTREACH EFFORTS FOR OTHER HEALTH PROFESSIONALS. IT'S INVOLVED IN SHORT COURSES, CONFERENCES, ET CETERA, AS WELL AS THE DISSEMINATION OF POSITION PAPERS AND PRACTICE GUIDELINES. THE CORE COMPETENCIES PROVIDE UNIVERSAL GUIDANCE AND THESE CORE COMPEDESTRIANENCEY ISS HAVE BEEN A MAJOR EFFORT ON THE PART OF THIS SPECIFIC ORGANIZATIONS. IT WAS FELT THAT SPECIALLY SPECIFIC COMPETENCIES COULD BE DETERMINED BY PROFESSIONAL SOCIETIES. THE USE OF THE INTERNET TO DISSEMINATE AND SHARE INFORMATION WAS ALSO FELT TO BE CRITICAL. INCREASINGLY, MEDICINE WILL BECOME MORE ELECTRONIC, AND GENETICS, BEING A FIELD THAT CHANGES RAPIDLY AND HAS AN INVOLVED, LARGE AMOUNTS OF INFORMATION BENEFITS FROM THIS CHANGE. IT WAS FELT THAT EDUCATIONAL MATERIALS SHOULD CONFORM TO THIS TREND. COURSES TO TRAIN FACT CULLY IS TO TEACH GENETICS IS A KEY ELEMENT THIS MATCHES UP WITH A BARRIER THAT WAS NOTED BY HEALTH PROFESSIONAL ORGANIZATIONS, FEELING THAT THERE WAS A LACK OF APPROPRIATELY PREPARED FACULTY FOR GENETICS TRAINING AND EDUCATION. LICENSURE, CERTIFICATION, AND ACCREDITATION HAVE THE POTENTIAL TO CHANGE BEHAVIOR, AND INCREASE INTEGRATION OF GENETICS, GENOMICS KNOWLEDGE THROUGHOUT THE HEALTHCARE SYSTEM. ALTHOUGH MANY OF THE AGENCIES DID NOT REPORT A GREAT DEAL OF ACTIVITY IN THESE AREAS SOME OF THE TYPES OF ACTIVITIES THAT THEY WERE ENGAGED IN INCLUDED DECREE DENTALLY PROGRAMS IN GENETICS AND USE OF CORE COMPETENCIES TO HELP INFORM AND DISCUSSIONS OR PROGRAMS THAT RELATED TO LICENSURE AND CERTIFICATIONS AND BIANNUAL GENETICS REVIEW COURSES. THE ISSUE OF LICENSURE CERTIFICATION AND CREDITATION CAN REQUIRE SEVERAL DIFFERENT TYPES OF SOLUTIONS AND SPECIFIC POLICY SOLUTIONS. PART OF THIS IS RELATED TO THE FACT THAT THERE ARE DIFFERENT ACTORS ACROSS THE BOARD HERE. LICENSURE OFTENTIMES WE'RE DEALING WITH STATE. CERTIFICATION WE'RE DEALING WITH SPECIALTY PROFESSIONAL SOCIETIES AND THE FEDERAL GOVERNMENT, SUCH AS WITH CLEA AND ACCREDITATION WE'RE DEALING WITH PRIVATE ORGANIZATIONS WHICH IS ACHO. THE OVERALL RECOMMENDATION FROM THIS GROUP WAS THAT, QUOTE, SHOULD BE STRONG IN OUR APPEALS TO HELPING HHS SECOND TEARY TO ACTIVELY SUPPORT A WADE VARIETY OF ENDEAVORS BASED IN IN BY THE HHS AGENCIES AS WELL AS SEEKING PARTNERSHIP WITH OTHER RELEVANT FEDERAL AGENCYS. THE SECOND CATEGORY OF ORGANIZATIONS INVOLVED IN THE EDUCATION OF HEALTH PROFESSIONALS, FOR THIS CATEGORY, THESE QUESTIONS DEAL WITH CURRICULA DEVELOPMENT FOR AND EDUCATION OF HEALTH PROFESSIONALS. WITH THESE QUESTIONS, WE'RE TRYING TO GAUGE WHERE GENETICS GENOMICS STANDS IN HEALTH EDUCATION ORGANIZATIONS, THAT HAVE A GENERAL, RATHER THAN A SPECIFIC GENETIC FOCUS. QUESTIONS FOR THIS GROUP INCLUDED THOSE ABOUT THE NEED FOR, THE INTEGRATION OF GENETIC AND GENOMICS IN THEIR CURRICULUM, BARRIERS TO THIS, AND CURRENT BARRIERS TO THIS INITIATIVE. WITH REGARD TO THEIR PERCEIVED NEED. THERE'S A NEED TO ACKNOWLEDGE THE GENETIC SCIENCE FOR BOTH GENERALISTS AND SPECIALISTS. THIS POINTS OUT THE TENSION BETWEEN EDUCATING EVERYONE AND MAINTAINING A NICHE PROFESSIONALS. GENERAL PRACTITIONERS HAVE AN IMPORTANT ROLE TO PLAY INTEGRATING GENETICS AND ANY JOMICS IN HEALTHCARE AND SPECIALISTS WHO ALSO PLAY -- GENOMICS IN HEALTHCARE AND SPECIALISTS WHO PLAY A NEW ROLE IN THAT PARA. DIME. DUE TO THE COMPLEXITY OF AND THE SPEED AT WHICH THE FIELD IS DEVELOPING, THERE'S A NEED FOR IMPROVED ACCESS TO KNOWLEDGE THIS WAS CITED BY MANY ORGANIZATIONS. THERE'S A NEED TO BE ABLE TO EVALUATE PRODUCT CLAIMS. THIS COMMENT TIES TO THE COMMITTEE'S INTEREST IN AND FOCUS ON DIRECT-TO-CONSUMER MARKETING AND ADVERTISING. EDUCATION WILL FACILITATE PROVIDERS' ABILITY TO ASSESS THE VALIDITY, EFFICACY AND SAFETY OF VARIOUS NEW PRODUCTS FOR THEIR PATIENTS. THERE'S A NEED TO REDEFINE AND RETASK GENETICS AS AN INHERENT AND OVERARCHING PART OF HEALTH AND TO IMPROVE COMMUNICATION BETWEEN ALL HEALTH PROFESSIONALS AND THE PUBLIC ABOUT HOW GENETICS AFFECT HEALTH. IN KEEPING WITH THE THEME THAT GENETICS IS DEVELOP RANT TO -- RELEVANT TO ALL SPECIALTIES IN MEDICINE AND WILL BE AN IMPORTANT PART OF ALL ASPECTS OF CLINICAL MANAGEMENT OF THE PATIENT FROM PREVENT, DIAGNOSIS AND TREATMENT PERSPECTIVES. HAD THERE WAS A PERCEIVED NEED TO DETERMINE THE LEVEL OF KNOWLEDGE THAT IS NEEDED, AND WHO NEEDS TO THOUGH WHAT, AND WHO SHOULD PROVIDE THAT. ALSO A NEED TO PROVIDE TOOLS FOR LIFE LONG LEARNING. THIS LAST COMMENT HIGHLIGHTS THE FACT THAT GENETICS AND GENOMICS KNOWLEDGE WILL BE RAPIDLY CHANGING AND THEREFORE EDUCATION SHOULD BE A LIFE-LONG PURSUIT. WITH REGARDS TO BARRIERS, IT WAS DIFFICULT TO FIND CURRENT CASE EXAMPLES OR MODELS. THIS COMMENT REPRESENTS AN IMPORTANT THEME RAISED BY SEVERAL ORGANIZATIONS IN RESPONSE TO MANY DIFFERENT QUESTIONS. IN ORDER TO TEACH GENETICS AND GENOMICS MODELS USING CLINICAL RELEVANT MODELS ARE NEEDED. THERE'S A LACK OF TRAINED FACULTY BROADLY COMPETENT IN GENETICS AND GENOMICS AND IT'S EXPECTED THAT THERE WILL BE A LACK OF UNIFORMITY AND THE RATE OF INTEGRATION INTO THE VARIOUS SPECIALTIES IN MEDICINE AND THIS WILL MAKE IT DIFFICULT TO DETERMINE WHO SHOULD BE LEARNING WHAT AND WHEN. OTHER BARRIERS INCLUDE DIFFICULTY IN MOTIVATING OPPORTUNITIES TO LEARN SOMETHING BASED ON THE PROMISE OF ITS, QUOTE, FUTURE IMPORTANCE, AND OVERCROWDED CURRICULA, THAT'S ALREADY STRUGGLING WITH ISSUES OF BASIC SCIENCE AND CLINICAL PRACTICE, AND THE FACT THAT GENETICS BY MANY IS STILL CONSIDERED TO BE AN ESOTERIC FIELD. CURRENT ACTIVITIES FROM THE HEALTH PROFESSIONAL EDUCATIONAL ORGANIZATIONS INCLUDE MEMBERSHIP IN IN NISHPEG INTEGRATING THOSE CORE COMPETENCY BY NISHPEG OR THE SPECIAL DISCIPLINES AND A SURVEY OF FAG CULLITY COMPETENCY IN AND UNDERSTANDING OF GENETICS AND GENOMICS. WITH REGARD TO CURRENT ACTIVITIES ONE ORGANIZATION IS SPONSORING RELEVANT LEGISLATION THAT OF THE ALLIED HEALTH PROFESSIONS, THAT WOULD HELP SUPPORT CURRICULA DEVELOPMENT IN THE AREA OF GENETICS AND GENOMICS. OVERALL, IT WAS FELT THAT CULTURAL COMPETENCY WAS ADDRESSED BROADLY WITHIN THE CONTEXT OF OUTREACH TO UNDERSERVED POPULATIONS AND THERE WAS NO SPECIFIC FOCUS IN THE AREA OF GENETICS. RECOMMENDATIONS FROM THESE ORGANIZATIONS INCLUDED SCHOOLS AND PROFESSIONAL ORGANIZATIONS MUST PROVIDE LEADERSHIP IN PREPARING THE NEXT GENERATION OF HEALTH PROFESSIONALS IN GENETICS. THE PRIMARY ROLE OF PREPARING HEALTH PROFESSIONALS LIES WITH THE SCHOOLS AND PROFESSIONAL ORGANIZATIONS, NOT WITH THE FEDERAL GOVERNMENT. CONTINUING EDUCATION IS NEEDED TO TRAIN THE TRAINER, AND THIS SPECIFICALLY REFERS TO HELPING CLINICIANS DETERMINE -- TO DETERMINE WHEN TO REFER, HOW TO OBTAIN INFORMATION ABOUT GENETICS RESEARCH STUDIES AND WAYS TO DISCUSS RESEARCH OPTIONS WITH PATIENTS. MORE FUNDING IS NEEDED TO SUPPORT TRAINING AND EDUCATION IN GENETIC TECHNOLOGIES AND FACILITATE THE INCORPORATION OF NEW KNOWLEDGE AND SKILLS. WITH REGARD TO THE LAST SET OF ORGANIZATIONS, THE HEALTH PROFESSIONAL ORGANIZATIONS RESPONSES, THE COMMITTEE'S REASON THAT IT WAS ALSO IMPORTANT TO GATHER INFORMATION FROM UMBRELLA ORGANIZATIONS, IS FOCUSED ON SPECIFIC HEALTH PROFESSIONAL DISCIPLINE. THESE RESPONSES PROVIDE THE COMMITTEE WITH USEFUL INFORMATION ON THE RELATIVE IMPORTANCE OF GENETICS, TO ORGANIZATIONS GRAPPLING WITH MANY OTHER EQUALLY IMPORTANT ISSUES. THE INFORMATION MAY ALSO BE AN INDICATOR OF HOW GENETICS AND GENOMICS IS PERCEIVED WITHIN THE HEALTHCARE SYSTEM GENERALLY. THE TYPES OF QUESTIONS THAT WERE ASKED OF THIS GROUP INCLUDE: CHARACTERIZING THE NEED FOR INTEGRATION OF GENETICS AND GENOMICS, WHAT TYPES OF ACTIVITIES OR INITIATIVES THEY HAVE CURRENTLY ONGOING AND IN HERE WE ASK SPECIFICALLY ABOUT PARTNERSHIPS, ABOUT INTERDISCIPLINARY EFFORTS, ABOUT EDUCATIONAL PRODUCTS AND ABOUT OUTCOMES, WHAT HAS BEEN EVAL WAITED AND THE IMPACT. WE ASKED THEM SPECIFICALLY ABOUT STEPS THEY WERE TAKING WITH REGARDS TO DIVERSITY, ABOUT THEIR PARTICULAR CONCERNS AND RECOMMENDATIONS THAT THEY WOULD LIKE OUR COMMITTEE TO MAKE. WITH REGARDS TO THEIR NEEDS, THEY FELT THAT ALL HEALTH PROFESSIONALS NEED A STRONG KNOWLEDGE BASE IN GENETICS AND GENETICS TESTING. IDENTIFYING CLINICALLY RELEVANT EXAMPLES OF GENETICS AND GENOMICS WOULD HELP TO ADDRESS THE NEED OF HOW GENETICS INTERFACES WITH PRACTICE. YOU HEAR A RECURRING THEME OF THE NEED FOR APPLICATION. THERE'S A NEED TO UNDERSTAND HOW THIS RELATES TO PRACTICE. IF A NEED TO HELP PROFESSIONAL KEEP UP TO DATE ADVANCES IN GENETICS, THIS IS BROUGHT BY MANY HEALTH PROFESSIONAL ORGANIZATIONS IN TERMS OF THE NEED FOR ACCESS TO NEW KNOWLEDGE. AGAIN, WE HAVE THE ISSUE OF LIFE LONG LEARNING, KEEPING UP TO DATE. IN TERMS OF CURRENT ACTIVITIES, THE HEALTH PROFESSIONAL ORGANIZATIONS ARE UNDERTAKING A BROAD ARRAY OF ACTIVITIES RELATED TO GENETICS EDUCATION AND TRAINING. SOME ARE USING TRADITIONAL TOOLS FOR CONSENSUS BUILDING AND DISSEMINATION. YOU SEE A WIDE RANGE FROM CME EDUCATIONAL SESSIONS TO WEB-BASED EDUCATIONAL TOOLS TO NEWSPAPER ARTICLES, JOURNAL ARTICLES, SYMPOSIA, AND ACROSS THE BOARD. WITH REGARDS TO THEIR CURRENT ACTIVITIES AND INTERDISCIPLINARY ACTIVITY, SEVERAL OF THE ORGANIZATIONS ARE PARTNERING WITH OTHER FEDERAL AGENCIES TO CREATE SPECIALTY SOCIETIES, MEDICAL SOCIETIES, NONPROFIT ORGANIZATIONS AND PRIVATE COMPANIES AND THE MAJORITY OF THE ORGANIZATIONS REPORT THAT THEIR ACTIVITIES ARE INTERDISCIPLINARY IN NATURE. WITH REGARDS TO OUTCOME AND EVALUATION, IT WAS FOUND THAT MOST OF THE ORGANIZATIONS MEASURED THEIR OUTCOMES OR EVALUATION BASED ON INCREASING INTEREST OR CONTINUED INTEREST IN ISSUES RELATED TO GENETICS AND GENOMICS. THIS WAS GATHERED BY LOOKING AT NUMBERS WHO ATTENDED GENETIC SESSIONS AT NATIONAL MEETINGS, HITS TO GENETIC WEB SITES CME IS CERTIFICATES AND DISTRIBUTION OF EDUCATIONAL MATERIALS. CURRENT ACTIVITIES RELATED TO DIVERSITY TAKE MANY FORMS FROM COMMUNITY OUTREACH, CAREER DEVELOPMENT, EDUCATION, RESEARCH, ADVOCACY AND ORGANIZATIONAL POSITION STATEMENTS. CONCERNS OF THIS LAST GROUP OF ORGANIZATIONS, THE SCIENCE UNDERLYING ISSUES OF RACE IN MEDICINE NEEDS TO BE EXAMINED AND INTEGRATED INTO GENETICS EDUCATION AND TRAINING. ISSUES OF RACE AND GENETICS NECESSITY SPECIAL CONSIDERATION AND TREATMENT IN THE EDUCATIONAL SETTING. AWARENESS OF THESE ISSUES IS AN IMPORTANT PART OF A HEALTH PRACTITIONER'S CULTURAL COMPETENCY. FOR MANY PHYSICIANS, GENETICS DOES NOT HAVE AN IMMEDIATE DAILY CLINICAL APPLICABILITY. THIS COMMENT RELATES TO THE NEED TO UNDERSTAND HOW GENETICS INTERFACES WITH PRACTICE, AND THE BARRIERS CAUSED BY THE DIFFICULTY IF FINDING CASE EXAMPLES OR MODELS IN GENETICS AND GENOMICS CITED BY HEALTH PROFESSIONAL ORGANIZATIONS PREVIOUSLY. TO QUOTE ONE PERSON GENOMICS IS SPINACH. EVERYBODY KNOWS IT IS GOOD FOR THEM, BUT NOBODY LIKES IT. GENETICS EDUCATION MUST BE REPRESENTED THROUGHOUT THE ENTIRE CONTINUUM OF MEDICAL EDUCATION. THERE IS A NEED FOR TOOLS THAT FACILITATE THIS LIFE-LONG LEARNING AND A NEED TO KEEP PROFESSIONALS UP TO DATE. ADDITIONAL CONCERNS, EDUCATIONAL PROGRAMS MUST HAVE A FOCUS ON PEDIATRICS AND NOTEICS AND PHYSICIANS PREFER INTERACTIVE LEARNING WITH CASE STUDIES. THE EFFECT OF THE NURSING SHORTAGE ON PATIENT EDUCATION AND INFORMED CONSENT WAS ALSO RAISED. IT WAS FELT THAT THIS POINT MIGHT RAISE THE BROADER QUESTION OF THE IMPACT WITH THE EMPHASIS EFFICACY MIGHT HAVE ON INTERGAS STATION OF A RATHER TIME INTENSIVE AND COMPLEX ISSUE LIKE GENOMICS. RECOMMENDATIONS FROM THE THIRD SET OF ORGANIZATIONS, ONGOING CONTINUING EDUCATION SHOULD BE THE RESPONSIBILITY OF A LICENSING AGENCY AND PROFESSIONAL ORGANIZATION. THE DEVELOPMENT OF PROFESSION-SPECIFIC MATERIALS SHOULD BE LEFT TOO TO THE HEALTH PROFESSIONS AND SUPPORT FOR GENETICS EDUCATION PROGRAM WOULD BE AN APPROPRIATE ROLE OF THE GOVERNMENT. FURTHER RECOMMENDATIONS, FUNDING IS NEEDED FOR NEW PROGRAMS THAT FEATURE EDUCATIONAL PRACTICES KNOWN TO CHANGE PHYSICIAN BEHAVIOR. THIS INCLUDES AREAS SUCH AS LEARNING BASED ON PERCEIVED NEED AND INTERACTIVE LEARNING. AND EFFORTS IN GENETICS EDUCATION MUST EXTEND TO RELATED AREAS MOLECULAR MEDICINE AND BENCHMARKS SHOULD BE INSTITUTED TO INFORM AND ASSESS THE BIDIRECTIONAL IMPACT OF TRANSLATIONAL RESEARCH, I.E., FROM BENCH TO BEDSIDE, BEDSIDE TO BENCH. RECOMMENDATIONS, EDUCATION AND TRAINING SHOULD ADDRESS POPULATION-BASED GENETIC VARIATIONS AND ITS UTILITY IN INDIVIDUALIZED MEDICINE, THE IMPACT OF GENETIC POLYMORPHISM ON WHAT IS NORMAL, IN QUOTES, AND THE SCIENTIFIC RELEVANCE AND MINORITY PARTICIPATION IN CLINICAL TRIALS TO THE QUALITY OF HEALTHCARE AND EMERGING ERA OF GENOMIC MEDICINE AND THE DGIC IMPORTANCE OF OBTAINING A GOOD AND COMPLETE FAMILY HISTORY ON ALL PATIENTS. TURNING NOW TO OUR SECOND CHARGE WHICH RELATES TO THE EDUCATIONAL ROUND TABLE. THE PURPOSE AND GOALS OF THIS WERE TO DISCUSS IN DETAIL ORGANIZATIONS' EFFORTS IN AND ATTITUDES ABOUT GENETICS EDUCATION AND TRAINING AND TO ADD TO THE INFORMATION ALREADY PROVIDED IN THE SURVEYS TO IDENTIFY KEY CONCERNS IN BARRIERS WITH RESPECT TO THESE ISSUES IN THE ORGANIZATIONAL LEVEL, AND TO HELP INFORM ANY RESOLUTIONS COMING FROM THIS COMMITTEE TO THE SECRETARY. THE ORGANIZATIONS THAT WILL BE INVOLVED IN THIS ROUND TABLE ARE LISTED HERE. REPRESENTATIVES INTRODUCED TO YOU FORMALLY LATER. IN THE THIRD AREA WE WERE ASKED TO DEVELOP A DRAFT RESOLUTION THAT COULD GO TO THE SECRETARY WITH REGARDS TO EDUCATION AND TRAINING. THE PURPOSE IS TO ARRIVE AT A CONSENSUS OF THE COMMITTEE ON THE ISSUE OF EDUCATION AND TRAINING TO CONVEY THIS CONSENSUS TO THE SECRETARY AND TO MAKE RECOMMENDATIONS OR POSSIBLE STEPS TO ADDRESS THIS IMPORTANT ISSUE. THE CONCLUSIONS THAT WE HAD WERE THE GENOMICS CAN IMPROVE HEALTH, THAT ADEQUATE EDUCATION AND TRAINING IN GENETICS AND GENOMICS IS ESSENTIAL TO INTEGRATING GENETICS INTO THE HEALTHCARE SYSTEM, AND ACCESS IS CONTINGENT UPON AFFECTED INTEGRATION. ADDITIONALLY, THE EDUCATION PROFESSIONAL ORGANIZATIONS IDENTIFIED THE FOLLOWING NEEDS. THERE'S A NEED FOR INVENTORIED WIDELY, EDUCATIONAL MODELS THAT USE SUCH APPLICATION, A BROAD GENETICS AND GENOMICS AND APPROPRIATELY TRAINED FACULTY AND TRAINING PROGRAMS THAT DISCUSS GENOMICS AND PUBLIC POLICY. WITH REGARDS TO OUR TASK FORCE EDUCATION RESOLUTION RECOMMENDATIONS, THERE WERE SIX. WE DECIDED THAT WHILE GENETICS IS IMPORTANT AND SPECIAL, AND THAT IS IT RELEVANT TO ALL AREAS OF MEDICINE AND HEALTHCARE, IT WOULD BE INAPPROPRIATE TO SINGLE IT OUT IN THE EDUCATIONAL SETTING. RATHER IT SHOULD BE INTEGRATED THROUGHOUT ALL STAGES OF LEARNING, IN ALL SETTINGS AND THROUGHOUT ALL DISCIPLINES. THERE'S A NEED TO SUPPORT PROGRAMS THAT ENHANCE KI VERSEITY AMONG AND CULTURAL COMPETENCY OF HEALTH PROFESSIONS. WE NEED TO ENGAGE OTHER STAKEHOLDERS IN THE PROCESS OF CATALOGING GENOMICS APPLICATIONS TO CLINICAL MEDICINE AND PUBLIC HEALTH THIS SHIRD RECOMMENDATION ADDRESSS THE CONCERN ABOUT THE LACK OF CLINICALLY RELEVANT GENOMICS AND NOTEICS APPLICATION. FOURTH, WE NEED TO SUPPORT PROGRAMS THAT TRAIN THE TRAINERS AND GENOMICS AND GENETICS EDUCATION. ADDRESSING THE IDENTIFICATION OF BARRIERS TO LACK OF PROFESSIONALS TRAINED TO TEACH GENETICS. FIFTH, WE NEED TO PROMOTE KMUJS E COMMUNICATION BETWEEN FACULTY TO ENHANCE USE OF GENOMICS EDUCATIONAL MODELS AND LAST TO ENCOURAGE INCORPORATION OF GENETICS AND GENOMICS INTO THE CERTIFICATE FITION R FITION AND LICENSURE PROCESS. THANK YOU. -- CERTIFICATION AND LICENSURE PROCESS. THANK YOU.
THANK YOU VERY MUCH DRRKS REED. AT THIS TIME, LET'S TAKE A 15-MINUTE BREAK. THE MEMBERS OF THE COMMITTEE AND OUR EX OFFICIOS ARE INVITED TO ENJOY THE REFRESHMENTS HERE AT THE FRONT OF THE ROOM. FOR MEMBERS OF THE PUBLIC REFRESHMENTS' BEAVERABLES ARE AVAILABLE AT THE GIFT SHOP NEAR THE HOTEL LOBBY. AND WE WILL RECONVENE IN 15 MINUTES. SO THAT WILL BE AT ABOUT FIVE OF THE HOUR. THANK YOU.
OKAY.
IF EVERYBODY COULD TAKE YOUR SEATS, PLEASE. WE'RE NOW GONNA PROCEED WITH A ROUND TABLE DISCUSSION WITH, WITH THE EIGHT ORGANIZATIONS ON THEIR EFFORTS IN EDUCATING AND TRAINING HEALTH PROFESSIONALS IN GENETICS. THE PURPOSE OF THIS ROUND TABLE DISCUSSION IS TO EXPLORE IN GREATER DEPTH THE EFFORTS OF KEY PROFESSIONAL SOCIETIES AND EDUCATIONAL ORGANIZATIONS TO ENHANCE KNOWLEDGE OF HEALTH PROFESSIONALS IN GENETICS AND GENETIC TECHNOLOGY AND TO IDENTIFY WHAT STEPS, IF ANY, NEED TO BE TAKEN TO ADVANCE THESE EFFORTS. AT THIS TIME, I'D LIKE TO INVITE OUR ROUND TABLE PARTICIPANTS -- WELL, YOU'VE ALREADY JOINED US AT THE TABLE, SO I DON'T NEED TO EXTEND THAT INVITATION, AND I'LL NOW TURN OVER THE GAVEL TO DID REED -- DR. REEDE2, WHO WILL LEAD THE DISCUSSION AND INTRODUCE THE ROUND TABLE MEMBERS WHO HAVE BEEN INTRODUCED THEMSELVES.
THANK YOU. AND THANK YOU VERY MUCH TO THOSE WHO ARE PARTICIPATING IN THIS ROUND TABLE DISCUSSION. I'M GOING TO INTRODUCE IN ORDER. BOUGHMAN, THE EXECUTIVE VICE PRESIDENT OF THE AMERICAN SOCIETY OF HUMAN GENETICS AND MEDICAL JET CRIST AND ADJUNCT PROFESSOR IN THE PEDIATRICS AND OBSTETRICS AND JIN ECOLOGY SCIENCES AT THE UNIVERSITY OF MARYLAND. JOE McNERNEY, THE DIRECT YOUR OF THE COALITION FOR EDUCATION IN GENETICS. WHAT HE ALSO IN THE PAST THE DIRECTOR OF THE FOUNDATION FOR GENETICS EDUCATION AND COUNSELING. FELISA LASHLEY, DR. LASHLEY IS DEAN OF THE COLLEGE OF NURSING AT RUTGERS, STATE COLLEGE. SHE WAS PREVIOUSLY A PROFESSOR AT SOUTHERN ILLINOIS SCHOOL OF NURSING AND PEDIATRICS SCHOOL OF MEDICINE. DON ELAINE, WHO'S THE GENETIC COUNSELOR FOR THE CHILDREN'S HOSPITAL IN MILWAUKEE, A GENETIC COUNSELOR AND CLINIC COORDINATOR FOR THE CANCER GENETIC SCREENING PROGRAM AT THE HOSPITAL IN MILWAUKEE AND IS CURRENT PRESIDENT OF THE NATIONAL SOCIETY OF GENETIC COUNSELORS. JUDITH LEWIS. DR. LEWIS IS THE PROFESSOR IN MATERNAL CHILD NURSING IN THE DEPARTMENT THE VIRGINIA COMMONWEALTH UNIVERSITY AND ALSO DIRECTOR OF INFORMATION TECHNOLOGIES FOR THE SCHOOL OF NURSING. GEORGIA DUNCEON, DR. DUNCEON IS PROFESSOR AND CHANCE -- CHAIR OF MIKE BIOLOGY AT THE COLLEGE OF MEDICINE AND FOUNDING DIRECTOR OF THE NATIONAL HUMAN AGREE NOME CENTER AT HOWARD UNIVERSITY. SHE IS HERE REPRESENTING THE NATIONAL MEDICAL ASSOCIATION. TOBY CITRIN, DIRECTOR OF THE OFFICE OF COMMUNITY-BASED PUBLIC HEALTH AT THE UNIVERSITY OF MICHIGAN SCHOOL OF PUBLIC HEALTH, AND DIRECTOR OF THE MICHIGAN CENTER FOR GENOMICS AND PUBLIC HEALTH, EACH HERE REPRESENTING THE ASSOCIATION OF SCHOOLS OF PUBLIC HEALTH. AND MIKE@WHITCON. SHE IS IAN ON -- SENIOR VICE PRESIDENT AT THE ASSOCIATION OF MEDICAL COLLEGES, AND IN THE PAST TWO TERMS OF DEAN, ONE AT UNIVERSITY OF MISSOURI COLUMBIA AND THE OTHER AT THE UNIVERSITY OF WASHINGTON. THANK YOU ALL FOR BEING HERE.
I'D LIKE TO OPEN IT UP WITH A QUESTION FOR ALL OF YOU. IF YOU COULD SPEAK A LITTLE BIT TO YOUR KEY ISSUES, CONCERNS, PROBLEMS WITH RESPECT TO GENETICS EDUCATION TRAINING FROM THE PERSPECTIVE OF YOUR ORGANIZATION. AND HERE, IF YOU COULD IN PARTICULAR REFER TO GAPS IN CURRENT GENETIC EDUCATION OF HEALTH PROFESSIONALS. WOULD ONE OF YOU LIKE TO TAKE....
I'LL TAKE A STAB AT IT, AND I SHOULD SAY INITIALLY THAT TO MY KNOWLEDGE, THE ASSOCIATION OF SCHOOLS OF PUBLIC HEALTH HAS NOT A CURRENT SURVEY OF WHAT THE SCHOOLS IN FACT ARE DOING IN INCORPORATING GENOMICS INTO EDUCATION, BUT WE DID HAVE A GRADUATE STUDENT OF OURS THROUGH A SURVEY BASED ON WEBSITES OF ALL 34, 35 SCHOOLS OF PUBLIC HEALTH, TO SEE THE EXTENT TO WHICH GENOMICS FINDS ITS WAY INTO PROGRAMS, AND I SHARED THAT SURVEY WITH --. [ INDISCERNIBLE ]
AND INTERESTINGLY ENOUGH, OF THE 35 SCHOOLS, TEN OF THE SCHOOLS HAVE DEBAD -- DEBATING WHETHER THEY NOW HAVE GENETIC PROGRAMS. MANY OF THESE ARE REALLY RESEARCH-RELATED AS OPPOSED TO TEACHING-RELATED. 12 SCHOOLS ARE OFFERING COURSES. VERY FEW SCHOOLS ARE IDENTIFYING -- WHAT THEY ARE TEACHING. SO THE CURRENT SEEN EFFECT IN EDUCATION SUGGESTS THAT THE LARGE MAJORITY OF SCHOOLS OF PUBLIC HEALTH REALLY HAVE NOT INCORPORATED GENETICS AND GENOMICS INTO THE CONTENT OF THE EDUCATION, PEOPLE GOING INTO PUBLIC HEALTH. THIS, IN SPITE OF THE FACT -- OR MAYBE LEADING TO THE FACT -- THAT THE INSTITUTE OF MEDICINE'S REPORT ON THE TEACHING OF PUBLIC HEALTH IN 2003, SCHOOLS OF PUBLIC HEALTH MAKES A STRONG PLEA FOR GENOMICS BEING ONE OF THE EIGHT CONTENT AREAS THAT ULTIMATELY THE PUBLIC HEALTH WOULD TEACH. NOW, SPECIFIC REFERENCE TO YOUR QUESTION, WHAT ARE THE BARRIERS, THE VERY FACT THAT THE RECOMMENDATION OF THE IOM REPORT, LRTS, IS THAT THESE EIGHT CONTENT AREAS SHOULD NOW BE INCORPORATED INTO THE TEACHING OF PUBLIC HEALTH RATHER THAN REPLACING WHAT IS NOW BEING TAUGHT, SUGGESTS AN ADD-ON TO WHAT'S ALREADY SEEN BY MANY IN THE SCHOOLS AS AN OVERLOAD OF INFORMATION TO BE TAUGHT TO STUDENTS. NOW, THE ANSWER TO THAT QUESTION OF COURSE IS INTEGRATION, AND IN FACT, THE PUBLIC HEALTH REPORT SUGGESTS THAT GENOMIC NEEDS TO BE INTEGRATED INTO AN OVERALL ECK LOGICAL VIEW OF CLAUSEATION OF HEALTH AND DISEASE, BUT THIS SUGGEST SUGGESTS THAT PEOPLE TEACHING BIOSTATISTICS AND POLICY AND ENVIRONMENTAL HEALTH AND HEALTH BEHAVIOR SHOULD ALL INCORPORATE GENOMICS IN WHAT THEY TEACH. WHEN MOST OF THE PEOPLE WHO TEACH THESE SUBJECTS DO NOT UNDERSTAND THE ROLES THAT GENOMICS PLAYS IN THESE AREAS AND THE FIELD HAS BEEN SO FAST-MOVING THAT IT IS HARD TO HAVE PEOPLE WHO SPECIALIZE IN WHAT ARE NOW IDENTIFIED AREAS OF PUBLIC HEALTH TO KEEP IN TOUCH. SO MOST OF THE SCHOOLS THAT SAY THEY ARE TEACHING GENETICS, THESE 10 OR 12, HAVE SPECIFIC DISCREATE COURSES THAT ARE TYPICALLY ELECTED SO THAT BY FAR, THE STUDENTS GOING THROUGH SCHOOLS OF PUBLIC HEALTH, THEY ARE RECEIVING LITTLE OR NO GENETICS EDUCATION. SO, THE ABILITY TO HAVE PEOPLE WHO KNOW HOW TO TEACH INCORPORATING GENOMICS INTO THE BROADER VIEW OF CLAUSEATION OF HEALTH AND DISEASE, THIS WILL BE A VERY MAJOR BEARER. THE ISSUE OF TIME TO INCORPORATE THIS INTO WHAT'S ALREADY A VERY BUSY CURRICULUM IS YET ANOTHER. AND OF COURSE RELATED TO THAT IS THE FACT THERE'S NO REQUIREMENT TO INCORPORATE GENETICS AND THAT WOULD BE THE ACCREDITING BODY ARE INCORPORATED INTO THE DRAFT RESOLUTION THAT YOU PUT TOGETHER. SO, THESE TO ME ARE SOME OF THE VARIOUS -- I WANT TO ADD ANOTHER BEARER WITH RESPECT TO THE ONE ASPECT OF TEACHING, WHICH IS THE ETHICAL, LEGAL, SOCIAL ISSUES. THE VERY TEACHING OF ETHICS IN SCHOOLS OF PUBLIC HEALTH IS A HOT TOPIC THESE DAYS. MOST SCHOOLS DO NOT REQUIRE TRAINING IN ETHICS AS A CONDITION OF GETTING A MASTERS DEGREE IN PUBLIC HEALTH. SO, IF ETHICAL, LEGAL, SOCIAL ISSUES RELATED TO GENETICS ARE TO BE PART OF THE REQUIRED CURRICULUM, WHICH MANY OF US WHO ARE IN THIS FIELD REALLY SHOULD BE, THIS THEN PRE-SUPPOSES THAT ETHICS ITSELF IS A PART OF THE GENETICS CURRICULUM -- OF THE CURRICULUM OF PEOPLE GOING TO SCHOOLS OF PUBLIC HEALTH. THIS BECOMES PART OF A BROADER ISSUE. SO THAT'S A SUMMARY OF SOME OF THE ISSUES --. [ INDISCERNIBLE ]
THANK YOU VERY MUCH.
I'M HERE REPRESENTING THE NATIONAL BOYS FOR BACHELORATE ENTIRE DEGREE IN NURSING PROGRAMS ACROSS THE COUNTRY AND MEMBERS CON CYST OF RESPECTORS F THOSE PROGRAMS THROUGHOUT THE COUNTRY. THEY HAVE HAD A FEW EFFORTS IN RECOGNIZING GENETICS THROUGH SPECIAL PARTS OF THE NURSING CURRICULUM. ONE OF THE FIRST WAS TO INCORPORATE SOME KNOWLEDGE OF GENETICS IN THE 1998 ESSENTIALS OF BACK REPORT DOCUMENTATION THAT WAS PUT OUT BY THE GROUP AND WHAT THEY GROUP PUTS OUT IS LEVELS OF EDUCATION WITH CORE CONTENT AND CORE CONFIDENCE FOR THE HIGHER-DEGREE LEVEL. [ INDISCERNIBLE ]
AT THE MASTERS LEVEL, THERE WAS NO SUCH CONTENT INCLUDED WHEN THAT DOCUMENT CAME OUT ORIGINALLY. THAT'S GOING TO BE REVISE ADD AND REVIVE AN OPPORTUNITY TO GET THAT AS WELL, AND THAT WOULD BE THE PRACTICE --. [ INDISCERNIBLE ]
THEY'VE ALSO HAD SOME LARGE CONFERENCES ON INCORPORATING GENETICS, ONE IN WHICH DR. COLLINS SPOKE TO THE GROUP AND I DID AS WELL, AS FAR AS APPLYING GENETICS EDUCATION INTO NURSING CURRICULUM. SO THE GROUP IS MOVING ON THE NEED FOR THAT. WHAT SOME OF THE VALUES ARE ARE SIMILAR I THINK TO WHAT ALL THE HEALTH PROFESSIONS ARE EXPERIENCING, AND THOSE ARE THE INTENSITY AND DENSITY OF THE CURRICULUM. THERE ARE A LOT OF COMPETING PATHS FOR ALL OF US IN TERMS OF WHAT WE PUT IN OUR PROGRAMS, HOW MUCH TIME WE SPEND ON THEM. THE SECOND IS THAT THERE HAS BEEN A LOT THAT RELATES TO GENETICS IN NURSING PROGRAMS THROUGHOUT THE YEARS, BUT THEY TEND TO BE MORE IN THE SPECIALIZED, DISCREET DISEASE-TYPE AREAS, RATHER THAN A BROAD LOOK AT THE INFLUENCE OF GENETICS AND GENOMICS ACROSS THE CURRICULUM, WHERE MOST OF US BELIEVE THAT THAT NEEDS TO BE IN TERMS OF PATIENT EDUCATION AND COUNSELING, AND THAT THOSE THINGS ARE NOT ALL THAT DIFFERENT FOR PEOPLE WITH GENETIC DISORDERS, BUT THAT THE KNOWLEDGE HAS TO BE INTEGRATED THROUGHOUT THE NURSING CURRICULUM. ANOTHER BARRIER HAS BEEN THE LACK OF QUALIFIED FACULTY TO BE ABLE TO DO THAT, AND THERE HAS BEEN EFFORTS TO ADDRESS THAT. SUMMER INSTITUTES, NIR PROGRAMS IN TERMS OF BIDDING THAT OUT, BUT IT HASN'T DIFFUSED THE PROGRAMS, IF YOU WILL, NATIONALLY. SO, I THINK THOSE ARE SOME OF OUR MAJOR CHALLENGES IS JET-- GETTING GENETICS THROUGH THE LIFE SPAN IN NURSING EDUCATION.
DR. LEWIS?
PROBABLY A NICE SEGWAY FROM THE SAME DISCIPLINE, AND I'M HERE TODAY AS PRESIDENT OF THE INTERNATIONAL SOCIETY OF NURSES IN GENETICS, AND IT'S ALSO INTERESTING TO ME, HAVING BEEN A MEMBER OF THE FORMER SECRETARY'S ADVISORY COMMITTEE ON GENETIC TESTING TO WATCH THE CONTINUED GROWTH IN DEVELOPMENT AND I WANT TO APPLAUD YOU ALL FOR CONTINUING ALONG SOME OF THE LINES THAT WE FELT WERE SO IMPORTANT. ONE OF THE THINGS THAT I REALLY THINK IS IMPORTANT IS WHEN YOU TALKED ABOUT THE LACK OF LOOKING AT GENETICS IS EXCEPTIONAL. I THINK THAT BECOMES REALLY IMPORTANT, AS IT BECOMES PART OF BASE KNOWLEDGE, RATHER THAN CONSIDERED SPECIALITY KNOWLEDGE. THAT'S VERY CRITICAL. AND I THINK OF MYSELF WHEN I WORKED AS AN ADVANCED PRACTICE NURSE, AND IF EVERY TIME I SAW A PATIENT WITH AN ELEVATED TEMPERATURE I CALLED IN THE INFECTIOUS DISEASE SPECIALIZE, WE COULDN'T GET FAR AND THAT SPECIALIST CERTAINLY HAS A PLACE IN LOOKING AT PATIENTS WHO HAVE COMPLICATED PROBLEMS OR REFRACTRY TREATMENT, BUT I THINK WHEN WE GET TO THE POINT WHERE EVERY GENERALIST IS ABLE TO INCORPORATE BASIC GENETICS SNOJ AND THOSE WITH THE SPECIALITY KNOWLEDGE BECOME LIKE THE INFECTIOUS DISEASE SPECIALIST OR THE SUB SPECIALISTS, THAT THAT'S WHEN WE'LL KNOW THAT WE HAVE ARRIVED. SO PART OF WHAT WE'RE WORKING REALLY HARD TO DO IS TO ENSURE THAT ALL COLIN YITIONS AND HEALTHCARE PROFESSIONALS -- IN OUR CASE WE CAN ONLY DEAL WITH NURSES -- BUT PEOPLE HAVE A CERTAIN BASE KNOWLEDGE AND IT'S PUBLISHED IN COLLABORATION WITH THE AMERICAN NURSE'S ASSOCIATION AND GOES TO THE STANDARD PRACTICE OF LOOKING AT WHAT KIND OF KNOWLEDGE BASED ON THE COMPETENCIES, BUT LOOKING AT WHAT KIND OF KNOWLEDGE WE WOULD EXPECT A GENERALIST TO HAVE AND WHAT KIND OF KNOWLEDGE WE WOULD EXPECT A SPECIALIST TO HAVE, AND THAT MODEL MAKES AN AWFUL LOT OF SENSE. SO WHAT WE'RE WORKING ON IS TO WORK WITH OUR -- BECAUSE WE'RE RELATIVELY SMALL GROUP OF PEOPLE WHO ARE SPECIALISTS, PART OF OUR GOAL IS TO WORK WITH OUR 2.7 MILLION COLLEAGUES WHO ARE NOT MEMBERS OF ISON, TO ENSURE PEOPLE HAVE BASIC KNOWLEDGE THAND WE'RE AVAILABLE AS CONSULTANTS AND COLLABORATEORS, BUT NOT YOU KNOW, POWER IS ONLY POWERFUL WHEN YOU SHARE IT. SO, THE IDEA OF BEING ABLE TO SHARE IT SO THAT THE KNOWLEDGE BASE TRIK TRICKLES DOWN, WHAT ARE THE BEAREERS -- BARRIERS TO THAT? I THINK THE BARRIERS ARE THE SAME ONES THAT HAVE BEEN RECOGNIZED IN TERMS OF COMPETING, PRIORITIES FOR ALL OF US, BUT I ALSO AM OLD ENOUGH TO REMEMBER WHEN THE NEW DISEASE CALLED HIV WAS DISCOVERED IN THE EARLY 80s AND WE GET MANDATES TO INCLUDE THAT IN THE CURRICULUM AND WE SAT THERE AND ARGUED OVER WHAT WAS GOING TO STAY IN AND WHAT WAS GOING TO GO OUT SO WE COULD INCLUDE INFORMATION ON HIV AND AIDS. SOMEHOW, WE'VE MANAGED TO DO THAT, AND I DON'T KNOW IF OUR HEALTH PROFESSIONS EDUCATION THAT DOESN'T INCLUDE CONTENT ON HIV AT THIS POINT. SO, I THINK IT CAN BE DONE. IT'S JUST A MATTER OF MAKING SURE THAT EVERYBODY HAS THE WILL. SO I'M REALLY PLEASED TO SEE THE CERTIFICATION AND THE CREDENTIALING BODIES AT THE TABLE BECAUSE I THINK THAT'S WHERE THE PUSH IS GOING TO COME. GOOD WILL ONLY GOES SO FAR, MANDATES WORK MUCH BETTER.
THANK YOU. DR. WHITCOMB?
WELL, FROM THE PERSPECTIVE OF MEDICINE, IT MAY SURPRISE SOME OF YOU WHEN I SAY THAT I REALLY DON'T THINK THAT THE ISSUE IN TERMS OF BEING A BEARER, REALLY RELATES TO HOW CROWDED THE CURRICULUM IS. I THINK THAT THE ISSUES AS THEY RELATE TO MEDICINE ARE TOO FUNDAMENTAL PROBLEMS THAT SORT OF TRANSCEND ALL EDUCATION, AT LEAST AT LEVEL OF THINKING ABOUT THE CONTINUING OF EDUCATION, INCLUDING MEDICAL SCHOOL AND ONTO RESIDENCY TRAINING. ONE F THOSE IS SIMPLY HOW DO YOU INTEGRATE CONTENT THAT SHOULD BE INTEGRATED REALLY ACROSS THE CURRICULUM IN A WAY THAT MAKES THAT CONTENT RELEVANT AND IMPORTANT? AND LEARNABLE. WE ARE PERHAPS FORTUNATE IN ONE SENSE, BECAUSE THE MOVEMENT IN MEDICAL EDUCATION REFORM, AS IT RELATES TO THE UNDERGRADUATE, THE MEDICAL SCHOOL CURRICULUM FOR THE PAST DECADE HAS REALLY BEEN TO EVOLVE TOWARDS A INTEGRATED CURRICULUM AS OPPOSED TO THE DISCIPLINE-SPECIFIC SORT OF DEPARTMENT WITH CONTROLLED COURSES THAT WERE TYPICAL OF MOST MEDICAL SCHOOL CURRICULUM. AND THIS IS AN ON-GOING PROCESS WITH MANY SCHOOLS INVOLVED, AND IT TAKES TIME TO DO IT, BUT I THINK THE CHALLENGE IS SIMPLY IN HOW YOU INTEGRATE WITHIN THE FRAMEWORK OF THAT CURRICULUM. I THINK PERHAPS THE BIGGEST CHALLENGE THOUGH, AS WE LOOK DOWN THE ROAD -- AND I THINK THIS WILL APPLY NOT ONLY TO MEDICAL SCHOOLS, BUT I THINK IT WILL BE AN ISSUE FOR RESIDENCY EDUCATION AS WELL -- IS THE OPPORTUNITY FOR THE LEARNERS TO HAVE EXPOSURE TO PATIENTS THAT WILL MAKE REAL FOR THEM WHAT IT IS THEY ARE EXPECTED TO LEARN AND HOW THEY WILL THEN APPLY THEIR LEARNING IN THE PATIENT CARE ENVIRONMENT. THAT IS A EXTRAORDINARY CHALLENGE OF AN INCREASING SEVERITY, SIMPLY FOR EDUCATION OF MEDICAL STUDENTS AT ALL LEVELS, AND I THINK THAT WITH THE CHANGES THAT ARE OCCURRING WITHIN THE DELIVERY SYSTEM, IT WILL CONTINUE TO BE A MAJOR CHALLENGE AS WE TRY TO FIGURE OUT HOW TO GET ACCESS TO PATIENTS AND THE KINDS OF PATIENTS THAT STUDENTS AND RESIDENTS NEED TO BE EXPOSED TO, SINCE MORE AND MORE OF THAT CARE IS BEING CONDUCTED OUTSIDE OF THE TRADITIONAL TEACH-IN SITE, WHICH IS THE MAJOR TEACH-IN HOSPITAL. SO I REALLY THINK THOSE ARE THE TWO MAJOR BARRIERS RIGHT NOW FOR MEDICINE.
THANK YOU. MR. MACK INTERNY?
THANK YOU. THE BARRIERS THAT EVERYONE HAS DISCUSSED SO FAR APPLY ACROSS THE BOARD. WE HAVE MORE THAN 145 MEMBER ORGANIZATIONS NOW HERE IN THE UNITED STATES AND ABROAD AS WELL. CERTAINLY WE HAVE A FAIR NUMBER OF ORGANIZATIONS THAT REPRESENT PHYSICIANS, BUT THE VAST MAJORITY OF OUR MEMBERS ARE NON-PHYSICIAN ALLIED HEALTH GROUPS, COMMERCIAL ORGANIZATIONS, CONSUMER GROUPS AND SO ON. SO, ONE OF OUR GREAT CHALLENGES IS TO ADDRESS THE NEEDS OF THIS EXTRAORDINARILY-DIVERSE MEMBERSHIP. I SHOULD SAY THAT ACROSS THE BOARD, AGAIN, THE GREATEST GAP WE FACE IS THE AVAILABILITY OF EVIDENCE IN EDUCATIONAL MATERIALS THAT DEMONSTRATE TO OUR CONSTITUENTS THAT GENETICS MAKES A DIFFERENCE IN PATIENT OUTCOME, AND CAN CHANGE EFFECTIVELY WHAT THEY DO NOW RATHER THAN FIVE YEARS FROM NOW. WE NEED TO MAKE THAT CASE MORE DRAMATICALLY. WE NEED EVIDENCE TO DO THAT AND WE NEED THE EDUCATIONAL MATERIALS TO DO THAT. ANOTHER GAP IS PROVIDING MORE GUIDANCE ABOUT WHAT TO TEACH. YOU'VE HEARD REFERENCE A NUMBER OF TIMES THIS MORNING TO THE CORE COMPETENCIES AND I THINK THEY HAVE BEEN VERY EFFECTIVE. LOTS OF ORGANIZATIONS HAVE BEGUN TO INCORPORATE THE CORE COMPETENCIES INTO THE DEVELOPMENT OF THEIR OWN CREEK LA, WHETHER IT'S ON THE GRADUATE CURRICULUM OR CONCERNING EDUCATION. INCREASINGLY, WE'RE GETTING QUESTIONS ABOUT WHAT SHOULD WE TEACH THEN? WHAT IS THE CONTENTS WHICH TO TEACH? I THINK THE CORE COMPETENCIES DO A NICE JOB OF SAYING THIS IS WHERE WE WOULD LIKE YOUR CONSTITUENTS TO END UP WHEN YOU'RE FINISHED, WHAT E BUT WHAT DO WE TEACH TO GET THEM THERE? THIS WEEK WE'RE POSTING ON THE WEBSITE A SET OF CORE PRINCIPLES IN GENETICS THAT REALLY ARE WE BELIEVE CORE CONCEPTS THAT MOST HEALTH PROFESSIONALS SHOULD BE ABLE TO UNDERSTAND WITH GETICS. SO THAT'S ANOTHER EXAMPLE. ANOTHER SERIES GAP FOR US -- AND WE'RE TRYING, BELIEVE ME, WE'RE TRYING -- IS THE ISSUE OF DIVERSITY IN CULTURAL CONFIDENCE. HOW DO WE REPRESENT ISSUES RELATED TO DIVERSITY AND CULTURAL CONFIDENCE MORE EFFECTIVELY IN OUR PROGRAMS AND HOW DO WE INVOLVE ORGANIZATIONS MORE EFFECTIVELY THAT CAN HELP US DO THAT? SO, ANY SUGGESTIONS THAT ANYBODY IN THIS ROOM HAS TO HELP US DO THAT MORE EFFECTIVELY, WE WOULD CERTAINLY APPRECIATE. AND THE LAST GAP FOR US, I THINK IS RELATED TO WHAT I JUST MENTIONED, AND THAT IS, THERE MAY BE SOME SIGNIFICANT GAPS IN MEMBERSHIP, THERE MAY BE ENTIRE CONSTITUENTSIES WITHIN THE HEALTH PROFESSIONS THAT WE NEED TO BE REACHING AND WE NEED TO HAVE INVOLVE IN THE DEVELOPMENT OF OUR MATERIALS. WE HAVE A MEMBERSHIP COMMITTEE THAT IS LOOKING AT THAT ISSUE NOW, TAKING A LOOK AT OUR MEMBERSHIP AND HOW IT SORTS OUT WITH RESPECT TO DISCIPLINE AND TRYING TO FIGURE OUT WHERE WE SHOULD PLACE OUR REFERENCE IN THAT REGARD.
ONE OF THE RESUFFER -- REOCCURRING THEMES FOR MANY OF YOU, REFERRING TO FACULTY AND LACK OF FACULTY IN GENETICS IS A BEARER. DO YOU HAVE SUGGESTIONS ON HOW WE COULD ADDRESS THIS ISSUE OF TRAINING OUR FACULTY? DR. LEWIS?
THERE WERE SEVERAL PROGRAMS THAT I KNOW OF THAT ARE AVAILABLE THAT MIGHT SERVE AS MODELS IN TERMS OF NURSING. I BELIEVE ONE OF THE LC-FUNDED PROJECTS WAS THE PROJECT AT THE CINCINNATI CHILDREN'S MEDICAL CENTER THAT RUNS IN TWO FORMATION. ONE IS WEB-BASED FOR 16 OR 18 WEEKS, AND THE OTHER IS THE SUMMER, TWO-WEEK INTENSIVE PROGRAM THAT'S BASICALLY DESIGNED TO PROVIDE NURSING FACULTY WHO HAVE NO PREVIOUS KNOWLEDGE OR HAVE MINIMAL KNOWLEDGE IN GENETICS WITH WHAT THEY NEED TO INFUSE THE CURRICULUM WITH GENETICS, AND THEN I TOOK THAT A COUPLE YEARS AGO AND EVERY YEAR I GET A FOLLOW-UP SURVEY THAT SAYS SO, WHAT DID YOU DO THIS YEAR? YOU KNOW, YOU TOOK THIS COURSE AND USED THE GOVERNMENT'S MONEY AND WHAT HAVE YOU DONE THIS YEAR? AND THAT IS ONE PROGRAM THAT I KNOW OF THAT EXISTS THAT WAS LC-FUNDED, I BELIEVE. I MAY BE WRONG ON THAT, BUT I'M PRETTY SURE THAT'S WHERE THE ORIGINAL FUNDING CAME FROM. THE FOUNDATION FOR BLOOD RESEARCH HAS PUT OUT A GROUP OF MODULES THAT ARE AVAILABLE THAT YOU CAN ORDER BY MAIL. THEY GIVE FACULTY INFORMATION THAT THEY CAN THEN USE AND ADAPT TO THEIR CURRICULUM. AND THEN OTHER PROGRAMS LIKE THE NATIONAL INSTITUTE OF NURSING RESEARCH HAS AN 8-WEEK RESIDENTIAL INSTITUTE PROGRAM FOR ADVANCED PRACTICE NURSES AND NURSE FACULTY THAT DEAL WITH BOTH EDUCATION AND RESEARCH TRAINING, AND THAT ONE IS REALLY TO HELP FACULTY WITH THE KNOWLEDGE DEVELOPMENT AS WELL AS THE KNOWLEDGE TRANSMISSION ROLE. I THINK THERE IS SOME REALLY GOOD PROGRAMS OUT THERE, THE PROBLEM IS THAT, AT LEAST IN NURSING, THEY'RE RELATIVELY SMALL. MY CLASS LAST SUMMER AT SGI WAS 20, AND WE WERE THE FOURTH OR FIFTH CLASS. SO IN FIVE YEARS, WE HAVE TRAINED A HUNDRED NURSE EDUCATORS. THE CINCINNATI PROGRAM PROBABLY HAS GROUPS OF 25 TWICE A YEAR. SO, I THINK THERE ARE PROGRAMS THERE. PART OF IT IS VOLUME, PART OF IT IS TAKING PEOPLE AND FINDING PEOPLE WHO ARE WILLING TO DO THIS AND THEN GET BACK TO THEIR HOME INSTITUTIONS AND THEN HAVE TO CONVINCE CURRICULUM COMMITTEES THAT THIS MATERIAL BECOMES IMPORTANT. SO, I THINK THERE ARE MODELS OUT THERE. THE QUESTION IS, WHAT'S THE BEST MODEL? AND I THINK THE BEST MODEL IS THAT SOME PEOPLE LEARN BEST IN WEB-BASED, OTHERS LEARN BEST WHEN YOU TAKE THEM OUT OF THEIR ENVIRONMENT FOR A COUPLE WEEKS AND TURN OFF THEIR PAGERS AND CELL PHONES. SO, I THINK IT'S JUST A MATTER OF WHAT WORKS BEST FOR INDIVIDUALS, BUT THERE ARE MODELS OUT THERE, AT LEAST THAT I KNOW OF IN MY DISCIPLINE.
MR. McNERNEY?
THANK YOU. I WANTED TO COMMENT ON ONE OF THE SLIDES YOU SHOWED DURING YOUR PRESENTATION AND THE COMMENT THAT PHYSICIANS PREFER INTERACTIVE LEARNING WITH CASE STUDIES. I CAN TELL YOU WITH MY EXPERIENCE THAT THAT APPLIES ACROSS THE BOARD TO ALL HEALTH PROFESSIONALS, NOT JUST PHYSICIANS. WE FOUND THAT THAT'S PROBABLY THE BEST WAY TO GO TO ENGAGE PEOPLE IN THE GENETICS CONTENT. WITH RESPECT TO MODELS, YOU'VE JUST FINISHED DEVELOPING IN CONJUNCTION WITH A NUMBER OF COLLEAGUES FROM THE DENTAL COMMUNITY, A PROGRAM TO TRAIN FACULTY IN DENTISTRY AND DENTAL MY JENICS. IT'S CREATIVELY CALLED "GENETICS DENTISTRY ON HEALTH" ON OUR WEBSITE. YOU CAN FIND THAT. WE'VE DEVELOPED THAT AROUND CASE STUDIES WITH THE INTENT OF TRYING TO GET DENTISTS AND DENTAL MY JENIST USE TO THINK MORE AS THE PATIENTS COME TO THEM. BUT AGAIN, IT'S FOCUSED ON CASE STUDIES, WHICH IS ON THE CORE-BASED GENETICS.
DR. DUNCEON?
EXCUSE ME. FIRST, JUST TO SET THE RECORD STRAIGHT, I AM A FORMER CHAIR TO THE DEPARTMENT OF MICROBIOLOGY AS OF MARCH OF THIS YEAR. AND ALSO, I'M SITTING IN FOR DR. RANDALL MAXY, THE PRESIDENT OF THE NATIONAL MEDICAL ASSOCIATION. JUST WANTED TO MAKE A COMMENT TO YOUR FIRST POINT AND THEN A COMMENT ON EDUCATION. THE NATIONAL MEDICAL ASSOCIATION FOR THE COLLECTIVE INTERESTS, ARE PATIENTS OF AFRICA DESCENT FOR THE MOST PART. IT IS THE LARGEST AND OLDEST NATIONAL ORGANIZATION REPRESENTING THE INTERESTS OF AFRICAN-AMERICANS REPRESENTING MORE THAN 25,000 PHYSICIANS AND THE PATIENTS THAT THEY SERVE. IT'S DEDICATED TO KEEPING ITS MEMBERS ABREAST OF THE MANY RAPIDLY-OCCURRING ADVANCES ACROSS THE VARIOUS MEDICAL SPECIALTIES AND THE OTHER CHANGES AFFECTING MEDICAL PRACTICE. SO, FROM THAT GENERAL PERSPECTIVE, CERTAINLY THE ORGANIZATION CONSIDERS GENETICS AND GENOMICS A PARAMOUNT IMPORTANCE. THE NATIONAL MEDICAL ASSOCIATION, MORE THAN 100 YEARS OLD, HAD ITS FORMATION IN THE HISTORY OF THE AMERICAN COMMUNITY. AND FROM THAT HISTORY, THE SUBJECT OF GENETICS BECOMES PARTICULARLY IMPORTANT BECAUSE THE SUBJECT CONCERNS THE INCLUSION OF AFRICAN-AMERICANS, NOT JUST AS A SOCIAL IMPERATIVE, BUT THE SUBJECT MATTER FORCES THE INCLUSION OF AFRICAN-AMERICANS AS A SCIENTIFIC IMPERATIVE. RECOGNIZING THAT THE SUBJECT OF GENETICS ITSELF IS CHALLENGING A WHOLE CONCEPT, CONSTRUCT, AS WELL AS METHODS OF THEN TEACHING BIOLOGY. WE ARE MOVING FROM GROUP-BASED KIND OF ANALYSIS TO INDIVIDUALIZED. GENETICS AS A DISCIPLINE IS OFTEN EQUATED WITH THE PROSPECTS OF INDIVIDUALIZING MEDICINE. SO, THERE'S A PARTICULAR CHALLENGE THAT THE NMA RECOGNIZES IN A SIGNS THAT HAS THE POTENTIAL OF INDIVIDUALIZING MEDICINE IN A SOCIETY THAT TENDS TO GROUP IN ITS APPROACH AND METHODOLOGY. SO GENETICS AS A SUBJECT THAT DEALS WITH BIOLOGICAL IDENTIFICATION AND CLASSIFICATION OF GROUPS AND AT ALL LEVELS IS PARTICULARLY CHALLENGING. THE ISSUE, AS WAS STATED ON ONE OF YOUR SLIDES, OF WHAT DOES THE SCIENCE OF GENETICS HAVE TO SAY ABOUT OUR BIOLOGICAL THINKING ABOUT RACE AND RACE MEDICINE, PROFILING IN MEDICINE, DEVELOPING DRUGS FOR GROUPS WHEN YOU'RE USING A SCIENCE THAT IS POTENTIALLY DISTINCT IN ITS CAPACITY TO INDIVIDUALIZE. THE NMA IS SENSITIVE TO GENETICS AS A SUBJECT THAT IS VERY DE-STABLIZING IN ITS WHOLE CONCEPT WITH REGARDS TO THE COMMUNITY. IN THE EVOLUTION OF THE SCIENCE, THE ORGANIZATION IS CONCERNED ABOUT THE APPREHENSION EASIES OF THE COMMUNITY -- APPREHENSIONS OF THE COMMUNITY TO BECOME ENGAGED IN THE POTENTIAL BENEFIT BECAUSE OF THE HISTORICAL CONTEXT IN WHICH THE COMMUNITY, AS WELL AS THE PARTICULAR SCIENCE, HAS BEEN APPLIED. SO, A BEARER, A MAJOR BEARER -- BARRIER, IS HOW DO WE ENGAGE THE COMMUNITY IN SUCH A WAY THAT THE PROSPECTS TO BENEFIT BECOME THE DRIVING FORCE, TO BE PROACTIVE FOR ENGAGEMENT, RECOGNIZING THAT EXCLUSION IS NOT AN OPTION IN THE SCIENCE OF GENETICS BECAUSE THE SCIENCE ITSELF DEALS WITH THE FUNDAMENTALS OF DISEASE DIAGNOSIS, TREATMENT, PROGRESSION IN WAYS THAT NOT BEING INCLUDED AT EVERY LEVEL OF THE SCIENCE AND ITS APPLICATION IN SOCIETY IS CRITICAL TO HOW HEALTH WILL BE MINISTERED TO THE GROUP AS LONG AS WE ARE PART OF THIS AMERICAN COMMUNITY. SO, THE EDUCATION OF THE COMMUNITY, AS WELL AS THE PROFESSIONALS IN MEDICINE, IS A PARAMOUNT IMPORTANCE, AS REFLECTED IN THE MOOTINGS AT THE LOCAL, REGIONAL, AND NATIONAL LEVELS AT THE ORGANIZATION, SPONSORED IN ITS CONTINUING MEDICAL EDUCATION, ITS OUTREACH TO COMMUNITY. ITS OUTREACH TO THE COMMUNITY IN WAYS THAT ARE COMPLIMENTED BY OUR CURRENT FOCUS ON FAITH-BASED ORGANIZATIONS, AGAIN, THE HISTORY OF THE POPULATION IS ONE WHERE THE ENGAGEMENT OF FAITH-BASED ORGANIZATIONS BECOMES PERHAPS A PROTRACTIVE MEANS OF ADDRESSING A SUBJECT THAT TENDS TO BE FROM A FEAR-BASED PERSPECTIVE. AND SO, THE CHALLENGE OF HOW DO YOU ENSURE THAT AS NEW KNOWLEDGE IS COMING FORTH THAT YOU ARE REPRESENTED, THAT YOUR PERSPECTIVE IS REFLECTED, IT'S PARAMOUNT, IT'S UNDERSCORED. I JUST SAY, AS ONE WHO IS IN ACADEMIA, THE ROLE OF EDUCATION ABOUT THE SCIENCE AS WELL AS THE APPLICATION OF THE SCIENCE AS -- AND HELPING THE COMMUNITY TO APPRECIATE, THAT THIS IS A SCIENCE THAT DEMANDS OUR PARTICIPATION, THAT IT'S A SCIENCE THAT'S CHALLENGING THE REFERENCE POINT, IT'S CHALLENGING DEFINITION OF WHAT IS NORM. INCLUSION OF AFRICAN PEOPLE BRINGS WITH IT THE CHALLENGE OF VARIATION AND DIVERSITY IN BIOLOGY AND NEEDS TO RECOGNIZE THAT WHAT ONE SEES IS -- CANNOT BE SEPARATED FROM THE CONTEXT AND THE REFERENCE POINT FROM WHICH YOU ARE VIEWING, AND HOW DO WE BEGIN TO INCORPORATE THAT IN OUR MEDICAL PRACTICE? THAT WE HAVE DIVERSITY AS A STRENGTH, AS AN INSTRUCTED COMMODITY, NOT JUST A PATH LOGICAL OR A BASIS OF DISEASE, AND THAT'S MY LAST POINT. IN TRYING TO ENGAGE THE COMMUNITY IN TERMS OF GENETICS AND ITS IMPACT, RECOGNIZING THAT THE GENOME PROJECT NOT ONLY LED US TO TECHNIQUES AND TECHNOLOGY FOR IDENTIFYING GENES THAT SINGLE GENES, THAT HAVE MAJOR EFFECTS IN CAUSING DISEASE, BUT IT NOW HAS BROUGHT US TO AN APPRECIATION OF VARIATION -- HEPATITIS VARIATION AND OTHER GENES THAT VARY, BUT ARE NOT PATH LOGICAL, JUST ARE DIFFERENT IN THEIR FUNCTIONAL CAPACITIES, AND THAT THEY WORK TOGETHER TO ACCOMPLISH FUNCTION. SO, HOW DO WE BEGIN TO CHANGE THE CONCEPT OF MEDICINE WHEN THE GENE IS NOT THE PATH LOGICAL AGENT, BUT IT IS A MEANS BY WHICH WE CAN ANALYZE, PROCESS, AND UNDERSTAND DISEASE, NOT ALWAYS AS A STRUCTURAL DEFECT, BUT A REGULATORY ONE AND UNDERSTANDING WHAT IS REGULATING THE EXPRESSION OF GENES THAT ARE ASSOCIATED WITH VARIOUS DISEASES. THANK YOU.
THANK YOU VERY MUCH. IT IS -- EXCUSE ME, BECAUSE OF THIS CHANGE IN SCIENCE IN GENERAL THAT THE AMERICAN SOCIETY OF HUMAN GENETICS HAS BEEN ASKING THE QUESTION -- EVEN AS IF WE DIDN'T HAVE ENOUGH QUESTIONS AT THE PROFESSIONAL LEVEL AND THE HEALTH PROFESSIONAL LEVEL, WE'VE ASKED THE QUESTION KIND OF ON THE FRONT END. HOW CAN WE WORK TOGETHER BETTER TO IMPROVE SEVERAL OF THESE -- OR IMPROVE ON OUR ANSWERS TO SEVERAL OF THESE QUESTIONS? AND QUESTION: WE ASKED OURSELVES WHAT RESOURCES DO WE HAVE? AND I'M SPEAKING NOW AS THE UMBROA ORGANIZATION OF GENETICS, KNOWING THAT THE AMERICAN COLLEGE OF AMERICAN GENETICS AND THE OTHER MEDICAL GENETICS ORGANIZATIONS WOULD BE HERE AND BE ABLE TO SAY SOME OF THE THINGS TO STAY SLIGHTLY MORE FOCUSED, BUT I'LL SPEAK IN THE BROADER TERM. WHAT WE BRING TO THE TABLE, IF YOU WILL, IS HUMAN GENETICS RESOURCES. IN THE FORM OF INDIVIDUALS WHO HAVE A KNOWLEDGE BASE. WHAT WE HAVE WITH THE OTHER ORGANIZATIONS HERE AND AS DR. DUNSTON HAS POINTED OUT, IN THE GENERAL PUBLIC, IS A SET OF NEEDS AND QUESTIONS THAT ARE BEING ASKED. SO, IT SEEMS TO ME, IY, THAT WE ARE NOW AT ALMOST THE POINT OF WHAT I CALL GENETIC READINESS ACROSS THE BOARD. PEOPLE ARE BEGINNING TO IDENTIFY GENETICS AS INTERESTING, AS IMPORTANT, APPEARING IN THE NEWSPAPER AND SO ON, AND NOW THEY WANT TO ASK THE MORE PRACTICAL QUESTION, AND WE, THE JET CRISTS ARE SAYING WE HAVE IN -- SOME INFORMATION, AND IT IS THE GAP IN BETWEEN THE GENETICISTS' NEED TO BECOME MORE TEACHING-READY AND THE ORGANIZATIONS AND COMMUNITIES' NEED TO TELL US MORE SPECIFICALLY WHAT THEY NEED. AT THAT INTERFACE, I BELIEVE IS THE CONCEPT OF MODELS OR MATERIALS AS JOE McINERNY POINTED OUT BEFORE. AND NOW WE'VE HAD TWO TRIES AT DNA DAY. EACH ONE HAS BEEN BETTER THAN THE FORMER ONE. THIS YEAR WE GOT A COUPLE OF VERY INTERESTING RESPONSES TO OUR SURVEY AND SOME TERRIFIC IDEAS ON HOW TO ENGAGE SECOND AND THIRD GRADERS IN SOME MOVEMENTS AND SOME CUT EEG AND PASTING -- CUTTING AND PASTING KINDS OF ACTIVITIES THAT TALK ABOUT DIFFERENCES AND SIMILARITIES AND SO ON IN A VERY PRACTICAL KIND OF WAY. SO SOME NEW KINDS OF THINGS THAT WE THINK CAN BE PUT OUT THERE. THIS EXACTLY THE SAME THING COULD APPLY IN PUBLIC HEALTH, IN OUR WORK WITH THE AMERICAN ACADEMY OF FAMILY PRACTICE IN THEIR GENETICS INITIATIVE AND SO ON, WHERE THE NEEDS AND THE HUMAN RESOURCES ARE COMING TOGETHER IN THE FORM OF MODELS TO TELL US HOW WE CAN BE MORE HELPFUL IN THE DEVELOPMENT OF CERTAIN MODELS, ALTHOUGH WE DON'T HAVE THE EXPERTISE TO ACTUALLY TRANSLATE AND PUT THOSE ONTO THE CD-ROM. WE ARE GOING TO NEED THE RESOURCES TOGETHER TO GET THAT ACTIVITY AND BRING THE OTHER PROFESSIONALS IN THAT NEED TO FOCUS THAT. BUT I THINK WE HAVE THE MAJOR PORTIONS COVERED, AND NOW WE JUST NEED THE IMPOTENCE TO PUT IT TOGETHER AND BUILD THE REST OF THE MODELS.
THANK YOU. JOE, ACTUALLY VERY EL CONSEQUENTLY SAID MUCH OF WHAT I THINK THE PERSPECTIVE WOULD BE ON THIS. I THINK THAT WE ARE BRINGING TO THE TABLE THE HUMAN RESOURCES. WE'RE AT A NUMBER OF TABLES NOW, ALONG WITH ASHD AND OTHER ORGANIZATIONS, PRIMARILY WE'VE BEEN FOCUSING ON THE LAST YEAR THE ALLIED HEALTH PROFESSION BY JOINING THE HEALTH PROFESSION NETWORK, WHICH IS AN ORGANIZATION OF ALLIED HEALTH PROVIDER PROFESSIONAL ORGANIZATIONS AS WELL AS JOINING THE ASSOCIATION OF SCHOOLS OF ALLIED HEALTH PROVIDERS. THEY'RE TRYING TO BE THE RESOURCE TO INTEGRATE IN THE CURRICULUM INTO L ALLIED HEALTH PROVIDER EDUCATION AS WELL AS ON-GOING EDUCATION FOR THEIR PROFESSIONALS. BUT AS JOE POINTED OUT, WE HAVE THE RESOURCES, THEY HAVE THE INTEREST. IT'S GETTING THE EVIDENCE-BASED ACTIVITIES, DEVELOPING CASE STUDIES BASED AROUND THOSE SPECIFIC DISCIPLINES IN ORDER TO INTEGRATE THOSE INTO THEIR CURRICULUM AND DAILY ACTIVITIES.
FOR THE PUBLIC HEALTH, I SHOULD NOTE IN TERMS OF YOUR QUESTION ABOUT WHAT ACTIONS ARE NECESSARY IN ORDER TO CLAIM FAK -- TRAIN FACULTY. I SHOULD POINT OUT THAT THE ROLE FOR THE CENTERS FOR DISEASE CONTROL AND PREVENTION HAS EXCLAIMED IN MOVING GENETICS MORE INTO THE FOREFRONT OF RESEARCH, IN PARTICULAR TEACHING IN PRACTICE CONNECTIONS WITH THE SCHOOLS OF PUBLIC HEALTH. THE CENTER AND OF COURSE THE RESIDENT EXPERT ON THIS PROGRAM AND THE COMMITTEE, HAS BEEN FUNDING THREE CENTERS FOR GENOMICS AND PUBLIC HEALTH, AT WHICH MICHIGAN IS ONE, NORTH CAROLINA AND WASHINGTON ARE THE OTHER TWO. AND PART OF OUR ROLE HAS BEEN TO -- UP TILL NOW -- TO ADVANCE KNOWLEDGE OF GENOMICS IN PUBLIC HEALTH AND TO FURTHER THE INTERACTION BETWEEN THE SCHOOLS AND THE WORLD OF PUBLIC HEALTH PRACTICE AROUND GENOMICS AND THE INTEGRATION OF GENOMICS INTO PUBLIC HEALTH PRACTICE. I SHOULD SAY ONE OF THE FACILITYING FACTORS HERE IS THAT AT THE SAME TIME THE SCHOOLS OF PUBLIC HEALTH ARE INCREASINGLY TRYING TO DEVELOP CLOSER RELATIONSHIPS WITH PUBLIC HEALTH PRACTICE, GENOMIC BEING IN AN EARLY STAGE OF EXPANDING IN PUBLIC HEALTH PRACTICE, PRESENTS A WONDERFUL MODEL FOR THE SCHOOLS ON HOW TO CONNECT WITH PRACTICE, BECAUSE IN THE SCHOOLS AND PRACTITIONERS CAN BE LEARNING ABOUT INTEGRATION AND EXPANDING KNOWLEDGE IN THE FIELD AT THE SAME TIME THEY CAN BE KEEPING PACE WITH EACH OTHER AND IN FACT FORMING THE USUAL LOOP OF RESEARCH APPLIED INTO PRACTICE, PRACTICE BEING STUDDED BY RESEARCHERS, ET CETERA. AND GENOMICS IS JUST A WONDERFUL MODEL OF HOW TO DO THAT. SEEMS TO ME THAT THE ASSOCIATION OF -- HERE IN OUR CASE, OUR OWN ASSOCIATION'S SCHOOLS OF PUBLIC HEALTH CAN DO A LOT TO FACILITATE THE LINKING UP OF PEOPLE WITHIN EACH OF THE SCHOOLS WHO ARE CARRYING OUT THESE ROLES WITHIN THE SCHOOLS THAT ARE EXPANDING THE TEACHING OF GENOMICS. ONE PROGRAM HAS BEEN SUPPORTING THIS IN THEIR BOUT TO EXPAND THEIR PROGRAM AND CENTERS. THEY'RE NOT ALL BEING SCHOOLS OF PUBLIC HEALTH, BUT THEY'RE ALL GOING TO BE INVOLVED IN PUBLIC HEALTH, INCLUDING PRACTICE AND SHARING EDUCATION. AND ALL OF WHAT'S BEEN SAID ABOUT INCREASING RESOURCES THAT ARE AVAILABLE FOR TEACHING NEEDS TO BE PARALLEL, SEEMS TO ME, BY ADVOCATES WITHIN THE INSTITUTIONS OF LEARNING WHO NOT ONLY CARRY OUT THE ROLES OF SPREADING OUT THE NEED FOR TEACHING IN THEIR OWN SCHOOLS, BUT NEED TO BE ABLE TO CONNECT WITH EACH OTHER, AND HERE'S WHERE THE ASSOCIATIONS CAN DO AN AWFUL LOT TO FORM COMMITTEES THAT CONNECT PEOPLE ACROSS THE SCHOOLS OF PUBLIC HEALTH WHO ARE TRYING TO ADVANCE TEACHING OF GENETICS IN THEIR SCHOOLS SO THEY CAN BE SHARING LESSONS LEARNED, BARRIERS HOW TO OVERCOME.
THANK YOU. I'D LIKE TO OPEN THE QUESTIONS UP TO THE COMMITTEE NOW.
DOES ANYONE HAVE ANY COMMENTS ON WAYS THAT PRACTITIONERS, NOT STUDENTS, THAT WE CAN GET THE WORLD OUT -- WORD OUT TO THEM? I'M A PARENT OF A CHILD WITH A GENETIC DISORDER, AND THE FRUSTRATIONS IN DEALING WITH MEDICAL PROFESSIONALS, IT SEEMS LIKE MEDICAL STUDENTS, NURSING STUDENTS, YOU'VE GOT A CAPTIVE AUDIENCE, AND THAT'S PROBABLY THE EASIER QUESTION IS YOU KNOW, YOU CAN TEACH THEM. MY EXPERIENCE WAS -- I MEAN, I'VE GOT A HUSBAND WHO IS A PHYSICIAN, I'VE GOT A FATHER WHO'S A PHYSICIAN. WE SAW FOUR DIFFERENT PHYSICIANS THE FIRST TIME WE WERE RECOMMENDED GENETIC TESTS WAS BY A RESIDENT. I THINK THE PROBLEM I SEE IS HOW DO YOU GET THE PEOPLE THAT ARE ALREADY OUT THERE PRACTICING TO REALIZE THE IMPORTANCE OF GENETICS? BECAUSE AT LEAST YOU KNOW, I WOULD GUESS WITH CONTINUING EDUCATION, IT'S STRICTLY VOLUNTARY. I MEAN, THEY'RE GONNA GO TO THE THINGS THAT THEY'RE GONNA GO TO AND I THINK MOST PHYSICIANS PROBABLY DON'T UNDERSTAND THE IMPORTANCE OF GENETICS. AND HOW DO YOU ENCOURAGE THEM OR FORCE THEM TO LEARN WHAT THEY NEED TO KNOW ABOUT GENETICS? IT SEEMS WE HAVE THE MATERIALS, BUT HOW DO YOU GET THEM TO USE THEM?
I WOULD MAKE A COMMENT IN REGARDS TO NURSING IN THAT REGARD. IN SOME STATES, CONTINUING EDUCATION IS IN FACT A PART OF RECERTIFICATION OF SPECIALISTS, DEPENDING ON HIS SPECIALITY, BUT I THINK THE ASPECT WE BRIEFLY TOUCHED ON BEFORE, WHICH IS REQUIRING A CERTAIN AMOUNT OF GENETIC KNOWLEDGE MUCH IN THE SAME WAY THAT HIV KNOWLEDGE IS PART OF MANDATED, CONTINUING EDUCATION IN MANY STATES WOULD BE ONE WAY TO UNFORTUNATELY, ONE HAS TO LOOK AT DRIVING CURRICULUM SOMETIMES BY LICENSE OR CERTIFICATION ASPECT, BUT THAT IS ONE WAY TO DO IT. AND ANOTHER WAY IS TO SEED THROUGH THE VARIOUS SPECIALITY CONTINUING ORGANIZATIONS. GENETICS IN EACH OF THEIR PROGRAMS, WHETHER IT BE AS A FEATURE BY ITSELF OR INTEGRATED WITHIN SUCH THINGS AS YOU KNOW, MI, IF IT'S CARDIOLOGY, CONFERENCE UPDATES AND THAT OR WHICHEVER WAY THAT GOES.
I'D JUST LIKE TO ACKNOWLEDGE THAT A MEMBER OF THE COMMITTEE HAS JOINED US. WELCOME.
THANK YOU VERY MUCH. I'M LISTENING CAREFULLY AND I WILL CHIME IN IF I GET A CHANCE. THANK YOU.
LET ME PUT ON A SLIGHTLY DIFFERENT HAT FOR JUST A MOMENT FOR THE LAST 14 YEARS I'VE BEEN A REPRESENTATIVE FROM THE AMERICAN BOARD OF MEDICAL GENETICS TO THE ASSEMBLY OF THE AMERICAN BOARD OF MED INDICATE SPECIALTIES, AND THERE HAVE BEEN TWO OR THREE THINGS THAT HAVE HAPPENED IN THE LAST FIVE YEARS OR SO IN THAT ORGANIZATION AND COMING BACK TO THE COMMENT THAT DR. LEWIS MADE EARLIER ABOUT STATEMENTS AND ACCREDITING BODIES BEING EXTREMELY IMPORTANT. ONE OF THE THINGS THAT HAS HAPPENED IS THE SHIFT IN CONTINUING MEDICAL EDUCATION TO REQUIRED MAINTENANCE ACERTIFICATION. THIS IS A FORMAL SHIFT, THIS IS A DIFFICULT SHIFT FOR MANY OF THE SPECIALTIES TO MAKE THAT ONCE HAD THE ATTITUDE ONCE I PASS MY BOARD, THAT'S REALLY IT. SO, WE DO HAVE A WINDOW OF OPPORTUNITY HERE TO IN FACT INCLUDE GENETICS AS AT LEAST RECOGNIZEABLY NEW INFORMATION. OUR CHALLENGE IS TO MAKE IT THE MOST EXCITING AMONG THE VARIOUS KINDS OF CONTINUING MEDICAL EDUCATION COURSES OR WHATEVER, THAT INDIVIDUALS CAN TAKE. SO, IT'S A 2-WAY STREET THERE CERTAINLY. ONE OF THE OTHER COMMENTS I WOULD LIKE TO MAKE IS THAT AS THE GENETICS REPRESENTATIVE, THROUGH THE PROCESS OF CREATING THE PRINCIPLES OF PRACTICE IN TRAINING AND IN MAINTENANCE ASSERTIFICATION, I THINK IT WOULD BE THE APPROACH OF THE GENETICIST AND OUR POSITION IN NUMBER ONE LOOKING AT FAMILY UNITS AND NUMBER TWO, FULLY RECOGNIZING AND ADDRESSING CULTURAL-SPECIFIC ISSUES AND THE NEED FOR CULTURAL COMPETENCE IN EVERY CLINICAL SITUATION, I THINK OUR EXPERIENCE IN THAT HELPED BRING THAT TO THE FLOOR, AND AI THINK THAT MAY BE A RESULT OF THE WAY, IF YOU WILL, GE NVG ETICISTS KINDA LOOK AT THE WORLD THE SAME TIME WE'RE LOOKING AT INDIVIDUAL PATIENTS, BUT WE DO HAVE AN OPEN WINDOW HERE.
DR. LEWIS.
ONE OF THE THINGS THAT WE'VE BEEN WORKING AT HARD IS TO MAKE PEOPLE WITH SPECIALIZED KNOWLEDGE AVAILABLE FOR PROFESSIONAL MEETINGS. FOR EXAMPLE, I'M SPEAKING WITH THREE COLLEAGUES, ONE OF WHOM I BELIEVE BECAME INTERESTED IN GENETICS BECAUSE SHE HAS A CHILD WITHGENETIC CONDITION, AND AND THE NURSE FROM NIH WHO'S HER RESEARCH NURSE, AND ANOTHER COLLEAGUE AND MYSELF PERFORMED AT THE PRESENTING AT AMERICAN NURSE'S ASSOCIATION, WHICH IS PROBABLY THE BIGGEST GENERALIST NURSING ORGANIZATION. DR. LASHLEY'S PRESENTING THERE TOO THIS YEAR. SO WE'RE WORKING REALLY HARD TO PRESENT AT NON-GENETICS CONFERENCES AND TO BE ABLE TO WORK WITH OUR COLLEAGUES NOW. OBVIOUSLY WHEN I'M SPEAKING, I'M ONE OF 27 BREAKOUT SESSIONS AND HOW MANY PEOPLE ARE GONNA CHOOSE TO GO THERE VERSUS RETIREMENT PLANNING VERSUS YOU KNOW, HOW TO TAKE CARE OF THE PATIENT IN THE INTENSIVE CARE UNIT. THAT BECOMES THE HARD ISSUE. BUT I THINK PART OF WHAT HAPPENS IS THAT AS PEOPLE ARE EXPOSED AND LEARN FROM PEOPLE LIKE YOU -- BECAUSE YOU KNOW, I LEARNED MOST OF WHAT I LEARNED NOT JUST FROM BOOKS, BUT FROM THE PATIENTS I SEE EVERY DAY -- SO, AS I INTERACT WITH PEOPLE LIKE YOU AND YOUR FAMILY, THAT WILL HOPEFULLY KEEP MY INTEREST IN THIS AREA WHERE I NEED MORE EDUCATION AND SO WHEN I GET TO MY PROFESSIONAL MEETING, I'LL CHOOSE THE GENETICS SESSION OVER THE RETIREMENT SESSION OR WHATEVER. SO, THAT I THINK IT'S A 2-WAY STREET, BUT TO FORGET THAT PATIENTS ARE PROBABLY OUR MOST VALUABLE SOURCE OF EDUCATION I MEAN, THAT'S NOT HELPFUL AS A PATIENT WHEN YOU'RE GOING IN TO REALIZE THAT YOU'RE AS RESPONSIBLE FOR EDUCATING THE COLIN YITION AS THE COLIN YITION -- SO IF YOU LOOK AT IT AS A PARTNERSHIP, SOMETIMES THAT BECOMES HELPFUL TOO AND EACH OF US HAS AN OPPORTUNITY TO HELP EDUCATE FOLKS, AND I'M SURE THAT FOLKS YOU AND YOUR FAMILY DEALT WITH LEARNED AS MUCH, BUT THAT BECOMES AN IMPORTANT PARTNERSHIP, I THINK TOO.
MR. McINERNY?
YES, THANK YOU. PROFESSIONAL SOCIETIES ARE AN EXTREMELY IMPORTANT VEHICLE FOR REACHING OUT TO HEALTH PROFESSIONS. I'LL GIVE YOU FOUR CONCRETE EXAMPLES, ONE OF WHICH MR. -- MISS ELAINE CAN DESCRIBE BETTER THAN I, BUT THE SOCIETY OF GENETIC COUNSELORS WORKED A COUPLE YEARS AGO WITH THE END CRITICAL CONDITIONOLOGY SOCIETY TO INTEGRATE GENETICS THOROUGHLY INTO THE MEETING. I DON'T KNOW HOW MANY MEMBERS WERE THERE, BUT I THINK AT LEAST 20 MEMBERS OF THE SOCIETY WHO WERE AT THAT MEETING, AND THEY ACTUALLY CONSTRUCTED GENETIC COUNSELING SESSIONS AROUND THE PARTICULAR GENETIC TESTS. SO THEY COME IN AND DO HYPOTHETICAL GENETIC COUNSELING. POINT HERE, AND YOU'LL HEAR IT AGAIN, IS TO WORK WITH THE PROFESSIONAL SOCIETY SO THAT YOU'RE MEETING THEIR NEEDS. WE WILL BE WORKING -- WITH THE NATIONAL BLACK NURSES ASSOCIATION TO DEVELOP A HALF-DAY WORK SHOP ON GENETICS FOR ITS NURL MEETING IN 2005. BEGINNING THIS YEAR, IN OCTOBER, WITH ITS ANNUAL MEETING IN ORLANDO, THE AMERICAN ACADEMY OF FAMILY INFORMATION DSHG PHYSICIANS WILL BEGIN A YEAR-LONG FOCUS ON GENETICS AND THERE ARE LOTS OF ORGANIZATIONS INVOLVED IN THIS, THE GENOME INSTITUTE IS INVOLVED IN ONE WAY OR ANOTHER. THAT WILL CONTINUE FOR THE YEAR, BUT IT, AGAIN, WE WORK WITH THIS SOCIETY, THE ACADEMY, TO DETERMINE WHAT THEIR NEEDS WERE, AND I THOUGHT IT WAS VERY INTERESTING. WHEN THE GROUP OF GENETICISTS SAT DOWN TO DEVELOP THE MODULES. WHEN YOU LOOKED IT -- AT WHAT THE INTEREST OF THE FAMILY PHYSICIANS WERE, THERE WAS ALMOST NO CONNECTION, EXCEPT FOR THE FACT THAT EACH OF THE DISEASES -- THEY WERE ALL DISEASE-ORIENTED -- EACH OF THE DISEASES HAD THEIR GENETIC COMPONENT, BUT THE IMPORTANCE IS TO WORK WITH THE PROFESSIONAL SOCIETY TO BUILD THOSE PROGRAMS. SO, THERE WILL NOW BE ONE MODULE A MONTH ROLLED OUT BY THE AMERICAN ACADEMY OF FAMILY PHYSICIANS IN CONJUNCTION WITH A NUMBER OF US AROUND THIS TABLE TO BRING GENETICS TO FAMILY PHYSICIANS ONE MONTH OUT OF THE YEAR. WE'VE ALSO JUST FINISHED WORKING WITH THE AMERICAN COLLEGE OF CLINICAL PHARMACY TO DEVELOP A NEW CONTINUING EDUCATION PROGRAM ON GENOMICS, AND THEY CAME TO US AS A GENETICS COMMUNITY AND WE'VE BEEN WORKING WITH THEM NOW TO BRING GENETICS THAT THEY NEED TO THEIR MEMBERS. SO, THE PROFESSIONAL SOCIETIES ARE EXTREMELY IMPORTANT.
THANK YOU VERY MUCH. I HAVE A GENERAL QUESTION. IF I'M HEARING ABOUT THESE VARIOUS FORMS OF CURRICULUM, THE CASES, THE DIFFERENT MATERIALS THAT ARE BEING DEVELOPED, IS THERE A MECHANISM IN WHICH THOSE CAN BE SHARED? PART OF MY CONCERN IS EVERYONE'S STARTING FROM SCRATCH EVERY TIME.
IF I MAY, THAT'S WHY THIS EXISTS. IF YOU COME TO OUR WEBSITE, YOU'LL SEE A LIST NOW OF ABOUT 55 DIFFERENT EDUCATIONAL RESOURCES IN OUR DATABASE. ABOUT 10 OF WHICH WE HAD REVIEWED, TWO REVIEWS, ONE BY A MEMBER OF THE PROFESSION FOR WHOM THE MATERIALS ARE INTENDED. OTHER REVIEW BY OUR TRAFFIC IN GENETICS AND LOTS OF OTHER RESOURCES, BUT THAT'S WHY WE EXIST. SO, IF YOU HAVE THE MATERIALS THAT YOU WOULD LIKE TO BRING THE NOTICE OF THE COMMUNITY, PLEASE LET US KNOW AND WE WILL LINK TO THEM OR PUT THEM ON OUR WEBSITE.
THANK YOU.
I DON'T HAVE A QUESTION, I HAVE A COMMENT ON WHAT YOU SAID IN TERMS OF TRYING TO REACH PRACTICING --. [ INDISCERNIBLE ]
SOMEBODY SAID EARLIER IN TERMS OF THE WINDOW OF OPPORTUNITY BEING OPEN. I THINK THAT IS RIGHT, BUT I THINK IN ADDITION TO THE WINDOW BEING OPEN, SORT OF BEING STRATEGIC ABOUT THE TYPES OF PROVIDERS YOU ENGAGE WOULD BE SOMETHING THAT WOULD BE A PORTION FOR THE GROUP TO CONSIDER, AND IN THE DIRECTION --. [ INDISCERNIBLE ] I THINK IT'S IMPORTANT THAT THE FAMILY PHYSICIAN YOU KNOW, ARE COMING TO THIS ISSUE AND THEY HAVE THE PARTICULAR FOCUS, BUT I THINK THAT THERE'S ALSO A ROLE FOR THE COMMITTEE IN TERMS OF UNDERSTANDING THE SCIENCE AND UNDERSTANDING THE PROGRESSION OF THE SCIENCE AND WITH THE PROGRESSION OF THE SCIENCE, WHICH TYPES OF PROVIDERS, WHETHER THEY BE PHYSICIANS OR NURSES, YOU KNOW, WHICH PROVIDERS ARE THE FOREFRONT OF THE EVOLUTION OF THAT SCIENCE AND WHICH ORGANIZATIONS YOU KNOW, WE NEEDED TO TARGET. WHICH PROFESSIONAL GROUPS THAT NEED TO BE TARGETED AS A COMMITTEE. SO, I MEAN, JUST SUMMARIZING MY MAIN POINT IS THAT THE TARGET IN TERMS OF THE PROVIDERS THAT ARE THE FOREFRONT, BECAUSE I WOULD IMAGINE THAT THE CARDIOLOGY --. [ INDISCERNIBLE ]
THE PEDIATRICIANS, THE SCIENCE IS SUCH THAT ENGAGING N THE PEDIATRIC COMMUNITY WOULD BE MUCH MORE OF A PRIORITY THAN ENGAGING SOMEONE--
SO, ON A -- ON A NATIONAL LEVEL, I THINK IT'S DIRECTED ON A STATE LEVEL. IS THERE A NATIONAL MECHANISM TO MANDATE BME IN OR CONTINUING EDUCATION? I CALL IT BME BECAUSE I HAPPEN TO BE A PHYSICIAN, BUT CONTINUING PROFESSIONAL EDUCATION FOR ALL GROUPS AT A NATIONAL LEVEL, RATHER THAN DOING IT STATE BY STATE OR ORGANIZATION BY ORGANIZATION?
DR. WHITCOMB?
THE SIMPLE ANSWER IS NO. LICENSING IS GRANTED BY STATES IN MEDICINE. AS A MATTER OF FACT, NOT ALL STATES EVEN HAVE REQUIREMENTS FOR ANY CONTINUING MEDICAL EDUCATION. ABOUT A THIRD OF THE LICENSING AUTHORITIES DO NOT -- AND OF THE STATES THAT HAVE REQUIREMENTS FOR LICENSE YOUR OR RELOONS -- LICENSEURE, I SHOULD SAY, VERY FEW OF THE STATESMAN KATE ANY SPECIFIC CONTENT THAT NEEDS TO BE COVERED AS A PART OF THE RELICENSEURE. THERE ARE SOME THAT DO, BUT AS A GENERAL RULE, THE ANSWER'S NO. BUT IF ONE WANTED TO THINK ABOUT THIS ACROSS THE COUNTRY AS A WHOLE, THE ANSWER IS, THERE IS NO MECHANISM IN PLACE TO ACCOMPLISH THAT.
OKAY.
THANKS. SO PEOPLE IN THIS ROOM OBVIOUSLY, I THINK ALL CONCUR THAT EDUCATION IS IMPORTANT, AND I FEEL A LITTLE BIT LIKE SEVERAL OTHER MEETINGS TOO, EVERYONE'S PREACHING TO THE CHOIR. THERE ARE ALL THESE REASONS WHY THE SCIENCE IS CHANGING AND PEOPLE NEED TO BE KEPT UP-TO-DATE AND ALL THAT. AND I'M A LITTLE UNCLEAR ABOUT WHAT GENETIC EDUCATION MEANS. IF IT'S HOW GENETICS WORK SO THAT A PHYSICIAN OR A NURSE OR A CONSPIRACY -- COUNSELOR HAS TO BE ABLE TO EXPLAIN YOU KNOW, DEALING WITH INHERITANCE OR WHAT THE RISKS ARE OF THE TESTS THEY'RE GONNA HAVE, OR IF THEY'RE SUPPOSED TO -- AS IN KIMBERLY'S CASE -- KNOW ALL THE RARE DISORDERS AND HELP IN DIAGNOSIS, THAT'S A COMPLETELY DIFFERENT AND MUCH MORE CHALLENGING THING, OR IS IT THE ALL-SEE PART THAT WE ALWAYS HEAR ABOUT? BUT EITHER WAY, IT'S PRETTY CLEAR IN OUR RESOLUTION THAT'S SAYING THAT EDUCATION IS REALLY NECESSARY AND HAS TO BE COORDINATED AND ALL THAT. BUT I THINK THIS COMMITTEE IS REALLY GOING TO HAVE AN IMPACT, IT'S KINDA' LIKE THE GENETIC DISCRIMINATION ACT, WHICH IS, WE'RE GONNA HAVE TO TELL THE SECRETARY THAT SOMETHING IS DEFINITELY BROKEN, AND I'M NOT REALLY HEARING THAT SOMETHING'S BROKEN, SO MAYBE THINGS ARE BROKEN AND CERTAINLY IF YOU LOOK AT DIVERSITY AMONG GENETIC COUNSELORS AND THINGS LOO THAT, WE CAN GO DOWN THERE, BUT IS THERE SOMETHING YOU CAN POINT TO THAT IS REALLY BROKEN? CAN YOU BRING A LARGE NUMBER OF PATIENTS OR FAMILIES IN FRONT OF US OR IN FRONT OF THE WORLD AND SAY THESE PATIENTS WERE MISTREATED BECAUSE THEIR PHYSICIAN WAS CLUELESS ABOUT GENETICS OR GOT IT WRONG? I HAVEN'T HEARD ANY OF THOSE STORIES. I HAVE ONLY HEARD KINDA' LIKE WE'RE ANTICIPATING, THIS IS ALL COMING AND WE BETTER BE READY AND WE ONLY HAVE YOU KNOW, ONE THING FOR MILLIONS OF POTENTIAL PATIENTS WHO WILL ALL BE SCREWED UP IF WE DON'T HAVE ANY FURTHER EDUCATED PEOPLE OUT THERE. BUT IS ANYTHING REALLY BROKEN TODAY? IF NOT, IT'S GOING TO BE CHALLENGING TO GET THE FUNDS AND THINGS WE'RE ASKING FOR. SO PEOPLE WHO ARE GOING TO CONTINUE TO MAKE COMMENTS, JUST HIGHLIGHT FOR ME ANYTHING YOU CAN POINT TO THAT IS REALLY, REALLY BROKEN? IT WOULD BE REALLY HELPFUL. AND AGAIN, IF PART OF THE CONTINUING EDUCATION IS THINGS LIKE KNOWING EVERYTHING ABOUT RARE DISEASES, I KNOW FROM MY EXPERIENCES AS AN ADVOCATE, I CAN BRING FORWARD THOUSANDS OF FAMILIES WHO, LIKE MY FAMILY, SPENT A YEAR AND $60,000 ON NEEDLESS TESTING TO FIND OUT WHAT THE REAL DISEASE MY KIDS HAD BECAUSE THE PHYSICIANS AND THE WORLD-CLASS MEDICAL CENTERS AND NURSES DIDN'T THINK OF THE RIGHT DISEASE TO TEST FOR. OTHER THAN THAT, OTHER THAN KNOWING THAT KIND OF INFORMATION, WHICH I'M AFRAID MAYBE WILL ALWAYS BE A CHALLENGE WITH RARE DISORDERS, ALL THE OTHER THINGS THAT WE'RE TALKING ABOUT THAT ARE JUST PART OF GENETICS EDUCATION, IS IT SO BAD RIGHT NOW THAT THINGS ARE REALLY BROKEN?
I JUST WANT TO MAKE ONE COMMENT, THOUGH BRAD. I CERTAINLY DON'T EXPECT ANY -- EVERY PHYSICIAN TO KNOW EVERY RARE DISORDER, AND I THINK YOU'RE RIGHT --. [ INDISCERNIBLE ]
WHAT I WAS LOOKING AT MORE IS JUST THE FACT THAT THE PHYSICIAN SHOULD RECOGNIZE THAT THERE'S PORNLLY GENETIC PHASES FOR THE PROBLEM THAT THE CHILD IS HAVING, BECAUSE CERTAINLY MY CHILD'S DISORDER IS RARE, BUT IF YOU LOOK AT THE SYMPTOMS SHE WAS HAVING AND LOOK BACK ON IT NOW, I THINK THEY SHOULD HAVE BEEN TESTING VERY OBVIOUS TO THE PHYSICIAN, THAT GENETIC TESTING SHOULD BE RECOMMENDED, AS THERE WERE POTENTIALLY A GENETIC BASIS FOR THE PROBLEM, AND CERTAINLY NOT --. [ INDISCERNIBLE ]
I THINK IT'S --. [ INDISCERNIBLE ]
I THINK SOMETHING IS BROKEN WHEN YOU HAVE SEVERAL DOCTORS THAT IT TAKES TWO YEARS TO EVEN RECOMMEND GENETICS TESTING FOR HER RARE DISORDER. NOT THAT THEY KNOW THE RARE DISORDER, BUT THE GENETIC TESTING WOULD HAVE RECOMMENDED OTHER OPTIONS. THAT WOULD BE WHAT I RECOMMEND --. [ INDISCERNIBLE ] [ INAUDIBLE ]
ONE OF THE COMMENTS. [ INAUDIBLE ]
LET ME SUGGEST THREE AREAS WHERE IT'S NOT SO MUCH THINGS ARE BROKEN, BUT THINGS ARE AT THIS POINT MOVING TOWARD WHAT COULD BE VERY SIGNIFICANT. ONE IS IN THE AREA WHERE YOU LOOK FOR INSTANCE AT GENETIC TESTING, HERE IS AN EXPANDING TECHNOLOGY AS TO WHICH THE CORPORATE SECTOR, THE PROFIT-MAKING SECTOR HAS AN INCENTIVE TO GET MORE AND MORE TESTS USED. FAR BEYOND WHAT THE SCIENTIFIC SECTOR IS ABLE TO DEMONSTRATE IS VALID, COST-EFFECTIVE, ET CETERA. SO, THE ABILITY TO TEACH PEOPLE WHO ARE PROFESSIONALS ON HOW TO ASSESS AND EVALUATE THE WORTHWHILENESS, THE VALIDITY OF THIS EXPANDING TECHNOLOGY IS ABSOLUTELY CRITICAL BECAUSE IF PEOPLE, WHETHER THEY'RE MEDICAL PROFESSIONALS OR PUBLIC HEALTH PROFESSIONALS, DON'T HAVE THIS ABILITY TO ASSESS THE WORTHWHILENESS OF THIS VAST ARRAY OF EXPLODING TECHNOLOGY, WHAT WE'LL END UP WITH IS AN ENORMOUS WASTEFUL USE OF HEALTHCARE RESOURCES. SECONDLY, THERE IS THIS WHOLE MATTER OF DISTORTIONS THAT ARE OCCURRING IN THE PUBLIC VIEW OF GENETICS AS WHERE THE PUBLIC IS GETTING MOST OF ITS INFORMATION FROM, AND THE PUBLIC OF COURSE, IS GETTING MOST OF ITS INFORMATION ON GENETICS, AS WELL AS IT DOES OTHER SUBJECTS, FROM TV, FROM MEDIA, GENERALLY, RELATIVELY LITTLE FROM HEALTHCARE PROFESSIONALS. ALMOST NONE FROM PUBLIC HEALTH. AND THE MESSAGE IS COMING TO THE PUBLIC NOW ARE BOTH DETERMINISTIC IN TERMS OF MEDIA HYPE ON GENETICS CONTROLLING FOR CONDITIONS WHICH IT REALLY DOESN'T, AS WELL AS AN ITEM WHICH IS ON YOUR AGENDA, FORTUNATELY, AND THAT IS THE DIRECT TO CONSUMER ADVERTISING, WHICH WILL FURTHER CONFOUND THE PUBLIC'S VIEW OF WHAT IT MEANS TO HAVE THIS. AND HERE AGAIN, IT SEEMS TO ME, WE NEED AN INCREASING ARRAY OF PROFESSIONALS WHO UNDERSTANDS HOW TO INFORM THE PUBLIC ABOUT GENETICS. THIS IS A PARTICULARLY CRITICAL ROLE FOR PUBLIC HEALTH PEOPLE BECAUSE WE SEE OURSELVES AS HAVING A ROLE OF PUBLIC EDUCATION, AND HERE AGAIN, THIS HAPPENS TO BE ONE OF THE MAJOR THEMES THAT CDC HAS BEEN EMPHASIZING IN THEIR NEW ANNOUNCEMENT OF FUNDING OF GENOMIC INCENTIVES. THIS ROLE IN TRYING TO CORRECTION DISTORTIONS IN THE PUBLIC'S MIND. THE THIRD AREA WHERE WE COULD BE HEADING TOWARD A SERIOUS CRASH IS ONE THAT'S DIRECTLY RELEVANT TO WHAT DR. DUNSTON TO MY LEFT IS TALKING ABOUT, AND THAT IS THE FACT THAT WE HAVE HERE AN EXPANDING SCIENCE THAT HAS THE POTENTIAL TO EXACERBATE HEALTH DISPARITYIES AS AS AT THE SAME TIME IT HAS THE POTENTIAL TO REDUCE DISPARITYIES, AND AT THIS POINT IT'S UNCERTAIN AS TO WHICH DIRECTION. AND HOW OUR PROFESSIONALS LEARN ABOUT GENETICS, HOW THEY USE THAT LEARNING IN INFORMING PRACTITIONERS HOW TO PRACTICE GENETICS AND HOW, AGAIN, THEY INFORM THE PUBLIC ABOUT WHAT IS THE MEANING OF GENOMICS, WILL HAVE A LOT TO DO WITH WHETHER THIS NEW TECHNOLOGY IS GOING TO CREATE FURTHER GAPS BETWEEN THE HAVE'S AND HAVE-NOT'S, FURTHER STIGMAIZATION OF GROUPS THAT HAVE ALREADY BEEN STIGMATIZED TOO MUCH AND WHETHER GENOMICS AS A NEW, POWERFUL TOOL TO ADDRESS SOME OF THE DISEASES THAT ARE RESPONSIBLE FOR HEALTH -- FOR WHICH GENETICS HAS A COMPONENT AND DISEASES THAT ARE RESPONSIBLE FOR HEALTH DISPARITIES, WHETHER THIS POWERFUL TOOL WILL BE USED TO REDUCE THAT. SO, THIS, SEEMS TO ME, TO BE THE THREE AREAS WHERE ACTION IS ABSOLUTELY ESSENTIAL IF WE'RE NOT GOING TO SEE THE SCIENCE --. [ INAUDIBLE ]
DOCTOR?
I WANTED TO MAKE SEVERAL COMMENTS ABOUT SEVERAL OF THESE POINTS. AND FIRST IS ONE THAT I DON'T THINK I'VE HEARD HERE. IF I DID, I MISSED IT. AND THAT IS IN PRE-PROFESSIONAL EDUCATION, AND I'LL FOCUS ON PRE-MEDICAL EDUCATION, SINCE THAT WHAT I HAVE MORE EXPERIENCE WITH. AND THE WHOLE CONCEPT THAT WE SHOULD REALLY EQUIP OUR PROFESSIONAL STUDENTS WHEN THEY ARRIVE IN PROFESSIONAL SCHOOL WITH SOME BACKGROUND IN THIS AREA. AND THE TOPIC THAT I FIND PARTICULARLY APPALLING IN PRE-MEDICAL EDUCATION IS THE FACT IN WE STILL REQUIRE ORGANIC CHEMISTRY. I, QUITE HONESTLY, HAVE NOT FORMULATED A MEDICATION ONCE IN MY CAREER. IT IS SIMPLY THERE AS AN ENERGY BARRIER TO PRE-MEDICAL STUDENTS, AND YET, SOMETHING AS IMPORTANT AS GENETICS, WHERE ONE COULD PICK ANOTHER TOPIC THAT HAS RELEVANCE TO 21st CENTURY MED KRITION -- MEDICINE, IS NOT REQUIRED. I WOULD URGE THAT IN EACH OF THESE AREAS WE BEGIN TO LOOK AT WHAT THE PREREQUISITES ARE SO OUR STUDENTS COME UNDERSTANDING THE IMPORTANCE OF THESE AREAS. WITH RESPECT TO THE INTEGRATION OF CONTENT THAT WAS MENTIONED, I THINK IT'S IMPORTANT TO KNOW THAT SOME OF OUR RE-VAMPING OF MEDICAL SCHOOL CURRICULUM OR TREATING GENETICS AS A THREAT THAT RUNS THROUGHOUT THE MEDICAL CURRICULUM, NOT AS A SPECIFIC TOPIC, AND I THINK IT'S IMPORTANT THAT WE MAKE IT FUNDAMENTAL AND EXCITING AND FAITH-BASED AND ALL OF THOSE TOPICS. THE DEGREE WITH WHICH WE ARE SUCCESSFUL DOES HAVE TO DO WITH THE POLITICS OF CREEK LA -- CURRICULUM AND ARGUMENTS OF CROWDING OF THE CURRICULUM. SO AGAIN, TO THE EXTENT THAT ORGANIZATION AS SUCH AS THE WAMC OR OTHER ORGANIZATIONS WILL ENCOURAGE THE PART OF CURRICULUM THAT WILL HELP THOSE OF US WHO DO HAVE TO DEAL WITH THE REALITY OF FIGHTING SPACE IN THE CURRICULUM. I THINK IT'S ALSO IMPORTANT TO NOTE THE COST BENEFITS OF GENETIC EDUCATION. IT DOES PREVENT THE DIAGNOSTIC ODYSSEYS THAT HAVE BEEN MENTIONED, WHICH IN FACT ARE COST BENEFICIAL. AND I'LL SITE SEVERAL EXAMPLES WITH WHICH I AM FAMILIAR WHERE THESE DIAGNOSTIC ODYSSEYS HAVE OCCURRED WITH DELAY IN TREATMENT AND MANAGEMENT OF PATIENTS. PKU, THE CLASSICAL NEWBORN SCREENING TEST. SCREENING IS SCREENING, NOT EVERY CHILD WILL BE IDENTIFIED AND THOSE THAT ARE MISSED FREQUENTLY GO GSHTION GO ON FOR YEARS BEFORE SOMEBODY SUGGESTS THAT THE APPROPRIATE TEST BE DONE. THERE ARE NUMEROUS EXAMPLES, SICKEL CELL DISEASE, AGAIN, RELATIVELY COMMON DISORDERS. AND CERTAINLY QUITE COMMON IN SPECIFIC COMMUNITIES IN THIS COUNTRY THAT ARE NOT UNDERSTOOD REALLY BY PRACTITIONERS. CYSTIC FIBROSIS IS ANOTHER TAKE WHERE INDIVIDUALS CAN GO ON FOR YEARS AND YEARS BEFORE THEY'RE IDENTIFIED. AND FINALLY, WE NEED TO MAKE SURE THAT ALL OF OUR PROFESSIONAL STUDENTS UNDERSTAND THAT THESE -- THIS KNOWLEDGE WILL PREVENT MEDICAL LEGAL MISTAKES. MEDICAL MISADVENT YOURS. THERE'S A BIG FOCUS ON MEDICAL ERRORS THESE DAYS. AND WE TALK ABOUT DRUG ERRORS AND ALL THOSE THINGS, BUT ERRORS OF OMISSION, ERRORS OF LACK OF DIAGNOSIS OR MISDIAGNOSIS ARE ALSO EXTREMELY IMPORTANT AND WE HAVE TO RECOGNIZE THAT NOT ONLY ARE THOSE COSTS INEFFICIENT FOR THE FAMILY, THEY LEAD TO TRAGEDY, WHERE DIAGNOSISES ARE NOT MADE OR MADE TOO LATE, BUT ULTIMATELY, THEY ALSO COST SOCIETY, BOTH IN PRODUCTIVITY AS WELL AS IN REAL DOLLARS FOR THOSE DIAGNOSTIC ODYSSEYS, SO, I THINK THERE ARE A NUMBER OF WAYS THAT WE CAN APPROACH THIS. IF WE DON'T DO THIS IN HEALTHCARE PROFESSION, THEN OUR COLLEAGUES, SOME OF WHOM ARE SITTING AROUND THIS TABLE, IN THE LEGAL PROFESSION WILL FORCE US TO BRING THIS TO THE FLOOR IN HEALTH PROFESSION EDUCATION BECAUSE THEY WILL POINT OUT THE MISADVENTURES AND THE COSTS OF THOSE MISADVENTURES WILL BECOME EVEN HIGHER WITH MEDICAL LEGAL ACTIONS. THANK YOU.
THIS IS REID, THANKS.
REID, GO AHEAD.
OH, OKAY, UM. ONE OF THE THINGS THAT I THINK -- I ALSO FOUND VALUABLE THE PHRASING OF THE QUESTION -- CAN YOU HEAR ME OKAY?
YES, WE CAN.
OKAY, I THOUGHT I WAS DYING WITH THE PHRASING OF THE QUESTION AROUND WHAT WAS THE PROBLEM -- AND WHAT WAS BROKEN AND WHAT DO WE FIX? I THINK TWO THINGS. ONE, BASED ON WHAT McCABE JUST SAID, THAT THE SECRETARY OF HEALTH HAS A NEW, I THINK INITIATIVE AROUND HEALTH INFORMATION INFRASTRUCTURE. AND I WOULD WONDER WHETHER OR NOT WE MIGHT BE ABLE TO HAVE SOME RELATIONSHIP OR PROPOSE SOME INITIATIVE WITH THAT NEW HEALTH INFORMATION INFRASTRUCTURE TASK FORCE TO FIND WAYS IN WHICH WE CAN SUPPORT THE AVAILABILITY OF THE BEST EVIDENCE-BASED TRIAL, AS IT IS CONTINUOUSLY UPDATED IN AN EASY AND ACCESSIBLE WAY FOR COLIN YITION -- COLIN YITIONS. OBVIOUSLY, NOBODY COULD POSSIBLY KEEP UP WITH ALL THE VARIOUS INFORMATION AND ANALYSIS IN THE FIELD. AND SO WHAT I'M HOPING IS THAT SOMEHOW ONE OF THE SOLUTIONS MAY BE THAT WE COULD FIND A WAY FOR THE SECRETARY TO USE HIS INFORMATION TASK FORCE AS A POTENTIAL SOLUTION TO THE AVAILABILITY AT THE POINT OF CARE FOR PEOPLE AS THE INFORMATION SYSTEMS ARE STANDARDIZED FOR BOTH THE OUT-PATIENT AS WELL AS THE IN-PATIENT THAT MIGHT BE AN IDEA. SECONDLY I THINK THAT THE POINT MADE EARLIER AROUND THE MAINTENANCE OF CERTIFICATION IS EXCEEDINGLY IMPORTANT, AND I THINK BECAUSE AT THE END OF THE DAY, IT'S WHAT YOU HOLD CLINICIANS ACCOUNTABLE FOR, IN TERMS OF THEIR CRITERIA FOR CERTIFICATION, AND I THINK --. [ INDISCERNIBLE ]
IT'S AN ESSENTIAL GROUP OF PEOPLE THAT WE NEED TO BRING IN. LASTLY, I WOULD HOPE THAT MAYBE IF YOU COULD TALK LATER IN THIS MEETING, SOME THINGS --. [ INDISCERNIBLE ]
WE'LL GET TO THE IDEA OF PERFORMANCE ASSESSMENT. WHEN YOU HOLD PEOPLE ACCOUNTABLE FOR THEIR PERFORMANCE, THAT BECOMES PERHAPS THAT NATIONAL UNIFYING STANDARD THAT SOMEONE ASKED EARLIER ABOUT FOR GETTING THEIR ATTENTION. AND SO THAT AS WE SAW THE PERFORMANCE ASSESSMENT THAT STARTS TO GET INTO THE AREA OF THE USE OF TECHNOLOGIES OR GENETICS, THEN I THINK YOU PROVIDE A FERTILE ENVIRONMENT FOR PEOPLE TO WANT TO ACCESS THE BEST APPROPRIATE EVIDENCE AND THEN APPLY IT. AND THAT PROVIDES, I THINK, A SIMILAR CATALYST FOR IT. THANK YOU.
THANK YOU VERY MUCH. SARAH, COMMENTS ON THIS?
JUST TO POINT OUT THAT THIS WILL BE A VERY OPPORTUNE TIME TO TAKE A SUGGESTION FROM THE SECRETARY ABOUT THAT. THE PRESIDENT HAS ACTUALLY ASKED. [ INDISCERNIBLE ]
INTRODUCES HEALTH INFORMATION TECHNOLOGIES AND SO IT WOULD BE AN OPPORTUNE THING. I DO THINK THAT THE MORE SPECIFIC THE COMMITTEE CAN BE ABOUT HOW THAT TECHNOLOGY AND GENETICS, I THINK THE BETTER -- THAT WOULD BE VERY HELPFUL.
THANK YOU.
NOT TRYING TO STIR ANYTHING UP HERE, BUT I WAS CURIOUS IN READING THE DIFFERENT COMMENTS ON THIS ISSUE OF EDUCATION, TRAINING OF HEALTH PROFESSIONALS, I WAS WONDERING WHETHER THERE'S ANY DISAGREEMENT ABOUT WHO DOES WHAT? AND THE REASON IT IS OF CONCERN TO ME IS BECAUSE IN THE AREA OF COVERAGE AND REIMBURSEMENT THAT WE'RE GONNA TALK ABOUT LATER, I KNOW WHO DOES WHAT WILL HAVE AN IMPACT ON WHETHER AN INSURER OR WHETHER A FEDERAL HEALTH PROGRAM WILL COVER AND REIMBURSE FOR PARTICULAR SERVICE. AND SO, I DIDN'T KNOW IF WE NEEDED TO GO DOWN THIS PATH OR NOT OR WHETHER EVERYONE PREFERZ WE IGNORE IT AND HAVE EVERYONE SORT IT OUT THEMSELVES, BUT THAT WAS AN ISSUE THAT POPPED INTO MY MIND. I'D LOVE TO HEAR YOUR THOUGHTS.
I JUST WANT TO SAY BRIEFLY, BACK BEFORE WHEN WE WERE TALKING ABOUT PRUDENTIALING AND YOU BASICALLY SAID THERE WERE NO NATIONAL STANDARDS IN MEDICINE, THAT'S ANOTHER ANILY TRUE IN ALL OF THE DISCIPLINES. ANY 69 PRACTICED NURSES ARE REQUIRED TO RECERTIFY EVERY THREE YEARS AND THE RECERTIFICATION USUALLY HAS BOTH A EDUCATIONAL AND CLINICAL PRACTICE COMPONENT, AND WHILE I MAY NOT BE REQUIRED TO DO MANDATORY CONTINUING EDUCATION FOR THE STATE OF VIRGINIA TO KEEP MY LICENSE, ONE OF THE THINGS I HAVE TO DO IS AN ADVANCED PRACTICE NURSE IS I HAVE TO MAINTAIN CREDENTIALS AS A CERTIFIED NURSE, AND THAT REQUIRES ME TO HAVE 45 HOURS OF CONTINUING EDUCATION EVERY FLEE YEARS AND A PRACTICE COMPONENT OF A DAY WITH PATIENT CARE DEPENDING ON MY PARTICULAR DISCIPLINE. SOME STATES, IN APRIL FOR REQUIRE,: EXAMPLE, REQUIRES 15 HOURS EVERY THREE YEARS FOR ALL NURSES TO MAINTAIN THEIR LICENSES. SO, I THINK THERE'S VARIABLITY AMONG THE PROFESSIONS, BUT TO LOOK AT THE FACT THAT THERE ARE WINDOWS OF OPPORTUNITY AT LEAST FOR SOME DISCIPLINE, TO START TO LOOK AT THE FACT THAT SHALL WE YOU KNOW, AT THIS POINT FOR EXAMPLE, AS WOMEN'S HEALTH NURSE PRACTITIONER, OF MY 45 HOURS, 30 HAVE TO BE CORE AND 15 OF THOSE HAVE TO BE SUPPORTIVE SO THAT LITE ISSUES IN NURSING, BUT 30 OF THE 45 HOURS HAVE TO BE CLINICALLY BASED, SO THAT THERE ARE OPPORTUNITIES IN SOME DISCIPLINES TO PRODUCE PROGRAMS THAT WILL BE ATTRACTIVE TO PEOPLE AND HAVE THEM OUT THERE, AND IT MAY WELL BE VARIABLE, AND EVEN THOUGH PEOPLE ARE LICENSED BY THE STATE IN NURSING, THE CREDENTIAL IS NATIONAL.
THANK YOU VERY MUCH.
THANK YOU VERY MUCH FOR ALL YOUR PRESENTATIONS THIS MORNING. HAVING MY THOUGHTS --. [ INAUDIBLE ]
I HAVE A COUPLE OF COMMENTS. YOU KNOW, WE ALL TALK ABOUT EDUCATION, AND I THINK MANY OF THE ISSUES I HEARD THIS MORNING ARE RIGHT ON TARGET, AND THERE ARE SORT OF LIKE A 2-PRONG APPROACH TO THIS, AT LEAST IN MY OWN MIND AND MAYBE SAYING THE SAME THINGS TOMORROW MORNING WHEN I TALK ABOUT THE PUBLIC HEALTH APPROACH, BECAUSE YOU KNOW ME. FIRST THING TO KEEP IN MIND IS THE ISSUE OF GENETIC DISEASES, AND THE ARRAY OF CONDITIONS THAT INDIVIDUALLY MAY BE RARE, BUT IN AGGREGATES MAY AFFECT ABOUT 5 TO 10% OF THE POPULATION, AND WE HAVE HEARD ABOUT THE DIAGNOSTIC OF DISEASE THAT COSTS MONEY AND FAMILIES AND DISRUPTION OF THE SOCIAL AND PUBLIC, BUT ALSO SOMETIMES LEADS TO MEDICAL -- MEDICAL ISSUES. DR. McCABE MENTIONED CYSTIC FIBROSIS. I COULD MENTION OTHERS THAT HAVE INTERVENTION, ONE THAT COMES TO MEAN IS A DEFECT THAT LEADS TO PRE-MATURE HEART DISEASE AND PEOPLE DIE IN THEIR 30s AND 40s 234R HEART ATTACKS. THAT'S ABOUT 1 IN 500 DISEASE. ABOUT A MILLION PEOPLE IN THIS COUNTRY MAY HAVE THAT, AND THERE ARE DATA FROM POPULATION SURVEYS THAT ABOUT HALF OR MORE OF THESE PATIENTS ARE MISSED BY THE SYSTEM BECAUSE THERE ARE SECRETARY -- SO MANY PEOPLE WITH HIGH CHOLESTEROL LEVELS DUE TO OTHER OR POLLYGENIC OR OTHER CAUSES OF HIGH CHOLESTEROL LEVELS THAT PEOPLE WITH LDL, THE DEFECTS MAY BE MISSED COMPLETELY. SO, IF NOT FOR ANYTHING ELSE, WE NEED THE KIND OF RED FLAG-RAISING. WE ARE NOT TRYING TO GET EVERYONE TO BECOME A GENETICIST, OBVIOUSLY, BUT SORT OF RAISE THE RED FLAG SO THAT CAN BE MADE, BUT COMING BACK TO WHAT I HEARD ALSO FROM THE COMMITTEE, AND I THINK DR. WHITCOMB AND OTHERS MENTIONED THE ISSUE OF RELEVANCE TODAY, BECAUSE FOR MOST PRACTITIONERS, THESE KINDS OF INCIDENTS MAY ARE TOO FAR AND TOO FEW IN BETWEEN, I GUESS. THEY MAY NOT BE SEEN BY ONE SINGLE PRACTITIONER ON ANY GIVEN DAY OR ANY GIVEN WEEK OR ANY GIVEN MONTH. SO WHAT ELSE IS GOING ON? I WANT TO PRAISE THE COMMENTS ABOUT THE FEVER. WHAT IS THE EQUIVALENT OF FEVER, AN EPISODE IN GENETICS? I MEAN, YOU MADE THE ANALOGY OF THE INFECTIOUS -- INFECTIOUS DISEASE SPECIALIST. SO YOU HAVE A PATIENT WITH FEVER AND YOU'RE NOT GOING TO REFER EVERYONE WITH FEVER TO AN INFECTIOUS DISEASE SPECIALIST, AND FEVER IS A VERY COMMON OCCURRENCE IN THE POPULATION, SO WHAT IS THE EQUIVALENT OF THAT IN GENETICS? AND TO ME, THE EQUIVALENT IS TO THE OCCURRENCE OF SOMETHING IN YOUR FAMILY, AND WE HAVE PLENTY OF DATA THAT SHOWS THE MAJOR KILLERS ARE HEART DISEASE, DIABETES, AND CANCER RUN IN FAMILIES, AND IF YOU HAVE AT LEAST ONE AFFECTED RELATIVE, YOU'RE AT RISK OF THESE CONDITIONS AND THEY MAY NOT BE BE DUE TO A SINGULAR GENE AND YOU MAY NOT HAVE TO REFER EVERY SINGLE PATIENT WITH A FAMILY HISTORY TO A GENETICIST WITH THE QIV LENT OF A FEVER BECAUSE HALF THE POPULATION MAY HAVE A FAMILY MIST -- HISTORY OF SOMETHING, AND THAT'S SORT OF BECOME THE RUN OF THE DALY -- DAILY PRACTITIONER AND THEREFORE, THE HISTORY OF GENETICS/GENOMICS/FAMILY HISTORY BECOMES AN ADDITION TO THE ISSUES OF THE SINGLE GENE -- SO, I'LL TALK MORE ABOUT THE PUBLIC HEALTH APPROACH TO FAMILY HISTORY, BUT I'M CURIOUS TO SEE WHAT THE VARIOUS ORGANIZATIONS ARE -- I KNOW SOME OF THEM HAVE DONE A NUMBER OF THINGS IN THIS AREA. I MEAN, I'D LIKE THEM TO EXPAND ON THE EQUIVALENT OF FEVER IN GENETICS, LIKE THINGS LIKE FAMILY HISTORY AND THE DEVELOPMENT OF TOOLS THAT EVERYONE CAN USE TODAY, AND WE DON'T HAVE TO WAIT TEN YEARS TO SHOW RELEVANCE OF GENETICS.
SOMEONE LIKE TO RESPOND TO THAT QUESTION? MR. McINERNY?
YES. WE DEVELOP THREE TIMES EACH YEAR A FAMILY HISTORY NEWSLETTER THAT IS DEVOTED TO EXACTLY THE ISSUES THE DOCTOR IS REFERRING TO. THIS ACTUALLY WAS A BIT OF A RETRENCHMENT FOR US. ORIGINALLY WE WERE SUPPOSED TO DEVELOP A GENERIC FAMILY HISTORY TOOL FOR USE BY ALL HEALTH PROFESSIONALS AND IT SIMPLY PROVES TO BE IMPOSSIBLE WITH THE TIME AND THE RESOURCES WE HAD AVAILABLE. SO, WE BACKED OFF ON THAT A BIT. OUR FAMILY HISTORY WORKING TO THE SPENT A FAIR AMOUNT OF TIME ON IT, BUT CONCLUDED IT IS AN IMPOSSIBLE TASK. WHAT WE DO NOW, HOWEVER, IS DEVELOP THIS NEWSLETTER WE PUT ONLINE TWO TIMES A YEAR DEVOTED ENTIRELY TO THE ISSUE OF FAMILY HISTORY AND HEALTHCARE. AND IT HAS, IT HAS ARTICLES ABOUT FAMILY HISTORY. IT ALSO REFERS TO TWO -- TOOLS OTHER PEOPLE ARE DEVELOPING, SUCH AS THE TOOL BEING DEVELOPED BY THE AMERICAN SOCIETY AND THE GENETIC ALLIANCE AND THEY'RE WORKING ON THAT NOW. SO, IN FACT, WHEN WE TALK WITH COLLEAGUES IN THE HEALTH PROFESSION, WE REFER TO THE FAMILY HISTORY OF THE FIRST GENETIC TEST. INEXPENSIVE AND RELATIVELY EASY TO DO. WE'RE ALSO BUILDING AN EXTENSIVE SECTION ON FAMILY HISTORY INTO OUR NEW CD-ROM ON THE GENETICS OF CHRONIC DISEASE, WHICH WILL BE OUT LATER THIS YEAR, AND THAT IS INTENDED FOR PRIMARY CARE PROVIDERS AND PUBLIC HEALTH PROFESSIONS. AT SOME POINT, I WOULD LIKE TO RESPOND TO THE QUESTION ABOUT IS THERE AGREEMENT ABOUT WHO DOES WHAT. I'LL COME BACK TO THAT.
THANK YOU.
I JUST WANTED TO RESPOND WITH AN ANTIDOTE ABOUT THE FAMILY HISTORY. IN RE-TOOLING OUR MEDICAL SCHOOL CURRICULUM, WE HAD A LABORATORY IN HOW TO TAKE AND HOW TO INTERPRET A FAMILY HISTORY, AND WE WERE TOLD BY THE ORGANIZERS OF THE CURRICULUM THAT THAT WAS NOT INTERESTING AND WAS SOMETHING THAT WE REALLY NEEDED TO COMPLETELY RE-THINK THE NEXT YEAR. ON THE OTHER HAND, I WOULD POINT OUT THAT I'M CHAIR OF A PEDIATRICS DEPARTMENT, I ATTEND MORNING REPORTS WHENEVER I CAN WHEN I'M IN TOWN AND I WOULD LIKE TO THINK THAT OUR RESIDENTS ARE MORE SOPHISTICATED AT A FAMILY HISTORY NOW THAN A FEW YEARS AGO BECAUSE THEY USED TO SAY IS THERE ANY FAMILY HISTORY? AND NOW IF ONE OF THEM SAYS THAT, THE OTHERS WILL CHIME IN WITH SPECIFIC QUESTIONS ABOUT WHAT THAT IS, RATHER THAN JUST DO YOU HAVE A FAMILY HISTORY OF ANYTHING, WHICH USED TO BE THE QUESTION WHICH THE USUAL ANSWER IS NO, OR SOMETHING COMPLETELY IRRELEVANT. SO, I THINK THAT IT IS SOMEWHAT ANALAGOUS TO TAKING THE TEMPERATURE, BUT IT REQUIRES A LITTLE MORE SOPHISTICATION THAN SIMPLY TAKING A TEMPERATURE, AND YET TO MANY NON-GENETICISTS, IT'S CONSIDERED BORING AND UNTRIVIAL AND UNINTERESTING.
THANK YOU. [ INAUDIBLE ]
ON THE HEALTH INFORMATION TECHNOLOGIES --. [ INAUDIBLE ]
OUR QUALITY IS LEADING KIND OF THIS EFFORT. WE FUNDED THIS YEAR $6 MILLION IN GRANTSD SPECIFICALLY TO DO TWO THINGS; ONE, TO BUILD INFRASTRUCTURE ON SMALL AND SMALL COMMUNITY HOSPITALS AS WELL AS IN RURAL SETTINGS, AND THE OTHER IS TO DEMONSTRATE THE VALUE OF HEALTH INFORMATION TECHNOLOGY TO HEALTHCARE, AND SO I THINK WE HAVE THE OPPORTUNITY TO LOOK AT THIS REALLY CLOSELY AND SEE WHERE THE OPPORTUNITIES ARE TO WHAT'S GOING ON IN GETICS, GENOMICS AND WHAT'S GOING ON IN IT AND IBM AND I'D BE HAPPY TO GO BACK TO ARC AND LOOK AT THE PORTFOLIOS WE HAVE AND WHETHER THERE ARE ANY GRANT PROJECT THAT SPECIFICALLY LOOKED AT GENOMICS AND I'D BE HAPPY. WHETHER THEY WHERE INTERESTING PROGRAMS OR INTERESTING PROJECTS, THAT WAS DIRECTLY RELEVANT TO THE WORK --. [ INAUDIBLE ]
THANK YOU VERY MUCH.
I'M JUST GONNA SAY THE OBVIOUS EYT I THINK IN TERMS OF LINKING THE NUMBER OF THE COMMENTS WE'VE HEARD. ONE, THE RANGE OF COMMENTS ABOUT THE IMPORTANCE OF GENOMISTS THAT ARE USEFUL TODAY TO THE PROVIDER. TWO, THIS CALL FOR TALKS ABOUT HOW WE MIGHT FEED INTO THE SECRETARY'S COMMITTEE ON HEALTH INFORMATION INFRASTRUCTURE, ET CETERA, AND THREE, THE IMPORTANCE OF FAMILY HISTORY. THAT THAT REALLY IS THE GENETICS POOL THAT WE CAN OFFER TODAY THAT DOESN'T ADD COST, THAT IN FACT WE THINK THERE WILL BE SOME BENEFIT. THAT REMINDS THE PRACTITIONER OF WHY THE GENETIC FACTOR IS IMPORTANT IN HEALTH AND CAN BE USED AS A BASIS TO A LOT OF THINGS, TLR THERE'S WORK OTHERS ARE DOING AS WELL TO PLAY WITH THE IDEA OF COMING UP WITH INSTRUMENTS AND OTHER KINDS OF THINGS. AND IT SEEMS TO ME IT WOULD BE USEFUL FOR THE COMMITTEE TO CALL THE ATTENTION TO THE SECRETARY OF THE OTHER COMMITTEE TO THE POTENTIAL USE OF FAMILY HISTORY. AND THE ELECTRONIC MATTER CORRECTED PARTICULARLY, IF WE COULD ESTABLISH THE IDEA THAT EVERYONE DESERVES A GOOD, RELEVANT FAMILY HISTORY AND A CHRONICLE RECORD, WE WILL HOOK ON A GOOD THING FOR PATIENTS, BUT WE WILL ALSO HAVE ESTABLISHED A TEMPLATE FOR PROVIDERS TO IT BE TO THINK ABOUT OTHER MORE SOPHISTICATED GENETICS TESTING, THOSE KINDS OF THINGS, ONCE THEY BECOME MORE BROADLY AVAILABLE AND USEFUL. I WOULD THINK THAT WOULD BE AN OBVIOUS FIRST STEP TO TAKE.
THANK YOU VERY MUCH.
I THINK I GREATLY AGREE WITH THE COMMENTS ALLEN JUST MADE. I THINK ONE OF THE ISSUES THAT KEEPS COMING BACK TO ME ABOUT GENETIC TESTING AND I'M NOT TALKING ABOUT DIAGNOSTIC GENETIC TESTING IN THE CONTEXT OF SIGNS AND SYMPTOMS AS MUCH AS PRE-SYMPTOMATIC TESTING OR MAINTENANCE OF INFORMATION AT CARRIERS STATUS, IS THAT A LOT OF THIS INFORMATION MIGHT BE LOST BETWEEN THE TIME THE TEST IS DONE AND THE TIME THE INFORMATION IS ACTUALLY NEEDED AT SOME FUTURE DATE. AND I THINK IT'S VERY IMPORTANT THAT AS WE START TO CONSIDER MOVING INTO THE ELECTRONIC AGE AND DOING ELECTRONIC MEDICAL RECORDS AND HAVING AN IT INFRASTRUCTURE FOR THAT, THAT WE HAVE FAMILY HISTORY, WE HAVE A MECHANISM FOR RECORDING ANY ONCE IN A LIFETIME GENETIC TEST THAT SOMEONE IS GIVEN, SO THAT THAT INFORMATION IS THERE, AND I'LL SAY THAT'S SOMETHING AS SIMPLE AS BLOOD TYPE, AND TO THINGS AS COMPLICATED AS YOU KNOW, GENETICS DRUG METABOLISM ENZYMES THAT MIGHT BE USEFUL AT MULTIPLE TIMES IN A PERSON'S LIFETIME. SO, I WOULD BE VERY INTERESTED AS A COMMITTEE IN HEARING FROM THIS OTHER GROUP WHAT THEY'RE DOING, HOW WE COULD INTEGRATE THESE THINGS TOGETHER, BECAUSE I THINK THE COMBINATION OF THOSE TWO ACTIVITIES WILL HELP US TO INTEGRATE GENETICS INTO THE PRACTICE OF MEDICINE. THE THIRD POINT THAT WE HAVE TO TALK ABOUT IS THAT THERE IS STILL A TURN -- AND THIS WAS MENTIONED AT THE BREAK -- ABOUT HAVING THE MEDICAL INFORMATION IN YOUR MEDICAL RECORDS THAT SOME PHYSICIANS STILL MAINTAIN YOUR GENETIC RECORDS WITH A SEPARATE PARALLEL FILE FROM YOUR ACTUAL PATIENT RECORDS, SO WE NEED TO DEAL WITH THAT ISSUE, YOU KNOW, WHY IS THAT STILL AN ISSUE OR --. [ INAUDIBLE ]
INSURANCE, HEALTH, LIFE, EMPLOYMENT OR YOU KNOW, WHAT'S THE REASON THAT THAT STILL HAPPENS, THAT THAT'S CERTAINLY A BARRIER TO BEING INTEGRATED CHART MEDICAL RECORDS THAT CAN BRING YOU THE FULL BENEFITS OF A GENETIC TEST, RATHER THAN HAVING TO HIDE THAT INFORMATION AND THEN HAVE IT RE-DONE EVERY TIME YOU NEED IT. SO YOU KNOW, THAT WON'T DEAL WITH -- THAT WON'T DEAL WITH THE SITUATIONS WHERE THERE ISN'T A FAMILY HISTORY. WE STILL HAVE TO TRAIN MEDICAL PROFESSIONALS TO RECOGNIZE IN THE ABSENCE OF FAMILY HISTORY, WHAT HAPPENS IN A LOT OF RARE GENETIC DISORDERS, THAT THE PROBABILITY OF TWO TERRIERS COMING TOGETHER IS LOW, SO QUITE OFTEN THEY DON'T HAVE ANY FAMILY HISTORY AND THAT'S WITH CHILDREN WITH DISORDERS, SO I THINK WEATHER OF THOSE THINGS ARE VERY IMPORTANT FOR US TO KEEP IN MIND.
THE QUESTION IS, YOU TALK ABOUT THIS INFORMATION AND ARE THERE QUESTIONS WITH REGARDS TO CONFIDENTIALALITY AND SHARING OF INFORMATION AND REMINDING YOU SOMEWHAT OF OF THE SOME COMMENTS FROM DR. DUNSTON AND YOUR PUBLIC VIEW OF THIS INFORMATION AND HOW IT IS SHARED AND CONCERNS FROM SPECIAL POPULATIONS IN TERMS OF HOW THIS INFORMATION IS SHARED. [ INAUDIBLE ]
IN TERMS OF WHAT PEOPLE WANT IN THE MEDICAL RECORDS -- FOR WOMEN THAT I WORK WITH FOR EXAMPLE, LOTS OF FOLKS DON'T WANT TO ACCEPT ORIENTATION IN THEIR MEDICAL RECORDS. SO I THINK WHEN WE START TO LOOK AT DIFFERENT INFORMATION THAT IS POTENTIALLY LABELING, THIS GENETICS INFORMATION AND A WHOLE LOT OF OTHER INFORMATION TOO, AND I'M NOT SURE ALL OF THE PRIVACY PROTECTIONS THAT HAVE BEEN LOST AND ARE CHALLENGING TO IMPLEMENT NECESSARILY HELP PEOPLE IN TERMS OF THE FEAR OF WHAT'S IN THEIR RECORD OR WHAT IS NOT IN THEIR RECORD, AND I GUESS I WORRY ABOUT THE FACT THAT WE HAVE A SYSTEM THAT HAS CREATED THE NEED FOR PEOPLE TO WANT INFORMATION BE EXCLUDED FROM THEIR MEDICAL RECORD. SEVERAL YEARS AGO I WENT TO ICELAND AND WAS TALKING TO THE PRESIDENT OF ICELAND ABOUT THE ISSUE OF PRIVACY, CONFIDENTIALITY, HE BASICALLY LOOKED AT ME AND SAID THAT'S NOT AN ISSUE IN OUR COUNTRY BECAUSE WE'RE A DEMOCRACY AND PEOPLE TRUST THE GOVERNMENT. AND I THOUGHT WOW! HOW U NEEMTION AND -- UNIQUE AND WONDERFUL! AND FOR WHATEVER REASON, WE HAVE CREATED A CLIMATE OF DISTRUST IN THIS COUNTRY, NOT THOSE SITTING AROUND THIS TABLE, BUT THE SYSTEM HAS CREATED A CLIMATE OF DISTRUST AND PEOPLE NEED TO KEEP PRIVATE INFORMATION PRIVATE. SO, I THINK THE PROBLEM IS EVEN MORE ROOTED THAN GENETIC INFORMATION. I THINK IT'S INFORMATION OF THE FACT THAT PEOPLE HAVE BEEN TREATED BADLY, AND ONCE PEOPLE HAVE BEEN TREATED BADLY OR GROUPS OF PEOPLE HAVE BEEN TREATED BADLY, THEN WE HAVE A LOT OF WORK TO DO, BECAUSE ONCE TRUST IS LOST, IT BECOMES TWICE AS HARD TO REGAIN. AND SO, I MEAN, I DO WORRY ABOUT PEOPLE WHO HAVE CONCERNS ABOUT KEEPING THEIR INFORMATION OUT OF THEIR MEDICAL RECORD AND YOU KNOW, WHY.
I JUST WANT TO EXTEND SOME OF THE IDEAS THAT WE PUT FORWARD AROUND WHERE THIS COMMITTEE MAY WANT TO CONSIDER INTERFACING WITH THE SECRETARY OF HEALTH INFORMATION TECHNOLOGY INITIATIVE. FROM THE LESSONS OF A DEPARTMENT THAT HAS A INTEGRATED HEALTH INFORMATION, ELECTRONIC HEALTH RECORDS AVAILABLE AT THE BEDSIDE FOR PATIENTS, SOME OF THE ISSUES THAT YOU MAY WANT TO CONSIDER ALONG THE FOLLOWING LINES: ONE IS CERTAINLY AT PROPOSING WHAT ELEMENTS OF GENETIC KNOWLEDGE SHOULD BE PART OF THE BASIC COMPONENTS OF THE ELECTRONIC HEALTH RECORDS. THAT'S ONE OF THE DECISIONS GOING ACROSS THE AGENCY AT THIS TIME, FAMILY HISTORY COULD CERTAINLY BE SOMETHING THAT'S CONSIDERED IF YOU'RE OUT THERE, A TECHNOLOGY DEVELOPER, YOU SHOULD CERTAINLY PUT THAT CAPABILITY INTO WHATEVER SYSTEM THAT YOU'RE DEVELOPING, BUT I THINK IT WOULD ALSO BE HELPFUL TO PICK THE OTHER KIND OF TESTING KNOWLEDGE THAT SHOULD BE PART OF THE BASIC RECORD AND PART OF THE RECOMMENDATION THAT SOME OF THE DEPARTMENTS AND OTHERS ARE LOOKING AT THE THIS TIME. IN ADDITION, IN A MORE FUTURE-LOOKING SUPER -- PERSPECTIVE, TO THINK ABOUT ONCE THEY HAVE THE RECORDS AT THE BEDSIDE AND HAVE THE INTERACTIVE CAPACITY WITH THOSE PROGRAMS, WHAT ARE THE GUIDELINES ON A DAILY BASIS WOULD BE HELPFUL FOR THE PRACTITIONERS, GETS A LITTLE BIT AT HOW MUCH KNOWLEDGE DOES EVERY PRACTITIONER NEED TO HAVE? IF YOU CAN BUILD IN SOME OF THAT KNOWLEDGE AND REMINDER TO THE AUTOMATED SYSTEMS, THEN YOU DON'T HAVE TO MAKE ALL THE EFFORTS, MAKE SURE THE PRACTITIONER KNOWS EVERY BIT OF INFORMATION, BUT CERTAIN DIAGNOSES AND CONDITIONS COME UP, ONCE PUT INTO THE RECORD. THERE'S AN ELECTRONIC PROMPT THAT SAYS WHAT ABOUT THIS? OR YOU MAY WANT TO CONSIDER THIS, THAT WOULD BE HELPFUL IN HELPING THIS ENTIRE ENTERPRISE AROUND HEALTH INFORMATION TECHNOLOGY BEGIN TO MAP OUT WHERE THEY MAY NEED TO PUT THAT KIND OF INFORMATION INTO THE RECORD OVER THE NEXT FIVE TO TEN YEARS. I THINK IT WOULD BE EXTREMELY HELPFUL TO THE PROFESSIONAL SOCIETY, CERTAINLY THAT'S THE ROLE MANY OTHER PROFESSIONAL SOCIETIES ARE PLAYING AT THIS TIME IN THAT ARENA, IS PROVIDING INFORMATION AND GUIDELINES THAT IN-- TEND TO BE INCORPS -- INCORPORATED INTO THE SYSTEM. FINALLY, AN AREA THAT I THINK BOASTS FOR GENETIC GENOMICS AS WELL AS THE REST OF THE FABULOUS KNOWLEDGE THAT'S COMING OUT OF NIH AT THIS TIME IS HOW DO YOU INCORPORATE KNOWLEDGE MANAGEMENT SYSTEMS INTO A DESK TOP ELECTRONIC MEDICAL RECORDS SYSTEMS? WHAT DO I MEAN BY THAT? WELL, YOU CAN'T OVERWHELM A PRACTITIONER WITH ALL SORTS OF PROMPTS AND GUIDELINES. WE HAVE CERTAINLY FOUND WITHIN THE VA THAT AFTER A CERTAIN NUMBER OF PROMPTS THAT PHYSICIANS STARTS TO TURN OFF THE PROBLEM. SO, IN ANY ONE VISIT, YOU CAN'T HAVE TOO MANY THINGS COMING UP ON THE SCREEN AT THE SAME TIME. BUT YOU CAN THINK ABOUT A WAY WHERE WHEN YOU HAVE A PARTICULARLY DIFFICULT CASE AND YOU'RE NOT ABLE TO DIAGNOSE WHAT'S WRONG WITH THE PATIENT IN FRONT OF YOU, IF THERE'S ACCESS ON THAT DESK TOP TO INFORMATION, ABILITY TO QUERY BASED ON THE DIAGNOSIS IN FRONT OF YOU, IT CAN HELP PHYSICIANS AND OTHER PRACTITIONERS SEEK OUT INFORMATION AND HER HAPPENS -- PERHAPS ASSIST THEM IN UNDERSTANDING THE CONDITIONS OF THE PATIENTS THAT SITS THERE IN FRONT OF THEM. SO THOSE ARE JUST SOME OF THE IDEAS THAT THE COMMITTEE MAY WANT TO CONSIDER IN THIS INTERFACE.
THANK YOU VERY MUCH.
THANK YOU. I HAVE A NUMBER OF THINGS AND SOME OF IT GOES BACK TO THE BROADER ISSUES BROUGHT UP IN THE ORIGINAL PRESENTATION, WHICH I'D LIKE TO COMMEND THAT IF YOU LOOKED AT WHAT IS COMMON ACROSS THE DISCIPLINES, THIS IS TRULY IN A DISCIPLINARY ISSUE AND THAT WE'RE REALLY TALKING ABOUT QUALITY OF CARE AND ACCESS, AND THE WAYS IT COMES FORWARD AND IS VIE IMPORTANT. MANY OF THE THINGS YOU BROUGHT FORWARD ARE CONSISTENT WITH THE REPORT, WHICH RECOMMENDATIONS WE'LL BE TAKING IN JUST A FEW WEEKS AFTER DOING AN ANALYSIS ACROSS ALL OF OUR AGENCY ABOUT GENETICS ACTIVITIES. BUT, WHAT I'M HEARING IS THE KEY ISSUE OF COMMUNICATING WHAT IS AVAILABLE TO SUPPORT THE INTEGRATION OF THE GENETIC PRACTICE RESEARCH AND EDUCATION. AND AGAIN, PART OF WHAT I SEE IN THE ROLE WORKING WITH FEDERAL AND NON-FEDERAL PARTNERS IS THAT WE CAN FACILITATE AND WE HAVE THE MECHANISMS THAT WE CAN HELP IN MOVING FORWARD WITH THAT, AND WE DO HAVE SEVERAL ACTIVITIES, INCLUDING WE DO FUND THE TOOLS OF CONTRACTS WITH THE UNIVERSITY OF WASHINGTON, AND THIS DOES EMPHASIZE CURRENT CLINICAL AP KABULITY AS AN EXAMPLE, ALSO, THE GENETICS PRIMARY CARE PROGRAM WE'VE HAD FOR SEVERAL YEARS IS THE FOCUS OF THAT, IS GETTING THAT INTO PRACTICE, BUT -- AND I CAN GIVE YOU SEVERAL OTHER EXAMPLES -- BUT THE ISSUE IS HOW DO WE DISSEMINATE THAT? HOW DOES THAT GET BROUGHT FORWARD TO ACROSS ALL THE DISCIPLINES, WHETHER YOU'RE AN ACTIVE COLIN YITIONS OR AN EDUCATOR? AND THAT'S A KEY ISSUE WHICH PERHAPS THIS COMMITTEE CAN LOOK AT IN THE FUTURE AS AN ISSUE OF THE NEXT STEPS OF WHERE WE GO, BUT IN STEPPING BACK, SOME OF THE ACTIVITIES IN CURRENT MECHANISMS WE HAVE WITHIN HERSA (PHONETIC) ARE TO -- WE HAVE PROGRAMS THAT CAN LOOK AT CULTURAL COMPETENCIES AND WE HAVE FUNDING AND PROGRAMS AND THE OFFICE OF MINUTE HEALTH AND THAT MAY BE A HELP IN WHAT YOU'RE TALKING ABOUT. WE ALSO HAVE RESPONSIBILITY IN WORK FORCE DIVERSITY AND HAVE PROGRAMS WITHIN THE BUREAU OF HEALTH PROFESSIONS THAT AGAIN, CAN BE TAPPED INTO, PERHAPS, AND INFORMED TO MOVE IN THIS DIRECTION. ALSO, WE HAVE PROGRAMS LOOKING AT THE PIPELINE FOR THE WORK FORCE, WHETHER IT'S A SPECIALIST OR ADRENALINE, SO, AGAIN, THIS IS A REMINDER THAT WE DO HAVE SOME STRUCTURES WITHIN OUR AGENCY IN WORKING WITH OUR FEDERAL AND NON-FEDERAL PARTNERS THAT PERHAPS WE CAN ADDRESS SOME OF THE ISSUES THAT YOU BROUGHT UP IN YOUR ORIGINAL REPORT. ONE OF THE THINGS, WE JUST HAD A MEETING ON THURSDAY LOOKING ACROSS INFORMATION CAPACITY IN OUR HEALTH CENTER AND AS YOU MAY KNOW, WE SERVE 12.5 MILLION PATIENTS IN 3500 SITES IN OUR FEDERALLY-SUPPORTED HEALTH CENTER, ALTHOUGH WE'RE ONLY ON AVERAGE 25% OF THE FUNDING FOR THE HEALTH CENTERS. WE CAN INFLUENCE SOME OF THE DIRECTION. ONE OF THE THINGS WE'RE WORKING ON WITHIN OUR HEALTH CENTERS IS THE I BASE INTO THE LATEST SCIENCE, WHICH WE DO THROUGH OUR HEALTH COLLABORATIVE, WHICH THAT'S WITH SOME OF THE ACTIVITIES THAT YOU'RE TALKING ABOUT. SO AGAIN, IF YOU CAN HELP FACILITATE IN A VARIETY OF WAYS SOME OF THE ISSUES WE HAVE BROUGHT FORWARD FOR REVIEW.
THANK YOU VERY MUCH.
I URGE THE COMMITTEE IN ITS DELIBERATIONS TO -- AND I'M QUOTING FROM A FRIEND FROM A CONFERENCE I WAS AT RECENTLY -- DON'T LET THE PERFECT GET IN THE WAY OF THE GOOD. AS FAR AS CYNTHIA BERRY'S QUESTION ON WHO'S GOING TO DO THIS AND ARE PEOPLE GETTING IN EACH OTHER'S WAY AND ARE WE STEPPING ON TOES? AT THIS POINT IN TIME, IT SEEMS TO ME THAT THERE IS SO MUCH TO BE DONE AND THERE ARE IN FACT FROM A GENETICS POINT OF VIEW SO FEW OF US TO CONTINUE TO DO IT, WORK FORCE ISSUES BEING ONE OF OUR ISSUES THAT FROM THE EDUCATIONAL POINT OF VIEW THAT IS NOT OUR PRIMARY ISSUE. IT WILL BE AN ISSUE IF THE QUESTION IS WHO IS RESPONSIBLE FOR ALL THIS EDUCATION WITHOUT DEDICATED RESOURCES TO GET IT ACCOMPLISHED. SO, AS LONG AS WE CAN CONTINUE TO GENERATE POSSIBLE RESOURCES FROM FEDERAL AGENCIES OR FROM WITHIN INSTITUTIONS, THEN, I THINK EXACTLY WHO IS GONNA DO WHAT IS NOT OUR BASIC QUESTION. I THINK WE HAVE GENERATED SEVERAL MODELS WHERE WE'RE WORKING IN CONSTANT WITH EACH OTHER. THE OTHER POINT THAT I WOULD MAKE, AND WE'VE GOTTEN SOME VERY SOPHISTICATED COMMENTS ABOUT FAMILY HISTORY AND MEDICAL RECORD AND SPECIFIC COMPS AND ALL OF THOSE THINGS, BUT I WOULD IM-- SIMPLY REMIND FOLKS THAT FROM THE APPROACH OF THE GENETIC ALLIANCE, THE SOCIETY OF GENETIC COUNSELORS AND THE MESH SOCIETY OF GENETICS HAVE TAKEN IN THE DEVELOPMENT OF A GENERIC FAMILY, TO REMIND PEOPLE THAT IT IS THE CONSUMERS' INFORMATION, AND IT IS THE CONSUMERS' RESPONSIBILITY TO GATHER THAT INFORMATION TO PROVIDE IT TO THE PROVIDER NO MATTER WHO IT IS. THERE IS NO BLOOD TEST, THERE IS NO FINGERPRINT, THERE IS NO WAY THAT ANY PROVIDER CAN GET THE INFORMATION WITHOUT ENGAGING THE CONSUMER THEMSELVES. SO, IN FACT, THE APPROACH THAT WE HAVE KIND OF BUILT OUR STRATEGY ON IS LET'S GET THE CONSUMER, LET'S GET THE GENERAL PUBLIC EXCITED ABOUT THEIR OWN FAMILY HISTORY AND INFORMATION, SP OF WHICH AT LEAST MAY BE MEDICALLY-RELEVANT, AND AS THEY BRING THAT TO THEIR PROVIDER -- WHATEVER THE PROVIDER'S CREDENTIALS ARE -- THEN, IN FACT, THEY WILL INITIATE AND ENGAGE THE PROVIDER. AND IF THE PROVIDER HAS THE GENERIC READINESS --. [ INDISCERNIBLE ] THEY WILL BE MUCH MORE READY TO ACCEPT AND INTERPRET THAT INFORMATION CORRECTLY, BUT WE'VE IN FACT NOT DIRECTLY ADDRESSED THIS MOST PERFECT GENETIC OR FAMILY HISTORY TOOL AND WE ARE WORKING WITH OTHER ORGANIZATIONS TO TRY AND GET THEM DOWN TO THE BASICS, BUT IN MANY SITUATIONS, WE WOULD TAKE ALMOST ANY INFORMATION THAT WE COULD GET AS A STARTING POINT, AND I ONLY REFER OR REMIND PEOPLE THAT MANY OF THE BEST GENETIC STUDIES HAVE GONE BACK TO FAMILY BIBLES, AND THE INFORMATION THAT THE FAMILY HAD TO BEGIN WITH TO IN FACT SPAWN OUR INFORMATION --. [ INAUDIBLE ]
THANK YOU VERY MUCH. MR. McINERNY, YOU MENTIONED EARLIER YOU WANTED TO COMMENT ON WHO SHOULD BE DOING WHAT. IF YOU COULD SPEAK TO THAT AND ALSO IN SOME OF YOUR WRITTEN COMMENTS AS FAR AS THE RECOMMENDATIONS, YOU HAD MENTIONED PUBLIC EDUCATION THAT PROVIDES KNOWLEDGE AND SKILLS TO CONSUMERS REQUIRING FOR ENVIRONMENTS TO PARTICIPATE IN THE HEALTH PROFESSIONALS INDUSTRY IN THAT FORMED GENETIC PERSPECTIVE THAT FALLS NICELY INTO THE COMMENTS -- IF YOU CAN SPEAK TO THOSE.
YES, THANK YOU. THEY COVERED THE FIRST POINT I WAS GOING TO MAKE, BUT I'LL TELL YOU A QUICK STORY. THAT IS, WHEN WE FIRST PUBLISHED THE CORE COMPETENCIES IN JANUARY OF 2001, WE HEARD A LOT OF COMPLAINTS FROM PEOPLE IN THE GENETICS COMMUNITY THAT THESE COMPETENCIES WERE TRYING TO TURN ALL HEALTHCARE PROFESSIONALS INTO GENETICISTS. AND I SUSPECTED THAT THAT WAS NOT LIKELY TO HAPPEN TO BEGIN WITH, AND IN FACT, IT HASN'T PLAYED OUT THAT WAY. I WILL SAY THAT THE COMPETENCIES ARE CHALLENGING. WE ASK A LOT OF HEALTH PROFESSIONALS IN THOSE COMPETENCIES, BUT WHAT WE'VE HEARD IN THE SUBSEQUENT 3 1/2 YEARS, ROUGHLY, IS THAT HEALTHCARE PROFESSIONALS ARE QUITE FANGUENT ABOUT THEIR LIMITATIONS OF KNOWLEDGE AND IN PRACTICE. AND THEY NEED TO KNOW HOW MUCH THEY NEED TO DO TO INCORPORATE GENETICS SUCCESSFULLY INTO THEIR OWN PRACTICE AND WHEN NECESSARY, THEN HAND THAT OFF TO SOMEBODY ELSE. AND WHAT WE'VE FOUND IS THAT PEOPLE ARE USING THE COMPETENCIES IN THAT WAY. THEY'RE THINKING CAREFULLY ABOUT HOW GENETICS MANIFESTS ITSELF IN THEIR OWN PRACTICE AND IN PICKING AND CHOOSING THE COMPETENCIES APPROPRIATE. SO, I THINK THAT THAT ISSUE HAS RESOLVED ITSELF, PERHAPS ONLY FOR THE MOMENT, BUT I THINK IT HAS RESOLVED ITSELF. THE ISSUE OF WHO PAYS FOR WHAT, WHO DELIVERS THE GENETIC SERVICES IS AN ENTIRELY DIFFERENT ISSUE AND ONE THAT I'M NOT EVEN REMOTELY QUALIFIED TO ADDRESS, BUT FROM AN EDUCATIONAL STANDPOINT, THE OTHER STORY SHOULD SERVE AS A HELPFUL GUIDE WITH RESPECT TO MY PROPOSED RECOMMENDATION, OR PROPOSED ADDITION TO THE RECOMMENDATION YOU WANT TO TAKE TO THE SECRETARY, IT JUST STRIKES ME -- AS I SAID TO THE COMMITTEE WHEN I TESTIFIED HERE AT THE LAST MEETING -- THAT WE CAN'T THINK ABOUT EDUCATION AS HEALTH PROFESSIONALS IN THE ABSENCE OF EDUCATION OF THE PUBLIC, PARTICULARLY IF THE ASSUMPTION IS THAT GENETICS ULTIMATELY IS GOING TO MOVE HEALTH CARE MORE AND MORE TOWARDS A PREVENTION-BASED PARADIGM. THAT'S SOMETHING WE'VE ALL HOPED-FOR-A VERY, VERY LONG TIME, AND FOR ME, THE NOTION OF PREECHINGS HAS AULD IMPLIED A PARTNERSHIP BETWEEN THE PATIENT AND PROVIDER, AND IF WE'RE GOING TO HAVE AN EFFECTIVE PARTNERSHIP, BOTH PARTNERS HAVE TO BE WELL EDUCATED, AND THE EDUCATION I THINK FOR THE PUBLIC HAS TO PRECEDE FROM THE SAME SET OF ASSUMPTIONS ABOUT GENETICS THAT WE USE FOR HEALTHCARE PROFESSIONALS. DETAILS WILL DIFFER, BUT I THINK THE SET OF CON KEPT YULE ASSUMPTIONS HA HAS TO BE CONSISTENT WITH THE HEALTHCARE PROFESSIONALS.
I WANTED TO UNDERSCORE A POINT MADE EARLIER TO ABOUT THE IMPORTANCE OF GETTING THE CONSUMER INVOLVED AS PART OF THIS TRANSITION, BUT I WANTED TO PRACTICE MY COMMENTS BY SAYING THAT I STARTED BY BEING INSTRUCTED THAT THIS COMMITTEE IS GENETIC, HEALTH, AND SOCIETY, AND NOT GENETIC, DISEASE, AND MEDICINE. INSTRUCTORS IN THE SENSE THAT I THINK THAT ENGAGEMENT OF THE CONSUMER IN WHY THEY NEED TO BE ENGAGED IN UNDERSTANDING THE KNOWLEDGE, PARTICIPATING IN THE RESEARCH, ET CETERA, IS A CHALLENGE THAT'S PART OF WHAT I LIKE TO CALL THE VERY POSITIVE POTENTIAL OF GENOMICS. IN THAT THIS SEEMS TO BE A -- A TIME WHEN THE GENOMIC TECHNOLOGY, ALL FOR AN OPPORTUNITY TO UNDERSTAND DISEASE AS A BIOLOGICAL LEVEL THAT REQUIRES THE PARTICIPATION OF THE CONSUMER, PARTICIPATION OF THE NON-PATIENT, FAMILY HISTORY, MUST ENGAGE THOSE WHO ARE NOT COMING TO THE ATTENTION BECAUSE OF THE DISEASE. THE ABSOLUTE NECESSITY OF PUBLIC EDUCATION SO THAT WE CAN GET PARTICIPATION STARTS TO REALLY UTILIZE THE POWER OF GENOMICS AND UNDERSTANDING BIOLOGY, IS A CHALLENGE THAT I THINK IS PUTTING PUBLIC HEALTH IN THE FOREFRONT AND THE NECESSITY OF THE CONSUMER AND THE POPULATION BOTH THOSE AFFECTED AND NON-AFFECTED WITH DISEASE ARE INTEGRAL TO UNDERSTANDING THE BIOLOGY OF DISEASE IN WAYS THAT THE CHALLENGE TO ME WOULD BE TO TAKE EVERYTHING WE HAVE LEARNED ON THE NEGATIVE SIDE, IF YOU WILL, FROM GENETICS WITH DISEASE AND MEDICINE, AND ENSURE THAT LAWS ARE PUT INTO PLACE NOW THAT WOULD AT BEAST MINIMIZE THE EXPLORETIVE AND MANIPULATIVE ISSUES THAT WOULD KEEP THE PUBLIC FROM PARTICIPATING IN THE RESEARCH THAT IS ABSOLUTELY NECESSARY TO REALLY USE THE POWER OF GENOMICS TODAY TO UNDERSTAND BIOLOGY. SO, ON THE ONE HAND, WE CAN TAKE WHAT WE'VE LEARNED DURING THE ERA OF GENETICS THAT MAY SERVE AS THE BASIS FOR THE PUBLIC BEING FEARFUL, AND LOOK AT THE LAWS. THERE IS AN EMPHASIS ON THE NON-DISCRIMINATORY ACTS. WE CAN ASK WHAT ARE THE THINGS THAT WERE WRONG WITH THE WAY WE USED GENETICS BEFORE? AND WHAT DO WE NEED TO PUT IN PLACE AT OUR BEST TO MINIMIZE THAT OCCURRENCE SO THAT THE SCIENCE CAN MOVE FORWARD IN A WAY THAT THE PUBLIC WILL WANT TO PARTICIPATE? AND I REALLY UNDERSCORE THE IMPORTANCE OF RESEARCH THAT ENGAGES THE PUBLIC, ENGAGES THE NON-AFFECTED AS WELL AS THE AFFECTED AS ESSENTIAL TO GETTING THE BENEFITS OF HOW WE UNDERSTAND OUR GENETICS TODAY. I THINK THAT LASTLY, THAT FOR THE PUBLIC TO UNDERSTAND THAT THE POWER OF GENETICS NOW, OR GENOMICS, LARGE-SCALE, INFORMATION TECHNOLOGY-DRIVEN, SCIENCE, TO KEY OUT THE UNDERLYING BIOLOGY THAT'S RELATED TO DISEASE REQUIRES PUBLIC PARTICIPATION. SO, THE QUESTION BECOMES: WHAT DO WE NEED TO PUT IN PLACE WITH OUR LAWS, WITH OUR POLICIES, WITH OUR EDUCATION THAT WILL ENSURE THAT WE DO A PR JOB FOR WHAT THE POTENTIAL OF GENOMICS IS, IS ONE THAT WE ARE CONCERNED ABOUT A WHOLE TETERY OF THINGS TO PRESENT DISCRIMINATION, BUT WHAT DO WE NEED TO DO TO PROTECT OUR PRIVACY, TO PROTECT CONFIDENTIALITY, AND THOSE ARE ISSUES DRIVEN MORE BY HOW DO WE GET THE PUBLIC EXCITED ABOUT THE POWER OF SCIENCE TODAY TO HELP US UNDERSTAND DISEASE IN A WAY THAT HAS WHOLE NEW APPROACHES TO PREVENTION AND FOR MODERN HEALTH? THANK YOU.
I THINK THAT'S A TERRIBLY IMPORTANT POINT. BECAUSE IF WE ARE TO REALLY UTILIZE THE POWER OF GENETICS, THEN WE WILL NEED LARGE POPULATIONS STUDIES, AND WE'LL BE TALKING ABOUT THAT MORE. BUT GIVEN THAT THE UNIQUE GENOTYPES, WHOLE GENOME GENOTYPES THAT INDIVIDUAL PATIENTS WILL HAVE WILL BE RELATIVELY RARE IF WE'RE REALLY TO DEVELOP THE CORRELATIONS, WE WILL NEED THOSE LARGE POPULATION-BASED STUDIES. I THINK IT'S ALSO IMPORTANT THAT YOU TRY TO CHOOSE THE GENETIC NON-DISCRIMINATION, AND AN ACT THAT WAS DISCUSSED AT THE BEGINNING, BECAUSE UNTIL OUR PATIENTS THINK THEY CAN BE SAFE WITH GENETIC KNOWLEDGE IN THEIR MEDICAL CARE, THEY'RE NOT GONNA FEEL SAFE IN THE RESEARCH OR FLING ELSE. IF THEY UNDERSTAND THAT THE RESEARCH IS TO IMPROVE THEIR CARE, AND NOT TO BE USED IN A DISCRIMINATORY FASHION, BECAUSE THAT IS OUTLAWED, THEN I THINK THAT THEY WILL FEEL FAR MORE SECURE IN GAINING THAT KNOWLEDGE ABOUT THEMSELVES. SO I AGREE WHOLEHEARTEDLY WITH YOUR POINTS.
THIS IS REID -- ON THE LIST ALSO. [ INAUDIBLE ]
GO AHEAD.
OKAY, 2456K YOU. TWO THINGS. I THINK IT WAS VERY HELPFUL TO HEAR THOSE LAST COMMENTS. ONE OF THE THINGS I'M IMPRESSED BY, PARTICULARLY BY PEOPLE EVEN ON OUR COMMITTEE AND MANY OF THE PEOPLE WHO HAVE TESTIFIED IS HOW SOPHISTICATED ARE FAMILIES WHO ARE GOING THROUGH THE EXPERIENCE OF GENETIC DISORDERS AND DISEASES, HOW QUICKLY THEIR LEARNING CURVE REACHES FAIRLY IMPRESSIVE LEVELS. WITH THAT IS A HOPEFUL SIGN. I'M ALSO, THOUGH, FACED EVERY DAY WITH THE REALITY OF JUST HOW TOUGH IT IS TO GET ANY LEVEL OF UNDERSTANDING ABOUT HEALTH AND DISEASE IN THE GENERAL AMERICAN POPULATION. IF YOU EVEN JUST -- GIVEN AN EXAMPLE LIKE OBESITY. YOU KNOW, IT'S A DEVIL OF A TIME TRYINGING TO EDUCATE PEOPLE IN OUR COUNTRY ABOUT YOU KNOW, THE IDEOLOGY AND OTHER THERAPEUTIC ISSUES REGARDING SOMETHING AS COMMON PLACE AS THAT DISEASE AND DISORDER. IF YOU THINK EVEN OF THE PATIENTS CURRENTLY DIAGNOSED FOR HYPERTENSION. MY POINT IS THAT I THINK THAT WHILE THIS IS AN IMPORTANT AREA THAT WE HAVE UNDERSCORED, I THINK THAT THIS COMMITTEE IS GOING TO BE CHALLENGED BY TRYING TO THINK OF WHAT THE PROBLEMS ARE IN THIS AREA. WE OBVIOUSLY CANNOT REORDER ALL THE LITERACY IN THE COUNTRY. IN FACT, IF YOU LOOK AT THE SCIENCE OF LITERACY, THE AMERICAN POPULATION, IT'S STAGGERINGLY LOW. SO I WONDER WHETHER WE MIGHT START TO AT LEAST BEGIN TO DISCUSS DRILL DOWN THE KEY PRIORITY AREAS THAT WE THINK WE CAN MEANINGFULLY, THROUGH THE POWER OF THE SECRETARY, ACTUALLY DO SOMETHING ABOUT. SECONDLY AND FINALLY, I JUST WANTED TO BRIEFLY GET AT THIS IDEA OF WHO DOES WHAT, AND WHAT THOSE COMPETENCIES ARE THAT JOANN AND OTHERS TALKED ABOUT. I HOPE WE CAN ALSO GET THROUGH THIS IDEA OF DEFINING WHAT NEEDS TO BE DONE, AND THEN START TO FIGURE OUT WHO -- WHAT IS THE FULL RANGE OF COMPREHENSIVE PATHS AND THEN START TO DETERMINE WHAT IS THE INNERRELATIONSHIP BETWEEN DIFFERENT PARTS OF THE HEALTHCARE SYSTEM AND THE VARIOUS PROFESSIONAL AND MAYBE EVEN NON-PROFESSIONAL DISCIPLINES THAT HAVE AN OPPORTUNITY THEN TO PLAY A ROLE IN THAT. AND I THINK IF WE TALK FURTHER ABOUT IT, I HOPE WE CAN GET MORE SPECIFIC. THANKS.
THANK YOU VERY MUCH IN THE INTEREST OF TIME, I'D LIKE ANY COMMENTS, QUESTIONS WITH REGARD TO THE RECOMMENDATIONS FOR RESOLUTIONS. ADDITIONS? PARTICIPANTS?
WELL, THE RECOMMENDATIONS THAT I HAD IN COMMENTS RELATE TO MY EARLIER COMMENT, BULLET JUST TO BE QUICK, ONE IS THAT WHILE PUBLIC HEALTH IS MENTIONED IN PAGE, THERE ARE REFERENCES IN PAGE 1 TO CLINICAL MEDICINE THAT COULD BE BROADENED OUT TO MAKE CLEAR THAT THEY RELATE TO PUBLIC HEALTH AS WELL. THERE MAY BE MORE GENERIC TERMINOLOGY, BUT I STILL GET THIS SENSE THAT THERE IS MORE OF A CLINICAL/MEDICAL FOCUS THAN THERE IS A BROADER FOCUS OF HEALTH PROFESSIONS, EDUCATION AND PUBLIC HEALTH. SECONDLY, IT SEEMS TO ME THAT THE ETHICAL, LEGAL, SOCIAL IMPLICATIONS OUGHT TO BE REFERRED TO SPECIFICALLY SOMEWHERE IN THE RESOLUTION. IT'S INTERESTING THAT IN THE INSTITUTION OF MEDICINE'S REPORT THAT I REFERRED TO ON THE TEACHING OF PUBLIC HEALTH, A GOOD DEAL OF THE LANGUAGE IN THE RECOMMENDATION OF THE GENOMIC COMPETENCES THAT ALL PUBLIC HEALTH PROFESSIONALS NEED, RELATED TO THE LC DIMENSION, AND IT ISN'T AUTOMOTIVELY EVIDENCE IN READING THE RESOLUTION, THAT IT IS A COMPONENT OF THE RESOLUTION THAT THIS COMMITTEE OUGHT TO SEE AS ESSENTIAL BECAUSE IT'S SO MUCH AT THE HEART OF WHAT THIS COMMITTEE IS ALL ABOUT. AND THE -- AND THEN IN TERMS OF THE PREAMBLE, AND I GUESS THIS RELATES TO THE QUESTION PUT ON THE TABLE EARLIER. IT WOULD BE HELPFUL, IT SEEMS TO ME, IN GAINING ATTENTION TO THE RESOLUTION IF SOME CONTENT WERE PUT INTO THE PREAMBLE TO SUGGEST SOME OF THE COMPELLING REASONS WHY IT IS URGENT THAT INCREASED ATTENTION BE GIVEN TO THE EDUCATION OF HEALTH PROFESSIONALS IN GENOMICS BECAUSE OF CONCERNS OF WHAT WILL HAPPEN IF THE PACE OF THE DEVELOPMENT OF TECHNOLOGY GOES FAR BEYOND THE COMPETENCE OF PROFESSIONAL MAKE NEW OF THE TECHNOLOGY OR TO INFORM THE PUBLIC ADEQUATELY ABOUT THE IMPLICATIONS OF THE TECHNOLOGY. THANK YOU.
THANK YOU. DR. LEWIS?
MY ONLY COMMENT IS ON YOUR POINTS IN TERMS OF THE RECOMMENDATION ON NUMBER 5. I'M NOT SURE WHO'S GOING TO DECIDE WHAT IS ADEQUATE KNOWLEDGE IN HUMAN GETICS AND GENOMICS BECAUSE THAT MIGHT DEPEND ON WHERE YOU SIT. SO, TO USE SOMETHING THAT'S YOU KNOW, EITHER TO TAKE OUT THE ADEQUATE OR TO DETERMINE HOW IT'S GOING TO BE MEASURED WOULD BE HELPFUL, BECAUSE I THINK THAT HAVING THAT BE LEFT TO INTERPRETATION MAY BE PROBLEMATIC.
DR. McCABE?
I JUST WANT TO FOLLOW UP ON MR. CITRIN'S COMMENTS ABOUT THE LC (PHONETIC) NOT ONLY ARE THEY IMPORTANT, BUT ALSO THEY'RE ENGAGING TO THE STUDENTS. PERHAPS EVEN MORE IMPORTANTLY, HOWEVER, WHILE THE TECHNOLOGIES WILL CHANGE, THE ETHICAL, LEGAL, AND SOCIAL IMPLICATIONS OF THOSE TECHNOLOGIES WILL REMAIN SOMEWHAT CONSTANT, SO THAT I THINK IT'S IMPORTANT TO CAST A LOT OF THE TEACHING IN THOSE, BECAUSE THEY ARE ENGAGING AND THEY ARE IMPORTANT, BUT THEY ALSO WILL BE SOMEWHAT LONGER-TERM ISSUES THAN WHATEVER IS THE TECHNIQUES.
THIS IS A RATHER SPECIFIC POINT, BUT IN RECOMMENDATION NO. 5, ENCOURAGE CREDITING AND LICENSEURE AND CERTIFICATIONS --. [ INAUDIBLE ]
TAKING OUT ADEQUATE FOJ IN HUMAN GENETICS AND GENOMICS, CAN THIS BE SPECIFIED TO REFER TO HEALTHCARE PROFESSIONALS? BECAUSE LABORATORIES THAT DO TESTING ARE ALSO ACCREDITED AND LICENSED, AND I DON'T KNOW IF WE'RE REFERRING TO LABORATORY OR TESTING ACCREDITATION AND LICENSEURE. YOU'RE TALKING ABOUT ACCREDITATION AND LICENSEURE OF HEALTHCARE PROFESSION. LOOKS TO ME TO CONSIDER. I THINK -- FIRST IT HAS DONE TO COLLABORATE. CAN YOU HOLD IT. COLLABORATIVE IMPROVEMENT TO GET CHANGE AND PRACTICES. OVER THIS, IMMORTAL PRACTICES. HOW YOU GET, YOU KNOW, CHANGE IN MEDICAL CURRICULUM. IT'S AN AREA THAT I THINK IS RIGHT. YOU HAVE -- [ INDISCERNIBLE ] AND CAN YOU USE THAT AND DEVELOP IMMORTAL FOR GETTING THAT KIND OF CURRICULUM CHANGE INTO MEDICAL SCHOOL, SCHOOLS OF PUBLIC HEALTH, NURSING SCHOOL, SO I THINK IT'S SOMETHING THAT I WOULD LIKE TO PUT ON THE TABLE THAT IS IS, THE COMMITTEE WAS INTERESTED IN LOOKING AT. THIS IS, YOU CAN COMMENT ON SORT OF WHAT THE HEALTH CENTERS HAVE DONE AND HOW THEY HAVE USED, YOU KNOW, A COLLABORATIVE LEARNING MODEL COUPLED WITH AN IMPRIVATEMENT MODEL TO CHANGE PRACTICE. ON I COME FROM THE AGENCY OF HEALTHCARE AND QUALITY. WE THINK A LOT ABOUT INTEGRATION AND TRYING TO CHANGE PRACTICES. WE STRUGGLE WITH THE ISSUE OF OVERBURDENING NOT ONLY, YOU KNOW, TEACHERS AND PRACTITIONERS. TRYING TO GIVE PEOPLE THE TOUR AND THE SETTING THEY NEED TO SUPPORT AND FORCE THE CHANGE IN THEIR PRACTICES.
I MAINLY WOULD LIKE TO SAY I HAD WRITTEN THAT DOWN EARLIER FROM, AGAIN, THE COLLABORATIVE OR BREAKTHROUGH SERIES-TYPE OF MODEL. MAYBE SOMETHING THAT, AGAIN, VARIOUS DISCIPLINES COULD COME TOGETHER AND MAKE APPLICATIONS TO, THROUGH THE BUREAU OF HEALTH PROFESSIONS TO LOOK AT THIS BECAUSE CHANGES REALLY, A MAJOR PIECE WHAT HAVE WE'RE TALKING ABOUT. NOT ONLY WITHIN THE ACADEMIC INSTITUTIONS, BUT IN THE PRACTICE, UM, AND THE PROVIDERS. SO, AGAIN, I WOULD LIKE TO JUST ENCOURAGE OUR COMMUNITY TO BE THINKING OF SOMETHING NOT INNOVATIVE THAT YOU MIGHT LOOK AT THAT TYPE OF A MODEL FOR COMING IN FOR FUNDING FROM THE VARIOUS FEDERAL AGENCIES TO BUILD OFF OF THAT IDEA. AGAIN, I CAN GIVE PEOPLE INFORMATION ABOUT OUR WEBSITE IF YOU. TO KNOW MORE ABOUT THE BREAKTHROUGH SERIES AND THAT TYPE OF LEARNING MODEL. I DO THINK WE NEED TO LOOK AT THIS WITHIN THE CONTEXT OF SYSTEM CHANGE.
MR. GRAY.
YES. THANK YOU. I AM SITTING IN FOR COMMISSIONER MILLER WHO WANTED ME TO RAISE THIS ONE POINT. I GUESS IT RELATES TO POINT NUMBER 6. JUST THAT IS WE'RE TALKING ABOUT ISSUES RELATING TO DIVERSITY THAT WE KEEP IN MIND, DIVERSITY WITHIN THE DISABILITY COMMUNITY, CULTURAL DIVERSITY SHOULD INCLUDE THAT, THAT SEGMENT OF THE POPULATION AS WELL BECAUSE -- AND WE SHOULD BEAR IN MIND THAT WITHIN THE DISABILITY COMMUNITY, THERE A WIDE RANGE OF INTEREST AND CONCERNS AND DIFFERENCES AMONG PERSONS WITH DISABILITIES AND SO THAT SHOULD BE SOMETHING WE SHOULD FOLKUS ON AS WELL. -- FOCUS ON AS WELL.
THANK YOU -- [ INDISCERNIBLE ]
YES, THIS IS A COMMENT AND A SUGGESTION FOR ONE OF THE RESOLUTIONS IS THAT IN REVIEWING THE PAPERS FROM THE RESPONSES FROM ALL THE PROFESSIONAL ORKZS, I DO BELIEVE THAT -- ORGANIZATIONS, I DO BELIEVE THAT ALMOST EVERY ONE OF THE PROFESSIONAL ORGANIZATIONS MENTIONED NICHE PEG AND WHAT THE CORE COMPETENCIES MEANT FOR THEM AND HOW THAT WAS ONE OF THE PIECES THEY WERE ABLE TO INTEGRATE INTO THE WORK THEY WERE DOING TO INTEGRATE GENETICS INTO PRACTICE AND GENOMICS INTO PRACTICE, AND ONE OF THE COMMENTS THIS WE HAVE RECEIVED FROM DR. JEAN JENKINS WAS TO ACTUALLY RECOGNIZE NEUTRAPEG IN THE WORK THEY HAVE DONE IN PART OF THE RESOLUTION, AND I THINK THAT IT WOULD FIT VERY WELL INTO THE SECOND RECOMMENDATION REGARDING THE PARTNERSHIPS AND THE CAT LOGGING OF INFORMATION AND SHARING INFORMATION TO ACTUALLY MENTION NICHE PEG THERE, BOTH TO HOPEFULLY GET MORE VISIBILITY FOR NICHE PEG AND MAYBE FUTURE MEMBERS, AS WELL AS TO SEE IT AS ONE OF THE MODELS FOR PARTNERSHIPS.
THANK YOU VERY MUCH. I WANT TO THANK ALL THE MEMBERS OF THE ROUNDTABLE. THE MEMBERS OF THE TASK FORCE FOR THEIR WORK ON THIS. AND WE WILL USE THIS FOR THE DELIBERATION. THANK YOU.
THANK YOU VERY MUCH, DR. REEDE. ALL OF ON OUR INVITED GUESTS FOR SHARING WITH US THE WORK OF YOUR ORGANIZATIONS IN ADVANCING THE EDUCATION AND TRAINING OF HEALTH PROFESSIONALS IN GENETICS AND THE INSIDE -- INSIGHT ON HOW TO ENCOURAGE MORE OF THESE EFFORTS. YOUR RESPONSES, ALL OF THE RESPONSES WE HAVE RECEIVED TO OUR INFORMATION REQUEST AND THIS ROUNDTABLE DISCUSSION ARE MENTALLY HELPFUL TO OUR EXPLORATION OF PRIVATE SECTOR EFFORTS IN GENETICS EDUCATION AND TRAINING AND CERTAINLY WILL BE VERY USEFUL TO US AS WE FURTHER DEVELOP OUR RESOLUTION TO THE SECRETARY ON THIS IMPORTANT TOPIC. WITH THAT, WE WILL BE DISCUSSING THE DRAFT RESOLUTION DURING A WORKING LUNCH AND SO TO ALL COMMITTEE MEMBERS AND EX OFFICIO MEMBERS, BOX LUNCHES ARE AVAILABLE TO YOU OUT IN THE HALLWAY. PLEASE TAKE A FEW MINUTE, LITERALLY A FEW MINUTES TO GATHER YOUR LUNCHES. FOR MEMBERS OF THE PUBLIC, LUNK ERROR ERROR IS AVAILABLE IN THE HOTEL RESTAURANT WHICH, IS -- LUNCH IS AVAILABLE IN THE HOTEL RESTAURANT, WHICH IS ON ON THE WAY TO THE LOBBIY AND WE WILL RECONVENE IN ABOUT 10 MINUTES. SO, AT ABOUT 25 AFTER WE WILL BE RECONVENING. BETWEEN 20 AND 25 AFTER. THANK YOU.
EDWARD, THIS IS REED. IS THAT RECONVENING IN THE SAME ROOM?
OKAY, WE'RE GOING TO GET STARTED, WE'RE GOING TO CONSIDER THE DRAFT RESOLUTION ON GENETICS EDUCATION AND TRAINING OF HEALTH PROFESSIONALS. THIS CAN BE FOUND AT TAB 4 OF YOUR BRIEFING BOOK AND IT'S ALSO, ALSO GOING TO PUT IT UP ON THE SCREEN HERE. I DIDN'T CHECK WITH YOU. I'M GOING TO TURN IT OVER TO YOU FOR THIS DISCUSSION OF THE EDUCATION RESOLUTION, OR WE CAN GO DOA TAG TEAM IF YOU WOULD LIKE TO BOTH EAT. WHY DON'T WE DO THAT IN.
WHY DON'T WE TAG WHILE I CHEW.
OKAY. [ LAUGHTER ]
I'LL START OFF AND THEN JOAN WILL TAKE OVER. YOU HAVE THE DRAFT RESOLUTION UP BEFORE YOU AND SOMEBODY COMMENTED THAT IT SOUNDED A BIT STILL THED TO HAVE ALL THE WHEREASS. UNFORTUNATEY THERE -- UNFORTUNATELY, THAT'S THE NATURE OF THE RESOLUTIONS IS TO HAVE ALL OF THOSE WHEREASES. I THINK WE'RE STUCK WITH THOSE. WHEREAS, THE SECRETARY'S ADVISORY COMMITTEEY ON GENETICS HEALTH AND SOCIETY WAS ESTABLISHED TO ADVISE THE SECRETARY OF HEALTH AND HUMAN SERVICES ON THE RANGE OF COMPLEX INSENSITIVE MEDICAL, ETHICAL, LEGAL, AND SOCIAL ISSUES RAISED BY NEW TECHNOLOGIES, NEW TECKNO LOGICAL DEVELOPMENTS IN HUMAN GENETICS AND I KNOW IT'S BEEN BROUGHT UP ABOUT FAMILY HISTORY BEING THE FIRST GENETIC TEST, AND I THINK THAT A COUPLE OF THE EX OFFICIOS WERE LOOKING AT WHERE WE MIGHT FIT THE FAMILY HISTORY INTO THIS. ANY COMMENTS? ELLEN, WERE YOU ONE OF THE ONES WORKING ON THAT IN.
I WASN'T WORKING ON ON A SPECIFIC PLACE TO PUT IT, BUT I WAS -- I THINK THERE WERE A NUMBER OF US THAT THOUGHT IT SHOULD BE PUT SOMEWHERE.
OKAY.
I WILL PAY ATTENTION NOW WHILE WE WORK OVER LUNCH TO WHERE IT SHOULD BE PUT, UNLESS SOMEONE ELSE HAS A GOOD IDEA?
WE CAN CERTAINLY WORK ON INCLUDING IT IN THE RECOMMENDATIONS IF WE DIDN'T WANT TO INSERT IT IN THE WHEREASES.
Reporter: WOULD THINK IT WOULD MAKE MORE SENSE AS A RECOMMENDATION RATHER THAN A WHEREAS.
ANYBODY WANT TO MAKE -- YES, ROBIN, SUE.
I DO HAVE A SPECIFIC RECOMMENDATION, I THINK, IN KEEPING WITH THE VERY GOOD RECOMMENDATION THAT REEDE FIRST CAME UP WITH AND OTHERS SUPPORTED IN LINKING WITH THE SECRETARIS -- SECRETARY'S EFFORTS ON HEALTH INFORMATION TECHNOLOGY AND THE FACT THAT THAT COULD BE ONE PLACE WHERE WE CAN INCLUDE FAMILY INFORMATION. I THINK IN RECOMMENDATION NUMBER 1 WHICH, ALREADY ADDRESSES DEPARTMENTAL POLICIES AND PROGRAMS ABOUT GENETIC INFORMATION THAT THERE WE SPECIFICALLY INCLUDE FAMILY HISTORY AND A RECOMMENDATION THAT THE CAHIG EFFORT IN THE DEPARTMENT ON HEALTH INFORMATION TECHNOLOGY INCLUDE LOOKING AT GENETIC INFORMATION AND FAMILY HISTORY AS PART OF ITS OVERALL RECOMMENDATIONS IN FORMULATING AN ACTION PLAN.
OKAY, JON OAN, ARE YOU READY TO -- JOAN, ARE YOU READY TO TAKE OVER?
SURE. MOVING FORWARD. ANY OTHER COMMENTS ON INCORPORATION OF SOMETHING RELATED TO FAMILY HISTORY AND LOOKING AT IN THE INCLUSION OF INFORMATION TECHNOLOGY, LOOKING AT GENETICS AND FAMILY HISTORY WITHIN RECOMMENDATION 1.
MAYBE THIS WAS SAID EARLIER, BUT I GUESS ANYTIME WE USE THE WORD "GENETIC INFORMATION" CAN PUT/FAMILY HISTORY TO IT. IT'S MORE THAN FAMILY GENETICS, IT'S SHARED ENVIRONMENT, SHARED CULTURE, SHARED BEHAVIOR. THE PHILOSOPHY THAT GENETIC INFORMATION AND FAMILY HISTORY SHOULD NOT BE EXCEPTIONAL AND SO ON AND SO FORTH, SEARCH FOR THE WORD "GENETIC INFORMATION" AND ADD FAMILY HAD HISTORY TO IT.
I GUESS I JUST WONDERED IS THIS IN THE CONTEXT OF THE GENETIC INFORMATION NONDISCRIMINATION ACT, IS THIS COVERED INFORMATION WITHIN THAT OR NOT? I MEAN OBVIOUSLY IF YOU HAVE INFORMATION IN A MEDICAL RECORD RELATING TO PRE-EXISTING CONDITIONS, THAT CAN BE PROBLEMATIC, I IMAGINE, TO A PERSON IN TERM OF HEALTH INSURANCE COVERAGE OR POTENTIALLY EMPLOYMENT. DOES PUTTING FAMILY HISTORY IN THERE HAVE ANY IMPACT ON WHETHER OR NOT THAT'S PROTECTED INFORMATION WITHIN THE CONTEXT OF THE GENETIC INFORMATION NONDISCRIMINATION ACT.
ANY COMMENTS?
THE BILL AS PASSED BY THE SENATE DEFINED GENETIC INFORMATION TO INCLUDE FAMILY HISTORY. IT SPECIFICALLY INCLUDED IN THAT. I THINK IT'S IMPORTANT THAT WE RECOGNIZE THAT FAMILY HISTORY, MEDICAL, IS A PART OF THE GENETIC INFORMATION. I WOULD CERTAINLY MAKE THE POINT.
ANY OTHER COMMENTS? IN REGARD TO THE FAMILY HISTORY AND INFORMATION TECHNOLOGY? IN RECOMMENDATION 1?
ALL RIGHT. I WAS JUST GOING TO ADD THAT BY INCLUDING IT IN THE FIRST RECOMMENDATION AND IN THE CONTEXT OF THE SECRETARY'S HEALTH INFORMATION TECHNOLOGY EFFORT, A CRITICAL PART OF WHAT THAT GROUP IS DOING IS LOOKING AT PRIVACY CONFIDENTIALITY, NONDISCRIMINATION. THE ON OFFICE FOR CIVIL RIGHTS IS AN ACTIVE PARTICIPANT IN THAT AND IS ENSURING THAT TT PRIVACY RULE UNDER HEP -- HIPPA AND NONDISCRIMNITION CONSIDERATIONS ARE PART OF THE FORMULATION, SO I THINK BY PUTTING IT IN THE FIRST RECOMMENDATION, WE WILL HAVE SOME ASSURANCES THAT THOSE CONSIDERATIONS WILL BE PART OF FORMULATING ANY RECOMMENDATIONS.
CAN I JUST MAKE ONE SUGGESTION. THE WAY IT'S WRITTEN NOW, IT SAYS GENETIC INFORMATION,COMMA, INCLUDING FAMILY MEDICAL HISTORY INFORMATION. -- INFORMATION. I WOULD JUST CHANGE THAT TO SAY WHICH INCLUDES FAMILY HISTORY INFORMATION. THE REASON FOR THAT, I WANT TO MAKEURE IT'S CLEAR THAT FAMILY MEDICAL HISTORY IS A PART OF GENETIC INFORMATION, IT'S NOT SOMETHING THAT IS SEPARATE .
MOVING ON. THE NEXT WHEREAS IS ADVANCES IN GENOMICS HAVE THE CHANCE TO IMPROVE HEALTH STATUS AND OUTCOME ON GREATLY. AND APPROPRIATE AND ADEQUATE TRAINING AND EDUCATION IN GENOMICS IS CRUCIAL FOR ALL HEALTH PROFESSIONALS TO ENSURE THE SUCCESSFUL INTEGRATION OF GENOMIC CONCEPTS AND GENETIC TECHNOLOGY AND SERVICES THROUGHOUT THE ENTIRE HEALTHCARE SYSTEM.
MAYBE, MAYBE WE SHOULD ADD TO THAT WHEREAS HEALTH PROFESSIONALS AND THE PUBLIC.
UH-HUH.
BECAUSE WE HAVE BEEN BRIGGING UP OVER AND OVER AGAIN THAT THE PUBLIC -- BRINGING UP OVER AND OVER AGAIN THAT THE PUBLIC IS AN ACTIVE PART OF THIS PROCESS, AND THAT WOULD BE -- THEIR SECTION JUST AS IMPORTANT AS THE HEALTH PROFESSIONALS IN A DIFFERENT WAY.
ANY OTHER COMMENTS?
YEAH.
UH-HUH.
I WOULD ADD, KATE, THAT WE MAKE THAT A SEPARATE WHEREAS. LIKE MAYBE NOT -- I THINK THAT ADEQUATE TRAINING AND EDUCATION IN GENOMIC, OBVIOUSLY, WE'RE NEEDING A DIFFERENT TYPE OF TRAINING AND EDUCATION. I WOULD -- [ INDISCERNIBLE ] THE PUBLIC EDUCATION APPEARS TO BE IN IN THE WHEREAS, I THINK IT SHOULD BE IN THE SEPARATE.
ANY OTHER SPECIFIC COMMENTS IN REGARD TO THE PUBLIC EDUCATION, PLEASE. I THINK THERE WAS A -- ACTUALLY A VERY RICH DISCUSSION AT THE END ABOUT THE NEED FOR THE PUBLIC EDUCATION. IT'S CLEAR IT SHOULD BE INCORPORATED HERE SOMEWHERE IN TERMS OF A SEPARATE WHEREAS ON OR AN INTEGRATION INTO THESE CURRENTS. ANY THOUGHTS IN.
I -- I THINK IT'S IMPORTANT TO INCLUDE SORT OF THE PUBLIC EDUCATION AND CAPTURE THIS CONCEPT OF, AS AN INFORMED CONSUMER THAT WE NEED THEM TO BE EDUCATED SO THAT THEY CAN BE INFORMED, CONSUMERS AND ACTIVE PARTICIPANTS IN THEIR HEALTHCARE.
FOR THE PREVIOUS ONE, TO BE CONSISTENT WITH THE LANGUAGE FROM MURRAY'S COMMENTS AND AND TOBY'S COMMENTS OF SAYING HEALTHCARE AND PUBLIC HEALTH PROFESSIONALS IN YOUR PRIOR WHEREAS, AND LOOK AT THAT THROUGHOUT THE DOCUMENT.
SO FROM THIS AREA HERE AND ANY OTHER AREAS.
PARDON?
IN THIS SECTION BUT IN ANY OTHER AREAS MAKING IT MORE BROAD.
RIGHT. SAYING HEALTHCARE AND PUBLIC HEALTH PROFESSIONALS. I THINK YOU WILL RECOVER -- COVER A BROADER SCOPE OF PRACTICE.
OKAY. THE RECOMMENDATION HERE WAS TO ENGAGE OTHER HEALTH PROFESSIONALS, THE PRIVATE SECTOR AND COLLEAGUES AT THE FEDERAL-STATE LEVELS TO FACILITATE THE CATALOGGING AND GENOME ONICS APPLICATIONS TO CLINICAL MEDICINE AND PUBLIC HEALTH AND MODELS BASED UPON THESE APPLICATIONS TO ENSURE GENOMICS HAS IMPACT NOW AS OPPOSED TO FAR OFF IN THE FUTURE. [ INDISCERNIBLE ]
YES. I WANT TO JUST SAY I THINK BEFORE WE MOVE DOWN TO NUMBER 2 THAT WE SHOULD PROBABLY SPLIT 1 INTO TWO DIFFERENT THINGS BECAUSE 1 IS SORT OF INCLUDING GENETIC STUFF AND DEPARTMENT POLICIES AND THEN THE SECOND PART OF THAT IS TALKING ABOUT EDUCATION. AND THEN I THINK 2 BECOMES 3 THEN IF WE, WE DO THAT. I, YOU KNOW, IT SEEMS LIKE 1 NOW HAS SORT OF 2 DIFFERENT THOUGHTS IN IT .
SO ONE IS RELATING TO DEPARTMENTAL POLICY AND THE OTHER RELATES TO OVERALL EDUCATION AND TRAINING. OKAY.
WHERE WOULD YOU SEE THE POINT ABOUT FAMILY HISTORY. WOULD THAT BE PART OF THE SECOND ONE THEN OR A SECOND ONE ALTOGETHER? IN --
I THINK FAMILY HISTORY, IT NEEDS TO BE INTEGRATED AS PART OF THE TRAINING AND EDUCATION OF HEALTH PROFESSIONALS TO TAKE FAMILY HISTORY AND TO MAKE IT PART OF THE MEDICAL RECORDS, SO. I THINK IT'S APPROPRIATE SORT OF THE WAY YOU'VE SPLIT IT THERE.
OKAY .
LOOK AT RECOMMENDATION NUMBER 2. AND SO 2 SHOULD START WITH INTEGRATE GENONLYICS INTO THE EDUCATION SO IT'S AN ACTIVE, LIKE THE OTHER ONES .
REED, WE'RE NOT ERROR -- HEARING YOU. YOU WILL NEED TO SPEAK UP.
SORRY. THE WHEREAS -- CAN YOU HEAR ME NOW?
YES.
IT -- REED, IT SOUNDS LIKE YOU'RE A LITTLE CLOSE TO THE MIC.
OKAY. HOW ABOUT NOW?
THAT SEEMS A LITTLE BIT BETTER.
OKAY.
YOU'RE BREAKING UP.
I'M BREAKING UP NOW, HUH IN.
AND WE AREN'T TRYING TO IGNORE YOU BY SAYING THAT.
I'LL CALL BACK IN ON A DIFFERENT LINE.
NO, IT'S ABOUT -- THAT'S BETTER.
OKAY. THEN CAN YOU CHANGE THE WHEREAS -- [ INDISCERNIBLE ]
I BEN IN -- I BEG YOUR PARDON?
THE THIRD WHEREAS, THE TRAINING -- [ INDISCERNIBLE ]
RIGHT.
YOU COMPLETED THAT SPECIAL?
NO, I DON'T BELIEVE WE HAVE. WE TALKED ABOUT THE,DITION OF THE PUBLIC AND PUTTING IT IN THIS WHEREAASO OR A SEPARATE WHEREAS THAT REFER TO THE NEED OF THE PUBLIC EDUCATION AND TRAINING. [ INDISCERNIBLE ] [ INDISCERNIBLE ]
NO ONE HAS. SO YOU'RE SPEAKING SPECIFICALLY TO THE WORD "SUCCESSFUL" AND ANOTHER WORD THAT MIGHT BE MORE SUITABLE?
YEAH. I'M NOT SURE WHAT -- [ INDISCERNIBLE ] -- SO I'M THINKING OF APPROPRIATE -- EFFICIENT INTEGRATION.
APPROPRIATE IS WHAT WE HAVE UP THERE NOW.
APPROPRIATE, EFFECTIVE AND EFFICIENT.
OKAY. [ INDISCERNIBLE ]
THANK YOU .
THERE THEIR IS ANY FURTHER DISCUSSION INCORPORATED WITH THE PUBLIC AROUND THIS OR SETTING UP A SEPARATE WHEREAS FOR PUBLIC EDUCATION IN.
I THINK WHEREAS IS VERY EFFECTIVE. I MEAN THE ONLY OTHER THING YOU MAY WANT TO CONSIDER IS TO ADD A PHRASE AT THE END, WE COULD SAY WHEREAS APPROPRIATE INFORMATION IS CRUCIAL FOR THE GENERAL PUBLIC TO REAP THE BENEFITS OF, YOU KNOW, OR TO TAKE ADVANTAGE OF THE POWER OF THIS SO THAT IT CLEARLY SPECIFIES THAT NOT ONLY, YOU, THE PUBLIC SEEMS TO BE ENGAGED TO BE BETTER CONSUMERS, BUT ALSO FOR THEM TO GET THE, YOU KNOW, BENEFITS OF THIS VAST TECHNOLOGY.
OKAY .
THE NEXT WHEREAS IS WHEREAS SUCH INTEGRATION IS A NECESSARY COMPONENT OF ACCESS .
DR. REEDE, CAN I JUST GO BACK TO THE ONE PRIOR TO THE PUBLIC, THE GENERAL PUBLIC.
UH-HUH.
WE -- THE LAST PART OF THAT READ THE ENTIRE HEALTHCARE SYSTEM, AND WE'VE HAD A SUGGESTION THAT IT JUST READ THE ENTIRE HEALTH SYSTEM. THAT THAT MIGHT BROADEN IT A BIT. IS THAT OKAY?
AND THE SECOND WHEREAS, THE THIRD WHEREAS, WE WERE GOING TO ADD PUBLIC HEALTH. AND HEALTH PROFESSIONAL OR WE WERE GOING TO BROADEN THAT TO BE PUBLIC HEALTH AND HEALTH PROFESSIONALS. ISN'T THAT WHAT -- ISN'T THAT WHERE --
THE LANGUAGE WE USED IN A LOT OF OUR DOCUMENTS THROUGH NIHs, TOO, IS HEALTHCARE AND PUBLIC HEALTH PROFESSIONAL.
OKAY.
BRAD.
SO -- I HAVE ANOTHER WHEREAS TO TALK ABOUT. ARE WE READY FOR ANOTHER WHEREAS? MY QUESTION ABOUT WHAT WAS BROKEN IN MR. CITRIN'S, I THINK IS HIS NAME, RESPONSE TO IT. I SEEN, THIS MIGHT SOUND NEGATIVE, BUT IT WOULD STILL UNDERSCORE MAYBE AN URGENCY TO DO SOMETHING. SO SOMETHING ALONG THE LINES OF WHEREAS INSUFFICIENT TRAINING AND EDUCATION CAN LEAD TO EXCESSIVE COSTS INCLUR -- INCURRED ON AN APPROPRIATE TESTS, AS YOU BROUGHT THAT UP. INACCURATE OR ELUSIVE DISEASE DIAGNOSE EASE, WHICH WHAT WE JUST TALKED ABOUT AND IN MANY CASES, MISGUIDED DISEASE MANAGEMENT AND FAMILY PLANNING. THOSE ARE ALL NEGATIVE THINGS THAT CAN COME ABOUT IF THE SECRETARY DOESN'T DO ANYTHING ABOUT THIS.
UH. -- UH-HUH.
IN THIS AREA, ISN'T IT THE BROCKEN THINGS, THE ISSUES THAT CREATED URGENCY. OTHERS THAT YOU WOULD WANT TO ADD TO THAT LIST .
YES, SO WHEN SARAH GETS DONE TYPING THIS LIST IN, I'M GOING TO COMMENT I DON'T THINK THE EXCESSIVE COSTS SHOULD BE THE FIRST THING. I THINK THE FIRST THING SHOULD BE THE PATIENT MANAGEMENT ISSUE. OBVIOUSLY COSTS ARE IMPORTANT, BUT I THINK THE KEY THING IS, YOU KNOW, THAT PATIENTS ARE NOT BEING MANAGED AS THEY SHOULD BE FOR THEIR MEDICAL CONDITION.
ANOTHER CONCEPT OF THAT LACK OF EDUCATION IS ACCESS IN ADDITION TO THE PATIENT MANAGEMENT .
WE'LL PROBABLY HAVE TO REORDER THEM, WON'T WE IN WHEN IT SAYS SUCH INTEGRATION, IT REFERS TO THE TWO OTHER WHEREASES ABOVE THE --
I THINK EDUCATION -- [ INDISCERNIBLE ] --
BUT YOU SAID EDUCATION IS A NECESSARY COMPONENT OF ACCESS. I WONDERED IF YOU WANTED TO SAY SOMETHING MORE SPECIFIC ABOUT GENETICS.
ON THE WHEREAS, WHERE IT SAYS SUCH INTEGRATION IS A NECESSARY COMPONENT OF ACCESS, WHICH SHOULD REFER TO THE THIRD ONE, I THINK ACTUALLY ACCESS IS AFFECTED BY EDUCATION OF NOT ONLY THE HEALTHCARE PROFESSIONAL, BUT THE PUBLIC AND SO MAYBE WE COULD JUST SAY WHERE EDUCATION IS A NECESSARY COMPONENT OF ACCESS RATHER THAN INTEGRATION.
OR POSSIBLY MENTION BOTH THE PUBLIC AND THE HEALTH PROFESSIONALS SO THE PUBLIC HEALTH MENTIONS SPECIFICALLY THE EDUCATION OF THIS BODY IS ANINT WRECKAL COMPONENT -- AN INTRICAL COMPONENT.
TELL ME WHAT TO DO. I WAS SO ENGROSSED IN BRAD.
UNDER THE NEXT WHEREAS, INSTEAD OF SUCH INTEGRATION SAY EDUCATION OF HEALTHCARE AND PUBLIC HEALTH PROFESSIONALS AND OF THE PUBLIC IS A NECESSARY COMPONENT OF ACCESS. DOES THAT SOUND -- .
UH-HUH .
.
OKAY .
I'M SORRY. EITHER ONE.
OKAY. THE -- ONE, TWO, THREE, FOUR -- THE FOURTH WHEREAS, BRAD'S WHEREAS, I THINK ONE OF THE POINTS THAT MR. CITRINE MADE THAT WASN'T REFLECTED IN THIS WHEREAS, YOU NAMED COSTS, SORT OF THE MEDIA DISTORTION AND THE RULE OF EXPANDING TECHNOLOGY TO, THAT CAN EITHER REDUCE DISPARITIES OR EXACERBATE. I'M NOT SURE THAT WHEREAS, THAT THIRD POINT WAS CAPTURED IN THAT WHEREAS.
YOU WANT TO OFFER SOME WORDING?
WHEREAS -- [ INDISCERNIBLE ] -- EXACERBATE DISPARITIES, HELD DISPARITIES IS ONE. NO, NO, SEPARATE. I'M NOT ASKING IT TO BE A SEPARATE WHEREAS.
IT'S JUST ANOTHER ITEM TO BE MENTIONED AMONG THE --
THE URGENT NEED FOR THIS.
IT SORT OF BELONGS MAYBE IN THE NEXT WHEREAS WITH THE ACCESS TO.
WHEREAS EDUCATION AND --
ISN'T THERE A PLACE WHERE WE TALK ABOUT NEW TECHNOLOGIES?
NO, ACTUALLY, I THINK THE ISSUE AROUND EXACERBATION OF HEALTH DISPARITIES BELONGS UP WITH THE OTHER URGENT --
YES.
-- AREAS.
SORT OF WHY WE TALK ABOUT THE IMPENDING CRASHES.
WHEREAS EDUCATION AND TRAINING IS CONDEUCIVE. [ INDISCERNIBLE ]
RIGHT, SO WHERE AS INSUFFICIENT TRAINING CAN LEAD TO INACCURATE OR DISEASE DIAGNOSIS MISGUIDED MANAGEMENT.
DO YOU WANT IT BEFORE COST OR AFTER?
BEFORE COSTS.
LAST. OKAY . [ INDISCERNIBLE ] [ INDISCERNIBLE ] [ INDISCERNIBLE ]
ARE YOU SAYING I SHOULD REPLACE THE WHEREAS INSUFFICIENT EDUCATION?
YEAH. [ INDISCERNIBLE ]
USE THE WORD "EVIDENCE BASED." THAT'S ALL. IF WE CAN FIND A PLACE FOR IT, THAT WILL BE NICE.
WELL, AND I GUESS POSITIVES ARE ALWAYS BETTER THAN NEGATIVES, BUT I THINK BRAD WAS SORT OF -- WELL, IT'S IN RESPONSE TO YOUR OWN CONCERN THAT WE NEED TO CALL ATTENTION TO A PROBLEM, I GUESS .
WHAT ABOUT IF WE JUST ADD THE EVIDENCE-BASED MEDICINE THING IN THE ONE THAT YOU WERE WORKING ON ON THAT ENDS IN OF ACCESS, YOU KNOW, EVIDENCE-BASED MEDICINE, YOU KNOW, IMPROVED PREVENTION IN PUBLIC HEALTH, YOU KNOW, WHATEVER, BUZZ WORDS WE WANT TO PUT IN THERE.
OR WE CAN PUT IT IN THE HIGHER UP WITH THE WHEREAS ADVANCES IN GENONLYICS HAD HAVE THE POTENTIAL TO MOVE US TO A PREVENTIVE MODEL OF HEALTH AND EVIDENCE-BASED PRACTICE TO GREATLY IMPROVE THE HEALTH STATUS BECAUSE THAT'S GOING TO BE THE MECHANISM BY WHICH WE'RE GOING TO IMPROVE THE HEALTH STATUS AND OUTCOMES.
IF YOU'RE TALKING ABOUT EVIDENCE-BASED MEDICINE, ISN'T THAT ENTIRELY A THIRD NEW TOPIC THAT MIGHT CONFUSE THINGS? WE'RE TALKING ABOUT GENOMICS, GENETICS AND THEN EVIDENCE-BASED MEDICINE . GEE I WOULD THINK THAT THE UMPLYICATION THERE WOULD BE THAT THE, NOW THAT WE UNDERSTAND MORE THE BIOLOGY OF THE DISEASE OR CONDITIONS THAT THAT'S GOING TO BE THE EVIDENCE-BASED, SO I THINK IT GOES HAND-IN-HAND WITH THE GENETICS AND GENOMICS.
BUT THAT'S SUCH A BIG TOP UCK BY ITSELF THE ONLY CONCERN. -- TOPIC BY ITSELF, THAT'S THE ONLY CONCERN.
I THINK IT'S WRITTEN WHERE IT'S THE APPLICATION OF EVIDENCE BASED-MEDICINE. I HAVE NO PROBLEM WITH IT BEING PRINTED THAT WAY. DO OTHERS WANT TO WEIGH IN? YES.
WHAT ABOUT WHAT AGNES WAS SUGGESTING. WERE YOU SAYING THAT WE SHOULD MODIFY THE SECOND WHEREAS IN SOME WAY OR DOES THIS TAKE CARE ERROR ERROR IN.
THAT'S WHAT I WAS SUGGESTING FOR THE SECOND ONE BECAUSE I THINK THAT THE ISSUE OF THE PREVENTIVE MODEL THAT WAS SUGGESTED AS WELL AS EVIDENCE-BASED IS, IS IS THE ACTUAL CAUSE OR THE THING THAT PRECREEDS THE HEALTH STATUS AND OUTCOMES. MUCH MORE SO THAN RELATED TO ACCESS.
WHAT WOULD YOU SUGGEST THEN.
JUST THE WHEREAS EVIDENCE, WHEREAS ADVANCES IN GENOMICS HAVE THE POTENTIAL TO PROVIDE EVIDENCE-BASED PRACTICE AND GREATLY IMPROVE HEALTH STATUS AND OUTCOMES .
ANY OTHER COMMENTS ON THE WHEREASES SO FAR?
DO WE WANT TO SAY EVIDENCE-BASED PRACTICE OF MEDICINE JUST OR SOMETHING INSTEAD OF EVIDENCE-BASED PRACTICE, PRACTICE OF WHAT? JOOLD SOMEONE, WOULD SOMEONE -- [ INDISCERNIBLE ]
REED, WE CAN'T HEAR YOU.
CAN YOU HEAR ME?
YES.
OKAY, I -- [ INDISCERNIBLE ] THE LANGUAGE OF THAT EVIDENCE-BASED PRACTICE. HOW DOES THAT SOUND?
HOW DOES IT READ NOW. I'LL READ IT FOR YOU. WHEREAS ADVANCES IN GENOMICS HAVE THE POTENTIAL TO FACILITATE EVIDENCE-BASED PRACTICE OF MEDICINE AND GREATLY IMPROVE HEALTH STATUS AND OUTCOME.
I -- I THINK THE DIFFICULTY HERE IS ENDING THE WORD EVIDENCE-BASED PRACTICES. THE GENETIC DOESN'T FACILITATE EVIDENT-BASED PRACTICE. IT'S WHAT IS THE EVIDENCE OR THE BEST KNOWLEDGE OF, OF WHATEVER PARTICULAR PRACTICE, DISCIPLINE. SO ADVANCED OF THE GENETICS, UM, THAT IS THE EVIDENCE AND SO THE QUESTION IS, THE CHALLENGE IS HOW TO TRANSLATE THE BEST TIMES INTO THE GUIDELINES AND THE ACTUAL PRACTICE OF HEALTHCARE BASED ON THAT SCIENCE .
Reporter: AGREE WITH REE --
I AGREE WITH REED, WHAT HE JUST SAID.
REED, WOULD YOU LIKE TO MAKE A SUGGESTION HOW WE SHOULD REPHRASE IT?
I THINK, IF I UNDERSTAND, THEY'RE WHAT -- [ INDISCERNIBLE ] -- SUGGESTING, IT'S ADVANCED IN GENETICS WILL LEAD TO -- ADVANCEMENTS IN GENETICS WILL LEAD TO PRECISE UNDERSTANDING OF DISEASE PROCESSES AND PROVIDE BETTER GUIDANCE AROUND ONE INTERVENTIONS GENETIC TECHNOLOGY ARE MOST EFFECTIVE AND MOST APPROPRIATE .
REED, I WILL -- WE HAVE MODIFIED IT ALONG THESE LINES THAT YOU SUGGESTED. JUST MAKE SURE IT'S WHAT YOU SUGGESTED. WHEREAS ADVANCES IN GENOMICS WILL LEAD TO MORE PRECISE UNDERSTANDING OF DISEASE PROCESSES AND WILL PROVIDE BETTER GUIDANCE ON THE APPLICATION OF THERAPUTIC AND PREVENTIVE STRATEGY. I GUESS I ENLARGED YOU AFTER THAT.
THAT'S MUCH BETTER THAN WHAT I SAID.
OKAY.
BUT THEN CAN IT -- CAN IT JUST READ TO GREATLY IMPROVE HEALTH STATUS AND OUTCOMES?
YES.
I MEAN --
SO TAKE OUT HAVE THE POTENTIAL TO FACILITATE. RIGHT . WE HAD INCORPORATED EVIDENCE-BASED PRACTICE IN ANOTHER SECTION. DO YOU WANT TO READ THAT ONE AGAIN ALSO?
OKAY.
BEFORE WE READ THAT ONE, JUST THE EDITOR AND ME SEES A SPLIT IN FINNATIVE. CAN WE TAKE THE GREATLY OUT, PLEASE?
OKAY, THE SECOND RESERVE READS WHEREAS EDUCATION OF HEALTHCARE AND PUBLIC HEALTH PROFESSIONALS AND THE PUBLIC IS -- [ INDISCERNIBLE ] THE COMPONENT OF ACCESS AND THE APPLICATION OF EVIDENCE -- EVIDENCE-BASED MEDICINE.
REED, COULD YOU MUTE THE PHONE IN BETWEEN, PLEASE. WE'RE GETTING FEEDBACK AND ECHO.
OKAY .
THESE TWO -- THAT'S LIKE TWO CONCEPTS IN ONE WHEREAS. I DON'T SEE WHERE ACCESS HAS TO DO WITH THE APPLICATION OF EVIDENCE-BASED MEDICINE. SO IF THOSE ARE TWO DIFFERENT CONCEPTS AND THEY NEED TO EITHER BE SPLIT OR --
DR. CORY. -- KHOURY.
WHY DON'T YOU SPLIT THEM. HAVE TWO WHEREASES .
IS THERE AGREEMENT ON THIS?
OKAY. THE NEXT WHEREAS READS AS WORDS TO A SURVEY FEDERAL AGENCY ON THEIR ROLE IN ACTIVITY GENETICS EDUCATION TRAINING AND HELP WORKFORCE ANALYSIS, FOUND THAT FEDERAL EFFORTS WERE FOCUSED ON ENHANCING ACCESS BE FACILITATING THE TRANSLATION AND APPROPRIATE INTEGRATION OF NEW GENETIC TECHNOLOGIES INTO HEALTHCARE AND PUBLIC HEALTH .
THAT'S ON THE FEDERAL -- ALL THE FEDERAL SURVEY FOUND WAS RELATED ONLY TO ENHANCING ACCESS OR EVERYTHING ELSE BECAUSE IT SEEMS TO ME THAT THERE WAS MORE THAN MAYBE I MISSED THAT IN THE LAST MEETING YOU GOT, DISCUSSED THIS, BUT IT SEEM LIKE THE FOCUS OF THE FEDERAL EFFORTS NOT ONLY ON ENHANCES -- ENHANCING ACCESS BUT A WHOLE BUNCH OF OTHER THINGS AS WELL.
WELL, I THINK THIS WAS PROBABLY A DISTILLATION INSTEAD OF BLAMING IT ALL DOWN. IF IN DOING THIS WE HAVEY NEGLECTED THEM TO HIGHLIGHT SOMETHING IMPORTANT, WE CAN JUST ADD IT THERE, I THINK, IF THE COMMISSION AGREES.
WELL, I MEAN THE WHOLE CONCEPT OF TRANSLATION AND APPROPRIATE INTEGRATION INCLUDES ACCESS. IF YOU JUST SAY THE FEDERAL EFFORTS ARE FOCUSED ON TRANSLATION AND APPROPRIATE INTEGRATION BECAUSE THEY, WITHOUT JUST HIGHLIGHTING ENHANCING ACCESS, IT SEEMS TO ME THAT IT'S STILL FOCUSED. JUST TAKE AWAY ENHANCED ACCESS .
THAT'S IT .
DO THE OTHER FEDERAL AGENCIES AGREE WITH US IN ANYONE WHO DISAGREES?
WELL, THE ACCESS AGENCY ISN'T IN THE ROOM AT THE MOMENT. SO WE MIGHT WANT --
QUICK QUESTION. WOULD YOU WANT TO CHAUMPLG THAT TO GENOMIC OR LEAVE IT AS GENETICS? BOTH THE FIRST AND LASTY SENTENCES.
GENETICS AND GENOMICS .
SORRY, I WOULD MAKE IT GENNIETICS AND GENOMICS, I THINK .
I WOULD SUGGEST WHEN HERSA RETURNS, WE WOULD REVISIT THIS.
OKAY.
THE NEXT WHEREAS IS A SOLICITATION OF INFORMATION FROM EDUCATIONAL AND PROFESSIONAL ORGANIZATIONS IDENTIFIED THE FOLLOWING NEEDS IN GENETICS/GENOMICS EDUCATION AND TRAINING AND THOSE NEEDS WERE SATISFY IDENTIFIED AS INVENTORIED WIDELY RELEVANT CLINICAL APPLICATIONS STEMMING FROM ADVANCES IN GENOMICS, EDUCATIONAL MODELS THAT USE SUCH APPLICATIONS TO CLARIFY HOW GENNENT -- GENETICS/GENEMICS SHOULD BE INTEGRATED INTO PRACTICE, BROADENING THE FOCUS FROM EDUCATION IN TRAINING FROM GENETICS TO GENOMICS, APPROPRIATELY-TRAINED FACULTY AND TRAINING PROGRAMS THAT ADDRESS THE INFER -- INTERFACE OF AND INTERACTION BETWEEN GENOMICS AND PUBLIC POLICY.
I WOULD SUGGEST TO REVISIT FAMILY HISTORY HERE UNDER ITS OWN BULLET FOR ONE OF THE BULLETS. IT COULD BE ITS OWN BULLET.
WELL, I THINK WE WOULD HAVE TO MAKE SURE THE INFORMATION THAT CAME BACK FROM THESE ORGANIZATIONS, THAT'S WHAT THIS BULLET IS ABOUT. AMANDA OR JOAN, WAS THE FAMILY HISTORY HIGHLIGHTED IN THE -- .
NO.
THE RESPONSE.
IT WAS NOT MENTIONED THERE. ONE OF MY QUESTION WOULD BE: THIS IS THE SOLICITATION OF INFORMATION. IF YOU CONSIDER IT A SOLICITATION THAT INCLUDED THE SURVEY AND THE ROUND TABLE.
YEAH.
IN THAT CASE, IT COULD BE INCLUDED.
YEAH. AND THE TWO CHANGES THAT ARE HERE ARE REFLECTIVE OF COMMENTS MADE BY THE ROUND TABLE, TOO. SO HOW WOULD YOU LIKE TO ADD IT? AND WHERE.
COULD BE UNDER THE THIRD BULLET, A BROADENING OF THE FOCUS OF EDUCATION AND TRAINING FROM GENETICS TO GENOMIC, INCLUDING --
CL INCLUDES THE POINTS --
WHICH INCLUDES FAMILY HISTORY TOOLS .
ONE OF THE OTHER AREAS THAT WAS MENTIONED, I THINK, BY DR. WHITCOM, HE TALKED ABOUT THE NEED TO ACCESS PATIENTS. THIS NOT REFLECTED HERE. DO WE WANT TO REFLECT THAT IN.
I DON'T KNOW IF IT'S ACCURATE TO SAY, BUT THIS GETS TO THE POINT ABOUT HOW SIGNIFICANT IS THE PROBLEM. IS IT ACCURATE TO PUT IN THE BEGINNING PART BEFORE THE BULLETS THAT THESE ARE URGENT NEEDS IN USE THAT MODIFIER? I DON'T KNOW IF EVERYONE WOULD AGREE THAT EVERY ONE OF THOSE IS URGENT, BUT THAT WOULD SORT OF ADD SOME UMPH TO THE RESOLUTION, IF YOU THINK THAT IS ACCURATE .
CAN I MAKE A SUGGESTION THAT IS IN THE BULLET. THE FAMILY HISTORY TOOL REALLY IS MORE A PART OF THE SECOND BULLET, WHICH IS INTEGRATING GENETICS AND GENOMICS INTO PRACTICE THE WAY THAT YOU'RE GOING TO DO THAT IN GENERAL PRACTICE IS BY USE OF FAMILY HISTORY TOOLS. MORE THAN A BROADENING OF THE FOCUS OF EDUCATION AND TRAUNING FROM GENETICS TO GENOMICS. -- TRAINING FROM GENETICS TO GENOMICS.
MAYBE IN THIS CASE IT COULD READ INCLUDING RATHER THAN WHICH INCLUDES OR THROUGH THE USE OF FAMILY -- WELL, YEAH. YOU COULD SAY INCLUDING OR THROUGH THE USE OF. I DON'T KNOW.
ONE OF THE AREAS THAT WAS MENTIONED IN THE COMMENTS RELATED TO THE USE OF THE INTERNET TECHNOLOGY AND THOSE TYPE OF THING AND I'M WONDERING IF THERE IS NOT A WAY TO INTEGRATE SOME OF THAT ALONG WITH THE INFORMATION TECHNOLOGY THAT WE'RE TALKING ABOUT HERE. THE IMPORTANCE OF THIS IS SORT OF THE FUTURE AREA.
IT COULD BE THROUGH THE USE OF FAMILY HISTORY TOOLS INFORMATION TECHNOLOGIES AND -- AND WEB-BASED PRACTICE TOOLS OR THING LIKE THAT. THAT'S BASICALLY WHAT -- WHAT WE WERE TALKING ABOUT AS A WAY TO GET IT INTO THE HANDS OF PRACTICING PHYSICIANS, WHICH I THINK IS WHAT THIS SECOND BULLET IS REALLY GETTING AT.
I THINK IT'S FINE. THE MORE WE CAN LINK THEIR CONCEPTS ACROSS AND SO SINCE INFORMATION TECHNOLOGY CALM OUT SO MUCH TODAY AND IT WAS MENTIONED IN ANOTHER WAY, BUT IT WAS MENTIONED IN THE RESPONSES TO IT INCORPORATED HERE WOULD BE USEFUL. AGNES.
UNDER THESE BULLETED ITEMS, UM, DURING THE ROUNDTABLES, IT WAS MENTIONED SEVERAL TIMES ABOUT THE IMPORTANCE OF THE CERTIFICATION, YOU KNOW, LICENSING REQUIREMENTS, THINGS LIKE THAT. SOMEONE HAD MENTIONED THAT IT SHOULD BE INCLUDED IN THE WHEREAS AS TO WHY EDUCATION SHOULD BE MANDATED. SINCE THE CERTIFICATION QUESTION WAS ONE THAT WE HAD WITH ALL THE SURVEYED PARTICIPANTS AS WELL AS IN THE ROUNDTABLE, IF THE GROUP THINKS THAT A SEPARATE BULLET ITEM ABOUT THE IMPORTANCE OF MANDATING --
I THINK THE POINT WAS MADE THAT UNLESS YOU MANDATE IT IN THE CERTIFICATION OR LICENSURE, ON OR WHATEVER BY THOSE BODY, IT'S NOT GOING TO CHANGE IN THE CURRICULUM.
I'M WONDERING IF SINCE SO MUCH OF THAT IS COMING, OCCURRING AT THE STATE LEVEL OR THROUGH PRIVATE ON ORGANIZATIONS AND NOT REALLY THE GOVERNMENT LEVEL FOR PART OF THE CERTIFICATION LICENSING, THE LICENSING AT THE STATE LEVEL. I'M WONDERING IF --
BUT ACCREDITATION IS MORE ON A NATIONAL LEVEL. SO THEIR AGRED -- ACCREDITATION BODIES, THE LICENSE IS STATE BY STATE.
I'M WONDERING IF BEING SPECIFIC BY THAT, UNSTEAD OF THE LICENSING CREDENTIALING ACCREDITATION TOGETHER. IT'S DIFFICULT TO MANDATE THAT FROM A LEVEL THAT DOES NOT REALLY CONTROL THAT AREA. SO, YOU SEE SPECIFICALLY TO THE ACCREDITATION HERE. A BULLET SPECIFIC TO ACCREDITATION.
I FOUND IT FRUSTRATING TO KNOW THAT FOR PHYSICIANS, I MEAN, SO THAT THERE IS NOTHING THAT CAN BE DONE NATIONALLY. THAT'S PRETTY PATHETIC. FRANKLY. [ LAUGHTER ]
WELL, I THINK WHAT CAN BE DONE NATIONALLY IS TO WORK WITH OUR BOARDS, OUR PROFESSIONAL BOARDS AND THOSE WERE THE ORGANIZATIONS THAT SUBSTANDARDS NATIONALLY.
THAT'S MORE ACCREDITATION RATHER THAN LICENSURE. MAYBE IF WE WANTED TO PUT SOMETHING IN ABOUT NATIONAL ACCREDITATION STANDARDS THAT, UM, -- ON OR THE NEED FOR NATIONAL ACCREDITATION STANDARDS TO DRIVE THE INCORPORATION OF GENETICS INTO THE CURRICULA OF EDUCATIONAL BODIES OR WHATEVER. I DON'T KNOW.
MAKE SURE WE PUT CREDITING AND REACCREDITING. BECAUSE IN FACT IT'S THE RE-ACCREDITING THAT IS ACQUIRED THESE DAYS THAT IS EVEN MORE POWERFUL IN KEEPING, KEEPING THE STANDARDS UP.
THE RE-ACCREDITING ALSO ADDRESSES PARTS OF THE ISSUES YOU RAISED ABOUT WHAT DO YOU DO ABOUT PHYSICIANS AND HELP PRO -- HEALTH PROVIDES ALREADY IN PRACTICE. -- PROVIDERS ALREADY IN PRACTICE.
SORRY, I DIDN'T GET THAT. THIS GOING TO BE --
SARAH, IT WOULD BE NEED FOR NATIONAL, NEED FOR --
I'LL JUST SAY NEED AT THE END BUT --
WELL -- .
WE HAVE NATIONAL. REMEMBER,S THIS THE URGENT NEEDS OF THE, OF THE --
OKAY ACCREDITED, NATIONAL ACCREDITATION STANDARDS. [ INDISCERNIBLE ]
ACCREDITATION AND RE-ACCREDITATION STANDEDDARDS. SORRY. STANDARD.
ACCREDITATION IS A FACILITY TERM. I THINK YOU'RE MEANING CERTIFICATION.
THAT'S RIGHT. CERTIFICATION AND RECERTIFICATION.
OKAY.
SO ARE WE CHANGING THIS OR --
YEAH, CERTIFICATION AND RECERTIFICATION .
STANDARDS FOR, FOR IN GENETIC OR FOR GENETIC EDUCATION OR GENETIC AND GENOMIC EDUCATION. TO DRIVE.
OR IS IT EDUCATION OR PROFICIENCIES OR COMPETENCIES? GENETIC AND GENOMIC COMPETENCIES TO DRIVE, TO DRIVING, ON OR TO DRIVE AND INCORPORATE. I DON'T KNOW WHAT YOU WANT TO CALL DRIVE.
INFLUENCE?
INFLUENCE THE INCORPORATION OF GENNIETICS AND GENOMICS IN EDUCATIONAL CURRICULA.
I HAVE A QUESTION. SHOULD -- IS THIS BETTER UNDER A WHEREAS OR SHOULD THIS BE ONE OF THE RECOMMENDING AS THAT SHOULD BE PUT FORTH IN.
WELL, THIS IS SOMETHING THAT THEY IDENTIFIED, AT LEAST IN THE DISCUSSION HERE. AT LEAST ONE PERSON SAID THAT WHEN THERE ARE MANDATES TO PROVIDE CERTAIN TYPE OF EDUCATION, THAT'S WHAT DRIVES THE CURRICULUM CHANGES. SO THAT WAS -- WE MAY WANT TO SORT OF TAKE THAT AS SOMETHING THAT WE COULD RESOLVE TO DO. ALSO, BUT THAT WAS SOMETHING THAT THEY WERE SAYING IS A NEED IF YOU'RE GOING TO CHANGE THE CURRICULA FROM MANY HEALTH PROFESSIONALS ORGANIZATIONS OR HEALTH PROFESSIONALS THEN IT HELPS TO HAVE ACCREDITATION STANDARDS THAT INCLUDE GENETICS. [ INDISCERNIBLE ]
Reporter: THINK THE OTHER POINT WAS, YOU KNOW, WE'RE NOT WORKING -- LOOKING FOR PEOPLE TO BECOME CERTIFIED IN GENNIETICS. WE'RE LOOKING FOR THEM TO HAVE STANDARDS FOR GENETIC AND GENOMIC COMPETENCIES IN ORDER TO INFLUENCE THE INCORPORATION OF GENETICS INTO GENOMICS IN EDUCATIONAL CRITERIA ACROSS DISEASE AREASO OR ACROSS PRACTICE AREA, YOU KNOW, SORT OF THAT CONCEPT THAT WE'RE NOT JUST LOOKING FOR SOME SPECIALTY IN GENETICS BUT THAT THIS IS, YOU KNOW, CROSS DISSOLVE -- CROSSES ALL MEDICAL DISCIPLINE.
SO CROSS.
YEAH.
COULD YOU SAY GENETICS AND GENOMICS IN GENERAL HEALTHCARE EDUCATION CURRICULA OR SOMETHING.
YEAH, SO THAT WE'RE CLEAR THAT --
YOU'RE NOT CREATING SPECIALIST.
YEAH.
YOU'RE CREATING --
WE'RE CREATING COMP TNSS.
COMPETENCIES TO GENERAL.
RIGHT. COMPETENT SUBSPECIALISTS .
ANY OTHER WHEREAS IN ROBINSON?
YES. I HAVE ANOTHER SUGGESTION FOR AN EDITION. I THINK ANOTHER CENTRAL THEME THAT CAME OUT OF THE SURVEY OF ORGANIZATIONS AND THAT WE HEARD THIS MORNING AND WHICH IS ALSO REFLECTED IN THE RECOMMENDATIONS IS THE CULTURAL DIVERSITY WITHIN AND THE CULTURAL COMPETENCY OF HEALTH PROFESSIONAL, HEALTH PROFESSIONALS IN GENETICS OR GENOMICS. AND SO I WOULD SUGGEST ADDING THAT AS A BULLET.
BUT IS THAT -- THAT'S SOMETHING THAT GENETICS HEALTH PROFESSIONALS DO, OR DO YOU HEAR THAT BEING STATED AS SOMETHING TO BE DONE IN GENERAL FOR ALL HEALTHCARE PROVIDERS AND I THINK IT WAS BY ALL, YOU KNOW, IT WASN'T JUST FOR A SPECIFIC OF GENETICS. IT WAS ACROSS THE BOARD IN TERMS OF THEM.
WOULD THAT BE INCORPORATED INTO THE APPROPRIATELY TRAINED FACULTY OR THAT WOULD APPLY TO THE PRACTITIONERS AS WELL IN.
ALL PRACTITIONERS .
SARAH WAS WORKING ON ON THAT. LET ME DO A LITTLE BIT OF HEALTH KEEPING. THAT IS WE'RE RUNNING OVER THE ALLO -- ALLOTT, D TIME FOR THIS. I THINK IT'S APPROPRIATE WE DO THAT. THE COVERAGE AND REIMBURSEMENT WE'RE PROBABLY NOT GOING TO COMPLETE DISCUSSION OF THIS AFTERNOON, AND THAT WILL CONTINUE, I AM SURE ON, INTO THE NEXT MEETING. SO, I'M GOING TO TAKE THE CHAIR'S PREROGATIVE TO EXTEND THIS SESSION. REED, ARE YOU ABLE TO BE WITH US FOR AWHILE? [ INDISCERNIBLE ]
SOUNDING LIKE YOU'RE COMING FROM OUTER SPACE SOMEWHERE, REED.
I -- [ INDISCERNIBLE ]
WE REALLY CAN'T HEAR YOU. SOMEBODY -- [ INDISCERNIBLE ] [ LAUGHTER ]
CAN'T HEAR ME . CAN YOU -- [ INDISCERNIBLE ]
NOT REALLY.
YOU -- [ INDISCERNIBLE ]
IS THERE ANY CHANCE CAN YOU GET TO A LAND LINE, REED IN.
YEAH. I'LL -- [ INDISCERNIBLE ]
THE ANSWER IS BE WITH YOU.
YOU SOUND REALLY COOL, BUT WE CAN'T UNDERSTAND A WORD OF IT. [ INDISCERNIBLE ]
FALL BACK ON THE LAND LINE.
THANK YOU.
SINCE HERA -- HERSA IS BACK IN THE ROOM, THERE IS ONE OF THE WHEREASES THAT WE CHANGED THE WORDING AND REMOVED ENHANCING ACCESS AND WE WANTED YOU TO WEIGH IN ON THAT AND READ IT AND GIVE ANY COMMENTS .
I WAS HERE FOR THAT PART OF THE DISCUSSION AND I THINK THAT CLARIFIES IT.
OKAY . [PAUSING TO CHANGE CAPTIONERS]
I THINK IN THIS CASE WHAT WE'RE TALKING ABOUT IS THAT GENETICS IS EXCEPTIONAL, BUT THE NEW THING WE HAVE TO DO INTO MEDICAL PRACTICE TODAY. IT'S JUST THE LATEST THING WHICH WE NEED TO DEAL WITH.
I THINK ALSO YOU'RE TALKING ABOUT GENETICS AS A SUBSPECIALTY AND MOVING IT FROM SUBSPECIALTY PRACTICE TO EVERY HEALTH CARE PROFESSIONAL. I THINK IT'S MORE THAT IT'S NOT A SUBSPECIALTY SO WE MAY NOT EVEN WANT TO SAY USE THE WORD EXCEPTIONALISM AND TALK ABOUT IT AS SPECIALIZED AS OPPOSED TO GENERAL PRACTICE. GENETICS IS GOING TO INFLUENCE ALL OF MEDICAL PRACTICE, SO IT'S GOT TO BE PART OF EVERY HEALTH CARE PROFESSIONAL'S TRAINING.
SO INSTEAD, IT SHOULD NOT BE TREATED AS EXCEPTIONAL, IT SHOULD NOT BE TREATED AS A SUBSPECIALTY OR AS A SPECIALTY.
WHAT IF YOU JUST SAID, SHOULD BE TREATED AS PART OF THE SPECTRUM OF ALL HEALTH INFORMATION?
YEAH, THAT'S FINE. JUST TAKE THE NOT AND THE EXCEPTIONAL OUT.
YEAH.
SARA, IN THE PREAMBLE PARAGRAPH ON THE LAST SENTENCE, CAN YOU CHANGE ALL HEALTH PROFESSIONALS TO ALL HEALTH CARE AND PUBLIC HEALTH PROFESSIONALS?
READING IT BACK AGAIN?
OKAY. AND THE SECOND ONE ISN'T REALLY INTEGRATED YET COMPLETELY, BUT IT'S THE PRIOR -- THIS PART WAS PART OF THE PRIOR ONE, PROMOTE THE INTEGRATION OF GENOMICS INTO THE EDUCATION AND TRAINING OF ALL HEALTH PROFESSIONALS AND -- THIS IS A FRAGMENT, I THINK FROM THE FIRST ONE. IT SHOULD BE TREATED AND VIEWED, ACTUALLY, I THINK IT BELONGS UP THERE. AND SO THE SECOND ONE IS PROMOTE THE INTEGRATION OF GENOMICS INTO THE EDUCATION AND TRAINING OF ALL HEALTH PROFESSIONALS, HERE'S WHERE WE WANTED TO BUILD IN THE SUGGESTION THAT THE SECRETARY INCORPORATE IN THE HEALTH INFORMATION TECHNOLOGY INITIATIVES SOME REFERENCE TO FAMILY HISTORY OR INCORPORATE SOME ELECTRONIC FAMILY HISTORY TOOLS INTO THAT INITIATIVE.
SARA, I WOULD SUGGEST THAT WE SEPARATE OUT ADD INTO ANOTHER RESOLUTION, IT SEEMS LIKE WE'RE MIXING EDUCATION AND THE SECRETARY'S INITIATIVE PLUS IT WILL MAKE IT MORE OBVIOUS TO THE SECRETARY IF IT'S NOT BURIED AS A SECOND PART OF THE SECOND RESOLUTION.
WE HAVE HEALTH PROFESSIONALS, IF WE COULD SORT OF -- IN THE WORDS MISSING LATER, CHANGE IT TO HEALTH CARE AND PUBLIC HEALTH PROFESSIONALS ?
REID, ARE YOU BACK WITH US YET? OKAY.
JUST ON THIS ONE, I GUESS I HAVE SOME CONCERNS ABOUT -- THE DISCUSSION ABOUT K-HIT WAS BROADER THAN WHAT THIS -- THE TOPIC OF THE RESOLUTION OF EDUCATION AND TRAINING FOR HEALTH PROFESSIONALS IT REALLY IS A MUCH BROADER TOPIC THAN JUST THAT. SO I WOULD SUGGEST ONE OF TWO THINGS. ONE, TO NARROW THIS DOWN TO JUST TALK ABOUT THE EDUCATIONAL COMPONENTS TO BE CONSIDERED IN K-HIT FOR GENETICS INFORMATION, AND THEN PUT THE QUESTION TO THE COMMITTEE IF YOU WANT TO TAKE UP THE BROADER ISSUES OF K-HIT IN THE INTERNACE THAT THIS COMMIT IS SORT OF A SEPARATE SOMETHING, WHETHER IT'S A LETTER OR SOME OTHER SEPARATE TOPIC. I'D JUST BE CONCERNED IF YOU TRY TO CAPTURE EVERYTHING IN THIS RESOLUTION, BECAUSE IT'S A MORE NARROW TOPIC THAN IS ACTUALLY -- THAN THIS OPPORTUNITY OFFERS. SO IF YOU WANT TO NARROW IT DOWN, YOU COULD SAY SOMETHING INCORPORATES FAMILY HISTORY TOOLS AND PRACTITIONER EDUCATIONALS AND EDUCATION AL -- WELL, IT WOULD BE TOOLS AGAIN. SUPPORT, YEAH, THAT'S A GOOD WORD. TOOLS, SUPPORT HERE. AND I'M NOT SURE WHERE WE'RE GOING WITH PRIVACY AND CONFIDENTIALITY. THERE'S A BUNCH OF ISSUES THAT MAY NOT FIT WITH EDUCATION AND TRAINING? CAN I SUGGEST THAT PRACTICEAL EDUCATION SUPPORT, WHAT YOU'RE REALLY LOOKING AT IS POINT OF CARE EDUCATIONAL SUPPORT? BECAUSE PRACTITIONER MAY BE MISCONSTRUED AS CME, OR CONTINUING EDUCATION, WHICH IS, YOU REALLY WANTED AT THE POINT AT WHICH YOU'RE SEEING THE PATIENT.
I THINK I WOULD ALSO CHANGE THE ORDER, SO I'D HAVE WHAT YOU HAVE AS NUMBER TWO, I'D MOVE DOWN. IF WOULD -- IT WOULD BECOME THREE, AND THREE WOULD BECOME TWO. WHILE YOU'RE DOING THAT, I'M GOING TO READ THE NEXT RECOMMENDATION. ANY COMMENTS ON THIS?
THERE WAS A SUGGESTION DURING THIS DISCUSSION TO RECOGNIZE THE EFFORTS OF NICH PEG IN THIS POINT. I DON'T KNOW HOW WE DO THAT, BUT --
WE COULD JUST SAY TEN GAUGE HEALTH PROFESSIONALS SUCH AS NICHPEG, USE IT AS AN EXAMPLE.
I THINK HERE IT'S EVEN STRONGER THAN TO ENGAGE THEM. I THINK SOME OF THE RESOURCES THAT WE HEARD ABOUT BOTH FROM HERSA AND NICHPEG, WE WANT TO MAKE SURE THAT THESE RESOURCES ARE UTILIZED AND THAT THE PUBLIC AND EVEN THE PROFESSIONAL ORGANIZATIONS AND ACADEMIC INSTITUTIONS KNOW ABOUT THEM SO WE'RE NOT REINVENTING, THEY DON'T HAVE TO REINVENT THE WHEEL. SO THAT SOMEHOW IF WE COULD MAKE IT STRONGER IN TERMS OF RESOURCES THAT HAVE BEEN DEVELOPED BY STATE AND FEDERAL ORGANIZATIONS.
YOU MEAN NICHPEG AS AN EXAMPLE.
I WOULD JUST ARGUE PRIVATE, STATE AND FEDERAL ORGANIZATIONS.
AND NOT USE AS EXAMPLE?
IT'S FINE TO USE AN EXAMPLE. I JUST THINK WE NEED TO UTILIZE THE PRIVATE SECTOR.
OKAY.
IN READ ING THIS POINT. I WAS JUST STRUGGLING WITH WHAT THE FEDERAL RULE IS. IF WE HAVE AN AUDIENCE, HOW DO WE WANT TO USE THAT -- YOU KNOW, THAT SPACE THAT WE HAVE OF THE SECRETARY, AND SO I MEAN, I WOULD THINK LIKE FOR JUST BEING EFFECTIVE AS A DOCUMENT, FOR US BEING EFFICIENT. I THINK THIS NEEDS TO BE DONE, BUT WHETHER THIS -- SORT OF WHAT THE SECRETARY'S RULE THERE IS, ISN'T VERY -- ISN'T READILY APPARENT. AND SO I'D LIKE SOMEBODY ON THE COMMITTEE TO CLARIFY FOR ME WHAT THE SECRETARY'S ROLE IS THERE.
IT SEEMS LIKE IT'S SORT OF COVERED IN THE NEXT POINT AFTER THIS ONE. WHERE WE TALK ABOUT THE SPECIFICS --
RIGHT, THAT SEEMS -- THAT'S ONE OF THE RULES IF THE GOVERNMENT IS PROVIDING TECHNICAL ASSISTANCE, AND I THINK THE FEDERAL RULE IS TO DO THINGS THAT CAN BE ORDINARILY DONE IN THE PRIVATE SECTOR, BECAUSE THERE'S NO WILL OR THERE'S NOT ADEQUATE INCENTIVE TO DO THAT. AND IT'S NOT CLEAR TO ME THAT THAT RECOMMENDATION CAPTURES THE UNIQUE FEDERAL RULE.
SO MAYBE WHAT WE WANT TO SAY IS, PARTNER WITH THE PRIVATE SECTOR AND STATE ORGANIZATIONS.
I THINK ONE --
AND ENCOURAGE.
TO SUPPORT EFFORTS THERE, AND THE POINT KBEE LOW PROVIDE ADEQUATE TECHNICAL SUPPORT. BUT IT'S NOT AN INCONVENIENTRY. WHY THE FEDERAL GOVERNMENT SHOULD BE ENGAGED IN INVENTARY CATALOGING PROCESS.
WELL, ACTUALLY, THE CDC PROCESS IS DOING THAT YOU'RE CATALOGING, YOU KNOW, THE MOST COMMON GENES AND THE MOST COMMON DISEASES AND, I MEAN, SO IN A SENSE, YOU ARE PROVIDING SOME OF THAT INFORMATION THAT WOULD TAKE GENETICS AND GENOMICS TO THE COMMON -- THE FAMILY PRACTITIONER, ET CETERA.
I THINK WHAT I'M HEARING KATE SAY IS THAT YOU NEED TO GIVE THE SECRETARY SORT OF THE BEST POSSIBLE CHANCE FOR INTEGRATING GENOMICS, GENETICS AND FAMILY INITIATIVE IS SOMETHING THAT HE CAN TAKE AND SAY, OKAY, I'M GOING TO INTEGRATE FAMILY HISTORY TOOLS INTO THAT, BUT THERE ARE A NUMBER OF OTHER INITIATIVES THAT THE DEPARTMENT HAS, FOR EXAMPLE, THE STEPS INITIATIVE, WHICH IS A BIG INITIATIVE FOR THE PRESENTATION OF CHRONIC DISEASES AND HEALTH PROMOTION, AND THAT'S REALLY PREVENTION ORIENTED. SO BY ENCOURAGING THE SECRETARY TO LOOK ACROSS THE BOARD AND SAYING, OKAY, THESE ARE THE INITIATIVES THAT I OWN, THAT I'VE STARTED, BUT SO FAR I HAVEN'T SEEN THE ROLE OF GENETICS AND FAMILY HISTORY. BUT NOW THERE ARE MORE LEGS I COULD STAND ON, AND USE THESE AS FORUMS TO EMPOWER BIG INITIATIVES. AND I THINK THAT SINGLING OUT THE HEALTH INITIATIVE IS ONE THING. I DON'T THINK WE SHOULD FOCUS ON ONE THING. WE SHOULD GIVE THEM A BROAD RANGE OF ACTIVITIES THAT WOULD TOUCH THE LIVES OF ALL AGENCIES, BY ADDING THE CONCEPT OF INTEGRATING FAMILY HISTORY TOOLS AND GENETICS INTO WHATEVER WE DO. BECAUSE THAT WILL AFFECT THE PRACTICE OF HEALTH CARE AND DISEASE PREVENTION AND PROMOTION, THAT WOULD INCLUDE THAT LAST POINT WHICH IS WHAT DEBRA WAS TALKING ABOUT, WHICH IS WHAT WAS THE POINT ABOUT THE CATALOGING FUNCTION. I MEAN, IT'S ONLY A MINOR TOOL THAT -- OR A MINOR SERVICE THAT THE DEPARTMENT CAN PROVIDE. BUT I THINK YOU SHOULD GIVE THE DEPARTMENT THE BROADEST POSSIBLE ADVICE THAT AFFECTS MOST OF THE AGENCIES RATHER THAN ONE OR TWO. THAT WOULD BE MY ADVICE.
I MEAN, I AGREE WITH THAT, BUT I ALSO THINK THAT, YOU KNOW, THE POINT I WAS TRYING TO MAKE IN TERMS OF NOT NECESSARILY -- TO ME IT SEEMS LIKE THIS, IT SEEMS LIKE A SMALL, NARROW, SMALL FUNCTION, AND NOT NECESSARILY SOMETHING THAT, YOU KNOW, THE SECRETARY NEEDS -- IN HIS UNIQUE ROLE WOULD NECESSARILY ENGAGE IN. SO IF HE'S DOING IT OUT OF THE PROGRAM, AND I MEAN, I UNDERSTAND THAT, BUT I AGREE WITH YOU IN TERMS OF, YOU KNOW, GIVING, YOU KNOW, PROVIDING VEHICLES, YOU KNOW, SO -- TO THE EXTENT POSSIBLE TO PROVIDE VEHICLES WHERE THOSE TYPES OF RECOMMEND,S -- RECOMMENDSS CAN BE TACKED ON I THINK IS EXTREMELY IMPORTANT.
THERE'S A QUESTION THERE. SO IS THERE A ROLE FOR THE -- SOMEWHERE IN BETWEEN THESE, AS WE LOOK AT THESE MULTIPLE FEDERAL EFFORTS? AND HAVING SOME PLACE OR SOME MECHANISM FOR UNDERSTANDING WHAT IS BEING LEARNED WITHIN THOSE EFFORTS AND SO BEING ABLE TO LINK THAT BACK TO THE PRIVATE SECTORS, TO THE EDUCATIONAL SECTORS, ET CETERA, SO THAT AS THIS WORK IS BEING DONE, IT DOESN'T END UP BEING DONE IN ISOLATION, BUT THE FEDERAL GOVERNMENT IS ACTUALLY CATALOGING A WAY THAT IT CAN BE EASILY DISSEMINATED ACROSS THESE GROUPS. SLIGHTLY DIFFERENT, BUT I THINK IF YOU'RE NOT SITTING IN THIS ROOM, YOU MAY NOT KNOW ABOUT THE WORK THAT'S DONE ACROSS THE MULTIPLE AGENCIES.
I MEAN, ONE OF THE THINGS THAT COME OUT OF THIS DEPARTMENT ISED ISSUE OF COARD -- COORDINATION, AND SPEAKING WITH ONE VOICE, SO I THINK, YOU KNOW, IF WHAT WE HAVE HERE COULD BE FRAMED IN TERMS OF SPEAKING WITH ONE VOICE AND -- OR ONE DEPARTMENT AND REALLY UNDERSTANDING TO MAKE OUR DEPARTMENT MORE EFFICIENT AND EFFECTIVE IN THAT AREA, I MEAN, I -- YOU KNOW, I MEAN, THAT WOULD RESIN ATE. RESONATES IN MY MIND WHAT I HEAR COMING OUT WITH WHAT I HEAR COMING OUT OF THE DEPARTMENT.
IF WE WERE TO COORDINATE AND DISSEMINATE GENOMICS INFORMATION, WOULD THAT BE BETTER?
YES. I THINK IT RESONATES WITH WHAT, YOU KNOW, I HEAR COMING OUT OF THE DEPARTMENT, AND AT LEAST THE GOALS OF THE DEPARTMENT.
TO DETERMINE WHAT THE SECRETARY'S ROLE IS, IT IS IMPORTANT TO PHRASE THESE IN WAYS THAT HE IS ABLE TO RESPOND. IN ADDITION TO WHAT SHE'S SAYING, I'M STRUGGLING WITH THE PROMOTE, THE SOFTNESS OF THE LANGUAGE, SOMEONE SUGGESTED WE STAND UP A LITTLE TALLER AND SAY, YOU KNOW, WE MAY NOT GO AS FAR AS DIRECT GENICS, BUT TO LOOK AT WHAT WE'RE -- AND THEN SORT OF ENVISION HOW WOULD HE CARRY THIS OUT? I THINK THE WORD SHE JUST MENTIONED ARE THE OPERATIVE WORDS, IF YOU WILL, THAT GET THE JOB DONE. DO WE WANT TO THINK IN TERMS OF A PHONE CALL OR DO WE WANT TO TAKE THIS TO SOME MEETING IT OR HOW DO WE WANT IT TO PLAY OUT.
OF THAT COORDINATION AND DISEMMENATION.
FROM THIS DISCUSSION, CAN WE KIND OF TAKE NUMBER TWO UP THERE, WHICH IS, I THINK WHAT I'M HEARING, WE'VE PULLED OUT ONE INITIATIVE, AND THERE'S OTHER INITIATIVES, MAYBE WE CAN HAVE FAMILY TOOLS IN THE INITIATIVES OF THE DEPARTMENT OF HEALTH AND HUMAN SERVICES FOR EXAMPLE, KHIT, STEPS, THAT TYPE OF THING. AND COORDINATE THE DISEMMENATION OF THIS INTO PRACTICE THROUGH PRIVATE STATE AND FEDERAL EFFORTS. I MEAN, BUT GET IN THERE THAT YOU WANT THESE THINGS DEVELOPED THROUGH THE DEPARTMENT OF HEALTH AND HUMAN SERVICES, AND THEN YOU WANT THAT INFORMATION THAT'S DEVELOPED THERE DISSEMINATED INTO PRACTICE, AND THAT'S GOING TO INVOLVE COORDINATION AND USE OF THIS INFORMATION BY PROFESSIONAL ORGANIZATIONS.
I HEAR WHAT YOU'RE SAYING, ONE OF MY QUESTIONS FOR THE AGENCIES IS THE EXTENT TO WHICH THEY CAN COORDINATE HOW THE PROFESSIONAL SOCIETIES ACTUALLY USE THIS AS OPPOSED TO A COORDINATION OF HOW THEY DISSEMINATE THE INFORMATION THEY HAVE GATHERED. SO I SORT OF SEE IT AS A COLLECTING OF WHAT'S GOING ON, AND BEING ABLE TO DISSEMINATE THAT AND BEING ABLE TO WORK WITH OTHER ORGANIZATIONS BUT NOT REALLY BEING ABLE TO COORDINATE THAT AND WORK WITH THE ACTIVITIES OF THOSE PROFESSIONAL ORGANIZATIONS.
I THINK MOVING -- THE DISCUSSION WE'RE HAVING NOW ABOUT SHOWING, GIVING THE SECRETARY THE GUIDANCE TO LOOK AT THIS WITHIN ALL THOSE KEY INITIATIVES IS REALLY CRITICAL AND IS A BROADER SCOPE THAN ADDING IT INTO SOME OF THESE MORE SPECIFIC PROCESSES, YOU'RE CLOSER TO THAT IN NUMBER ONE, IN PROMOTING AND ACTIVELY INCORPORATE. I THINK IF YOU BRING THIS OVERALL CONCEPT OF HOW THIS FITS WITHIN MANY OF THE -- OR PROBABLY ALL OF THE SECRETARIES INITIATIVES, I SEE IT AS HIGHER UP THE LIST AND MORE OF AN OVERRIDING AND THEN FROM THEN ON, YOU'RE SHOWING HIM SOME EXAMPLES. I THINK YOU'RE REALLY TALKING ABOUT DEPARTMENT INITIATIVES.
I WOULD ASK THAT WE TRY TO GET THE BIG POINTS DOWN OVER THE NEXT 10 MINUTES AND TAKE A 3 TO 5 MINUTE BREAK TO TRY TO MAKE SURE WE CAN GET BACK TO READ AND HAVE HIM HEAR US AS WELL AS US HEARING HIM. WE'RE GOING TO TRY TO ROUGH THEM OUT THIS EVENING.
OKAY.
ANOTHER BIG IDEA THAT NEEDED TO BE ADDED AS A SEPARATE BULLET POINT WAS THE EDUCATION OF THE PUBLIC. SO THAT'S A WHOLE SEPARATE POINT THAT NEEDS TO BE ADDED.
OKAY. TO GET BACK -- WHERE I THOUGHT YOU WERE GOING, THERE'S SORT OF TWO DIRECTIONS, ONE IS TO ENCOURAGE, PROMOTE, RAISE WITH THE SECRETARY AND THE DEPARTMENTAL LEADERS TO INCORPORATE THE SORT OF CONCEPTS OF GENOMICS AND GENETICS INTO A VARIETY OF ONGOING ACTIVITIES, THE OTHER DIRECTION WHICH I THOUGHT YOU WERE GOING THERE FOR A WHILE AND NOW I'VE LOST TRACK OF THE NUMBER THERE'S, BUT IS TO SAY SOMETHING LIKE RECASTING ONE OF THE NUMBERS THAT'S UP THERE. DIRECT THE HHS AGENCIES TO WORK TOGETHER AND WITH THEIR OTHER -- WITH FEDERAL, STATE AND PRIVATE PARTNERS TO COLLECT ALL OF THE HEALTH EDUCATION -- OR THE AGAIN EMICS EDUCATION PROGRAM, I DON'T REMEMBER WHERE WE WERE. AND THEN WORK AGAIN WITH THESE SAME PARTNERS TO PROMOTE THE USE OF THESE MATERIALS THROUGH THE VARIOUS AVENUES THAT THEY HAVE, AND IF YOU WANTED TO ENCOURAGE HHS TO GO FURTHER, EVEN THEN JUST WITHIN HHS AGENCIES, COULD YOU EVEN ASK THAT IT BE DONE IN AN INTERAGENCY SETTING LIKE THE -- THROUGH THE QUALITY INTERAGENCY TASK FORCE THAT EXISTS, IT'S A FORUM FOR INTERAGENCY COOPERATION. AND THEN THE SECOND STEP IS, ONCE YOU HAVE THE -- THE COLLECTION IN PLACE, AND YOU'VE SORT OF MADE THE FEDERAL STATEMENT THAT THIS IS WHAT WE SHOULD BE DOING, YOU THEN ASK ALL THE AGENCIES TO GO BACK AND LOOK WITHIN THEIR OWN PROGRAMS WITHIN THEIR OWN REGULARS -- REGS WITHIN THEIR OWN ACTIVITIES, HOW DO YOU APPROPRIATELY INCORPORATE IT INTO WHAT THEY'RE DOING. WHICH CERTAINLY FOR VA AND DOD, FOR INSTANCE, WHO RUN HEALTH PROGRAMS. YOU HAVE A MOREDIRECT IMPACT, YOU KNOW, THEN YOU DO JUST PUTTING OUT RECOMMENDATIONS TO HEALTH PROFESSIONALS. I'M SORRY, SIR, YOU PROBABLY WEREN'T ABLE TO CAPTURE ALL THAT. I WAS REALLY LOOKING DOWN THERE WHERE YOU HAVE THE RED NUMBER ONE SO INSTEAD OF FRAMING IT, BECAUSE I THOUGHT THAT'S WHERE THE DISCUSSION WAS, INSTEAD OF FRAMING IT AS ENGAGE HEALTH PROFESSIONALS, BUT RATHER TO SAY DIRECT HHS AGENCIES OR DIRECT DHHS TO WORK AMONG THEMSELVES AND WITH, YOU KNOW, THE STATE FEDERAL AND PRIVATE ORGANIZATIONS THAT YOU HAVE LISTED FURTHER DOWN. TWO, NOT FACILITATE, BUT ACTUALLY CATALOG AND DISSEMINATE AGAIN OMICS APPLICATIONS. AND THEN WORK TOGETHER TO IMPLEMENT WHERE APPROPRIATE WITHIN ONGOING ACTIVITIES OR ONGOING PROGRAMS. AND WE CAN WORK ON WORD SMITHING THAT. BUT I DON'T KNOW IF YOU WANT TO GO THAT FAR TO BE THAT DIRECTIVE.
MY CONCERN IS, I THINK WE'RE LOSING THE SPIRIT OF WHAT IS NOW THE RED NUMBER ONE, BECAUSE WHAT THE EDUCATIONAL GROUPS WERE ASKING FOR WERE CASES THAT ARE RELEVANT TO EVERY DAY PRACTICE AND SO THAT THEY COULD DO CASE-BASED EDUCATION. AND THIS IS NOW MORE OFED INTO SOMETHING THAT'S NOT GETTING AT, IT'S NOT CLEARLY STATED IN THIS ONE TO BEGIN WITH, WITH WHAT YOU ARE LOOKING FOR ARE CASES FOR INDIVIDUAL PURPOSES, FOR CASE-BASED TEACHING. AND SO NOW THAT WHOLE CASE-BASED TEACHING, THE NEED TO GET THE CASES THAT ARE OUT THERE IN EVERY DAY PRACTICE TODAY HAS BEEN LOST FROM THIS LIST.
I'M WONDERING IF THAT'S JUST NOT A SEPARATE ISSUE IN TERMS OF SPORT FOR PROGRAMS THAT WILL DEVELOP AND HELP DISSEMINATE THESE SPECIFICATIONS OR INTERACTIVE LEARNING MODULES OR WHATEVER THAT MIGHT BE.
I'M WONDERING IF THAT'S GOING TO BE LISTED AS A SEPARATE -- IT'S LISTED AS ANOTHER DIRECTION. TWO OTHER THINGS GIVEN OUR 10-MINUTE TIME FRAME THAT'S JUST ABOUT USED UP, IF WE LOOK AT SOME OF THE OTHER RECOMMENDATIONS, THERE WAS ONE WITH REGARD TO WHAT WAS NUMBER FIVE THAT'S ENCOURAGING ACCREDITING LIFE INSURANCE -- WHAT WE DON'T HAVE REPRESENTING --
IT WOULD BE OF HEALTH CARE AND PUBLIC HEALTH PROFESSIONALS. SO CERTIFICATION BODIES FOUR. HEALTH CARE, UP IN THE 1st LINE SARA, BODIES 4 HEALTH CARE AND PUBLIC HEALTH PROFESSIONALS.
WITH REGARD TO WHAT WAS NUMBER 6, A SPECIFIC MENTION WAS MADE FOR US TO KEEP IN MIND THAT CULTURAL DIVERSITY AND KPE TENSECY INCLUDE THE DISABILITY COMMUNITY, SO I WOULD QUESTION WHETHER OR NOT YOU'D LIKE TO ASK FOR SPECIFIC WORDING WITH REFERENCE TO THE DISABILITY COMMUNITY FOR NUMBER 6? ANOTHER ITEM THAT WE ACTUALLY -- I DON'T THINK I HAVE TIME TO WORTHSMITH RIGHT NOW, BUT IT WAS A STRONG POINT WAS TO HAVE A RECOMMENDATION THAT RELATED TO THE ETHICAL LEGAL AND SOCIAL ISSUES AND TRAINING.
ANY OTHER BIG ISSUES?
I JUST HAD ONE. THE THING ABOUT DEBRA'S POINT ABOUT THE PUBLIC. I SEE THEY'RE TRYING TO WORDSMITH SOMETHING. I JUST WANTED TO POINT OUT THAT JOE McINERNEY DID PROVIDE WORDING FOR THAT, I THOUGHT THAT WAS PRETTY STRONG. MAYBE THAT SHOULD BE CONSIDERED AS THE WORDSMITH AD. THE ONE THING I WANTED TO ADD TO IT WAS TO SAY THAT THE INITIATIVES SHOULD BE DONE IN A CULTURALLY SENSITIVE AND APPROPRIATE MANNER, SO WE KNOW THE INITIATIVES THAT ARE OUT THERE, THAT IT'S ENCOURAGED THAT SOME OF THEM ARE -- CAN BE FOCUSED IN CERTAIN COMMUNITIES THAT OTHERWISE MAY NOT RESPOND TO OTHER TYPES OF EDUCATION.
THANK YOU.
ANY OTHER BIG ISSUES?
OKAY. IF NOT, SARA, DO YOU -- WE CAN TRY TO WORK ON THESE TONIGHT AND BRING THEM BACK. BUT I THINK WE WANT TO MOVE ON SO WE DON'T SHORT CHANGE THE PUBLIC. WHAT WE'RE GOING TO DO NOW IS TAKE A 3 TO 5 MINUTE BREAK. PLEASE DON'T GO FAR, WE'RE REALLY JUST TRYING TO LINK BACK UP WITH REID TUCKSON. SO PLEASE, PLEASE TRY NOT TO GO FAR.
BEFORE WE TURN TO THE COMMENT PORTION OF THE MEETING. I'D LIKE TO TURN TO DR. TUCKSON WITH GENETIC DISEASES IN NEWBORNS AND CHILDREN, IN WHICH HE PARTICIPATED LAST WEEK. THIS CONGRESSIONAL MANDATED COMMITTEE HAS CHARGED A PRILS TO THE SECRETARY OF HEALTH AND HUMAN SERVICES CONCERNING GRANTS AND PROJECTS AUTHORIZED UNDER SECTION 1109 OF THE PUBLIC HEALTH SERVICE ACT AND TECHNICAL INFORMATION TO DEVELOP POLICIES AND PRIORITIES FOR THIS PROGRAM. THAT WILL ENHANCE THE ABILITY OF THE STATE AGENCIES TO PROVIDE NEWBORN SCREENING, COUNSELING AND HEALTH CARE SERVICES FOR CHILDREN HAVING OR AT RISK FOR INHERITABLE DISORDERS. GIVEN THE MUTUAL INTEREST IN AGAIN ITICS AND THE RELEVANCE OF OUR COMMITTEES TO ANOTHER, REID IS A NONVOTING LIAISON SO S TO THE ADVISORY COMMITTEE. AND I WOULD REMIND EVERYONE THAT THE LARGEST BODY OF GENETIC TESTING THAT IS DONE IN THE UNITED STATES IS THROUGH NEWBORN SCREENING WITH $4 MILLION BABIES BORN EACH YEAR. EACH ONE OF THEM TESTED FOR BETWEEN 3 AND 30 DISORDERS. WITH THAT AS A PREAMBLE, REID, I HOPE WE CAN PROCEED.
WELL, I HOPE THAT YOU'VE -- IS IT -- AM I ABLE TO BE UNDERSTOOD?
YES.
ALL RIGHT. I APPRECIATE THE OPPORTUNITY OF REPRESENTING OUR COMMITTEE ON THIS ADVISORY COMMITTEE ON INHERITABLE DISORDERS AND GENETIC DISEASES. IT WAS APRIL THAT CHAIRED -- IT ISABLELY CHAIRED BY DR. RODNEY HOWE WHO IS KNOWN TO MANY OF US. AND MICHELLE WHO HAS BEEN INVOLVED WITH OUR COMMITTEE IS THE -- ONE OF THE PRINCIPLE STAFF PEOPLE FOR THAT OTHER EFFORT, AND SHE'S DONE A GREAT JOB. YOU HAVE INTRODUCED THE MISSION OF THAT COMMITTEE. DURING ITS FIRST MEETING LAST WEEK. AFTER MUCH TESTIMONY FROM MAINLY FEDERAL AGENCIES AND OTHERS, WE'VE HEARD A LOT ABOUT THE STATE OF THE ART AND THE CHALLENGES THAT ARE INVOLVED IN THE GENETIC BASES OF NEWBORN SCREENING. AS A RESULT, THE COMMITTEE DECIDED TO FOCUS ON A FEW KEY AREAS IN WHICH YOU CAN MAKE A SIGNIFICANT IMPACT. FIRST THE PRELIMINARY GOALS INCLUDE MAKING RECOMMENDATIONS FOR A UNIFORMED PANEL OF CONDITIONS FOR NEWBORN SCREENING. ASSESSING THE CAPACITY NEEDS OF STATES IN BEING ABLE TO IMPLEMENT THOSE, AND MAKING RECOMMENDATIONS ON PARENT EDUCATION, NOTIFICATION AND INFORMED DECISION MAKING. THIS RECOMMENDATION RESULTS BECAUSE THERE IS AN EXTRAORDINARY AMOUNT OF VARIABILITY IN THE WAY INDIVIDUAL STATES EITHER REQUIRE, MANDATE OR CONDUCT NEWBORN SCREENING ACTIVITIES. AND IT IS NOT BASED UPON A CONSISTENT UNDERSTANDING OF THE BEST SCIENCE IN AGAIN ET IKS SCREENING, IT IS NOT BASED ON A CONSISTENT APPLICATION OF THE BEST SCIENCE. AND IT IS A DIFFERENTIAL IN TERMS OF THE ABILITY OF STATES TO COLLECT AND ACCUMULATE INFORMATION FOR LONG TERM FOLLOW-UP. THE COMMITTEE ALSO PLANS TO STUDY NEWBORN SCREENING TESTS AND USE THE PRODUCT OF THEIR WORK TO DEVELOP RECOMMENDATIONS ON A NATIONWIDE CORE SET OF TESTS. NOW, THIS WORK WILL REFINE AND EXTEND A HERSA COMMISSION STUDY THAT MIKE WATSON AND HIS TEAM FROM THE AMERICAN COLLEGE OF MEDICAL GENETICS HAVE BEEN CARRYING OUT. WHICH IS SORT 6 A LANDMARK WORK IN THIS AREA. THE COMMITTEE ALSO PLANS TO LOOK AT THE COSTS OF INDIVIDUAL GENETIC TESTS AND THE COSTS AT THE STATE LEVEL INCLUDING ADMINISTRATIVE COSTS. THE COMMITTEE WILL CAREFULLY CONSIDER STATE SPECIFIC INFORMATION SUCH AS WORKFORCE NEEDS, THE ABILITY TO ASSESS AND TRANSLATE TECHNOLOGY INTO PRACTICE, AND PUBLIC EDUCATION. IN ADDITION, RECOGNIZING THAT NEW SCREENING TESTS ARE GOING TO BE FORWARD IN AN ACCELERATED WAY IN THE NEAR FUTURE. THE COMMITTEE PLANS TO CONSIDER A PROCESS WHERE NEW TESTS SHOULD BE INTEGRATED AND INCORPORATED INTO THE DIAGNOSTIC PANAPLE AVAILABLE FOR NEWBORN SCREENING. THE COMMITTEE IS INTERESTED IN RESEARCH NEEDS TO IMPROVE NEWBORN -- TO ASSIST IN RECOMMENDATIONING GAPS IN KNOWLEDGE THAT WOULD THEN FOCUS ON PRIORITY RESEARCH INITIATIVES AND NEEDS. AND THEY'RE ALSO GOING TO WORK CAREFULLY ON CREATING A WORKING GROUP ON INTERAGENCY COORDINATION. THE ONLY OTHER POINT THAT I WOULD MAKE IS THAT THE COMMITTEE WAS VERY IMPRESSED BY OUR COMMITTEES STRATEGIC PLANNING EFFORT WHERE WE ENGAGED IN THAT PROCESS OF IDENTIFYING, YOU KNOW, PRIORITY CONDITIONS THAT REQUIRE IMMEDIATE AND LONG-TERM ACTION. THEY WERE INTERESTED IN HOW WE ACCOMPLISHED THAT TASK, AND THEY HAVE BEEN GIVEN INFORMATION REGARDING THE PROCESS AND LESSONS LEARNED THAT WE HAD FROM OUR EXPERIENCE. AND SO I THOUGHT THAT WAS VERY USEFUL THAT OUR COMMITTEES INNOVATIONS HAVE NOW SPREAD TO OTHERS. WITH THAT, LET ME STOP, IT WAS A VERY GOOD FIRST MEETING, AND I AM ENCOURAGED BY THE DIRECTION THAT THIS COMMITTEE IS SETTING OFF ON.
THANK YOU, REID. ANY QUESTIONS OR COMMENTS FOR REID?
I JUST WANTED TO KNOW IF THERE'S A WRITTEN SUMMARY THAT EITHER YOU HAVE OR WILL BE PROVIDED BY THE PEOPLE WHO RAN THE MEETING SO THAT WE COULD GET THAT SORT OF FOR OUR BACKGROUND READ SOMETHING.
TO -- TERRIFIC. YES, THERE IS A WRITTEN SUMMARY, I'M SURE THAT THAT WILL BE EASILY MADE AVAILABLE TO YOU. AND I'LL ASK SARA TO HELP ME OUT ON THAT.
ANY OTHER QUESTIONS OR COMMENTS? IF NOT, REID, WE KNOW WE'RE ABLY REPRESENTED ON THAT COMMITTEE, AND THANK YOU FOR DOING THAT.
WELL, I'D ALSO LIKE TO SAY THAT I ALWAYS HAD TERRIFIC SUPPORT FROM OUR TEAM AS I PARTICIPATED. JUST NOTE OUR STAFF ALWAYS IS ON THE CASE.
THANK YOU VERY MUCH. WILL YOU BE ABLE TO STAY WITH SNUS.
YES, I'LL BE THERE FOR SOME OF THE REIMBURSEMENT THINGS, SO I'LL STAY AROUND.
THANK YOU.
WITH THAT, WE NOW MOVE ON TO THE PUBLIC COMMENT. ONE OF OUR CRITICAL FUNCTIONS IS TO SERVE AS A PUBLIC FORUM FOR DELIBERATIONS ON THE BROAD RANGE OF HUMAN HEALTH AND SOCIAL ISSUES RAISED BY THE DEVELOPMENT AND USE OF GENETIC TECHNOLOGIES, SO WE GREATLY VALUE THE INPUT WE RECEIVE FROM THE PUBLIC. WE SET ASIDE TIME EACH DAY OF OUR MEETING TO HEAR FROM THE PUBLIC. AND WE WELCOME AND APPRECIATE THE VIEWS THAT YOU ALL SHARE WITH US. WE ALSO HAVE RECEIVED WRITTEN COMMENT THAT IS CAN BE FOUND IN EVERYONE'S TABLE FOLDERS, ESPECIALLY I WOULD LIKE TO CALL YOUR ATTENTION TO SEVERAL REQUESTS THAT ADDITIONAL TIME BE PROVIDED TO ALLOW THE PUBLIC TO COMMENT ON THE DRAFT DOCUMENTS BEING CONSIDERED AT THIS MEETING. IN THE INTEREST OF TIME, I ASK OUR COMMENTERS TO PLEASE KEEP YOUR REMARKS TO FIVE MINUTES IF AT ALL POSSIBLE. TODAY WE WILL BE HEARING FROM -- AND I'LL GIVE THIS IN ORDER SO YOU'LL KNOW WHEN YOU'RE UP, KATHLEEN RAND REID FROM THE RAND REID GROUP. ANDREW FOSSETT FROM THE AMERICAN BOARD OF GENETIC COUNSELING AND BARBARA HAND LYNN FROM HANDLYNN ASSOCIATES. FIRST, KATHLEEN -- OKAY, PLEASE COME UP TO THE TABLE, AS KATHLEEN IS DOING.
GOOD AFTERNOON. FIRST OF ALL, LET ME SAY THANK YOU VERY MUCH TO DR. McCABE FOR JUST A COUPLE OF MORE EXTRA MINUTES. AND I WANT TO BRING TWO ISSUES TO THE RECORD AND THE TABLE. I FOLLOWED THE BOUNCING BALL. AND THAT IS, I STUCK TO THE PRIORITIES AND TO THE DETERMINATIONS SUCH AS OVERARCHING ISSUES AND THE PRIORITY SHORT-TERM AND THE HIGHEST PRIORITY REQUIRING IN-DEPTH STUDY. THE TWO COMMENTS THAT I WOULD LIKE TO BRING TO THE TABLE, THE FIRST ONE WOULD BE CONTINUING ON GENETIC EDUCATION AND TRAINING OF HEALTH PROFESSIONALS SHORT TERM. I AM AN ANTHROPOLOGIST AND AN EDGE KNOW MARKETER, AND I WANTED TO LOOK AT GENETIC ISSUES THAT TYPICALLY COME INTO COMMUNITIES OF COLOR, ESPECIALLY THOSE THAT ARE, WHERE THE COMMUNITIES ARE WHAT'S KNOWN AS HYPERSEGREGATED. IN OTHER WORDS, THEY ARE MORE THAN 95% OF THAT PARTICULAR GROUP, BECAUSE OFTEN TIMES THOSE PARTICULAR COMMUNITIES, IT'S A LITTLE BIT MORE DIFFICULT TO GET INFORMATION AND ASK SOME OF THE QUESTIONS, AND YET IF THEY'RE TO BE SERVED AS WELL. THEN THOSE ARE THE KINDS OF COMMUNITIES WE LOOK AT. FIRST OF ALL, LET ME ALSO SAY THANK YOU TO JOE McINERNEY WHO WAS GRACIOUS ENOUGH IN JANUARY TO ALLOW ME TO PRESENT A POSTER FOR THE NICHPEG PETE MEETING, AND THE TITLE WAS CONTROVERSIAL, IF WAS CALLED U.S. PRISON POLICIES, THE BABY DADDY AND GENETICS IN THE HOOD. I THINK YOU UNDERSTAND WHY I SAID IT'S CONTROVERSIAL. BUT IT'S CRITICAL THESE ISSUES ARE ADDRESSED. THE KEY COMPONENTS WERE THE REMOVAL AND ENKARS RACE OF YOUNG BLACK MALES FROM INTERCITY NEIGHBORHOODS AND SOME RURAL TOWNS. THE HIGH INCIDENCE OF TEENAGED MORTALITY FROM VIOLENCE, POVERTY AND POOR HILLS, THE RESULTS SKEWING OF THE MALE TO FEMALE RATIO, THE PHENOMENA OF MULTIPLE MEETINGS WHICH OFTEN RESULT IN HIGH LEVELS I.E. THE BABY DD DADSDY. A REVIEW OF COHORTS BORN DURING THE HEIGHT OF THE WAR ON DRUGS FROM 1990 TO 1995, THAT ARE CURRENTLY ON AVERAGE REACHING PUBERTY IN THE YEARS 2003 TO 2008. THE PLATING IN MANY OF THESE CASES BECAUSE WE HAVE A MEMBER OF THE COMMUNITY THAT'S OFTEN MISSING NOW, WHICH IS THE GATEKEEPER, THE GENE YO LOGICAL GATEKEEPER, WHICH IS USUALLY LITTLE OLD LADIES WHO USED TO KNOW WHO EVERYBODY WAS AND WHO BELONGED TO WHOM. SOME OF THESE MATINGS MAY BE BETWEEN HALF SIBS WHO'S FAMILIAL RELATIONSHIPS MAY NOT BE KNOWN WITHIN THE GENERAL COMMUNITY. AND AN INCREASE OF AUTOSOMAL DISORDERS AND POSSIBLY GENETIC RED LINING. THE REASON IP BRING IT TO THIS PARTICULAR GROUP IS BECAUSE PART OF THE COMMENTS THAT I GOT FROM THE HEAD OF SOME OF THE GENETIC ORGANIZATIONS, ESPECIALLY STATE RUN WERE CHILLING, AND THEY WERE CHILLING IN THIS RESPECT. AS MUCH AS I WAS TOLD THAT I WAS RIGHT, IN FACT I EVEN HAD A DEEP CONVERSATION WITH BARBARA WILLIS HARRISON TO SEE -- TO GET A REALITY CHECK TO SEE IF WHAT I WAS THINKING WAS ABSOLUTELY TRUE. AND MISHARRISON TOLD ME, OH, YEAH, WE SIGH THIS, YOU KNOW, WHEN I'M OUT DOING PEDIGREES, THIS IS A REALITY, AND YET ONE OF THE PROBLEMS THAT WE RUN INTO IS THIS ISSUE OF GENETICS AND THE WHOLE COMING TO TERMS WITH THE COMMUNITY AND PC. WHAT I FOUND WHEN I PRESENTED THIS POSTER, AND I'VE HAD CONVERSATIONS WITH MR. McINERNEY AS WELL. MANY OF THE GENETIC COUNSELORS SAID, YES -- NO, WE SEE THIS IN THE PEDIGREE, BUT THE PROBLEM IS, BECAUSE WE'RE WHITE, WE CAN'T DO THE PC PART BECAUSE SOME PEOPLE MIGHT THINK IT'S EUGENICS, NOW, I'M BRINGING THESE CONTROVERSIAL ISSUES, ANYONE THAT KNOWS ME KNOWS THAT I'M PRETTY MUCH THE ONE THAT ALWAYS TRIES TO BRING UP THESE KINDS OF ISSUES, BECAUSE SOME PEOPLE DON'T. I'M VERY COMFORTABLE DOING THIS. ONE OF THE THINGS WE REALLY NEED TO WORK ON THIS IS AN EMERGENT SITUATION, BECAUSE I ALSO WENT TO CHICAGO, DETROIT, OAKLAND AND PHILADELPHIA AND CHECKED IN AND FOUND THAT THIS IS ALSO A REAL BIG ISSUE THERE. IN MANY OF THE URBAN AREAS AND IT'S EMERGING, AND I WOULD SAY THAT WE NEED TO GET ON THIS AND TAKE A LOOK. ONE OF THE THINGS WE NEED TO DO IS CREATE KNEES BRIDGE WHERE'S WE HAVE DEEP CONVERSATIONS AROUND WHO'S WHITE AND EUGENICS AND PC ISSUES, GET OVER IT. WE NEED TO HAVE DEEP CONVERSATIONS SO THAT WE CAN PROTECT THESE COMMUNITIES. LET ME MOVE QUICKLY, BECAUSE I DON'T WANT TO RUN OUT OF TIME. I THROW THAT OUT THERE AS AN ISSUE. THE SECOND ONE IS -- AND VERY QUICKLY, YOU'VE ALREADY IDENTIFIED THE DIVERSE REPRESENT FACE OF THE POPULATION AND CLINICAL TRIAL HAS PARTICULAR IMPORTANCE IN AGAINETIC RESEARCH, SINCE GENETIC VARIATION AMONG POPULATIONS MAY ACCOUNT FOR DIFFERENCES IN DISEASE PREVALENCE, DRUG REACTIONS, IS A SEPTEMBERABILITY TO ENVIRONMENTAL TRIGGER AS MONG OTHERS. THERE'S A PROBLEM, AND THE PROBLEM IS, THAT I JUST CAME BACK FROM CALIFORNIA SPENDING TIME GOING BACK AND FORTH AND BEING EXPERT WITNESS IN SEVERAL CASES WHERE MINORITIES ARE NOW SUING -- THEY'RE BECOMING MORE SOPHISTICATED ABOUT GENETICS AND SUING BECAUSE THEY'RE HAVING SERIOUS ADVERSE EVENTS WITH REGARD TO THEIR REACTION TO VARIOUS PRESCRIPTION DRUGS AND RESPECT TO DISEASES. THEY'RE BEGINNING TO SUE THE INSTITUTIONS, HOSPITALS, HMOs THE PHARMACEUTICAL MANUFACTURERS. OFTEN THESE PHYSICIANS RELY ON THE DETAILS AND WARRANTS ISSUED TO THEM FROM THE PHARMACEUTICAL MANUFACTURERS FOR THEIR PRESCRIBING GUIDELINES, THERE IS NOW A SCIENTIFIC GAP AND A LEGAL GAP THAT CAUSES INJURY TO BOTH THE MINORITY PATIENT AND IN SOME INDICATIONS THE MINORITY PHYSICIAN. WHEN A LAWSUIT OF THIS TYPE IS IT FILED, ALL PARTIES ARE SUED. THE HOSPITAL, THE HMO, THE PATIENT'S PHYSICIANS AND THE PHARMACEUTICAL MANUFACTURE. BUT THE PHARMACEUTICAL MANUFACTURER'S HOWEVER HAVE AN AUTOMATIC DEFENSE, NAMELY THE LEARNED INTERMEDIARY DOCTOR, OR THE LID. THE LID CAN BEST BE DESCRIBED AS THE MANUFACTURE OWES NO DUTY TO WARRANT TO THE PATIENT BUT TO THE LEARNED AND INTERMEDIARY, HICHLT E. THE PRESCRIBING PIGS. -- PHYSICIAN. THE LIABILITY RESTS WITH THE PHYSICIAN TO THE PATIENT. HOWEVER, THIS LEARNED AND INTERMEDIARY DOCTRINE HAS SEVERAL CAVEATS, MAINLY, THE INFORMATION GIVE TONIGHT PHYSICIAN MUST BE ADEQUATE. AND YOU AS A COMMITTEE HAVE ALREADY IDENTIFIED THE FLAW IN THIS PROCESS. THE -- WHERE YOU SAY FARM COGENOMICS, THE PHARMACEUTICAL INDUSTRY HAS VERY LITTLE INCENTIVE TO DO STUDIES ON "ALREADY MARKETED DRUGS OR AGAIN ERIC DRUGS." SUCH STUDIES ARE EXPENSIVE, APPEAR TO OFFER NO ADVANTAGE TO THE STUDIES. CREATING A STRATIFIED MARKET FOR THEIR PRODUCT. THIS DISCONNECT CAUSES SEVERAL DOWNSTREAM CONSEQUENCES, NUMBER ONE IT RELIEVES THE DRUG MANUFACTURERS OF A LOOKBACK, AND THE ACTION WITH CURRENT INFORMATION ON PHARMACO GENOMIC INFORMATION. IT DOES NOT ALLOW FOR THE DEVELOPMENT OF NEW INFORMATION WHERE MINORITY PARTICIPANTS WERE NOT INCLUDED AND NEED TO BE INCLUDED AND THEY NEED TO HAVE THAT LOOK BACK. FROM AN ELSIE PERSPECTIVE, THIS INCREASES THE DISCRIMINATORY ASPECTS WHICH ALREADY FACE MINORITY PHYSICIANS, HMOs, MANAGED CARE, ET CETERA. BUT IT FURTHER REDUCE THEIR NUMBERS IN THE RANKS. AND TO SUM IT UP, THIS MAY WIND UP GIVING A LOOK SEE ALSO INTO SOME HEALTH DISPARITIES, I WOULD ASK THAT YOU REVIEW THESE RELATIONSHIPS BECAUSE THE SAME RELATIONSHIPS THAT OCCUR WITH THE DRUGS ARE GOING TO BE THE SAME KIND OF RELATIONSHIP THAT IS YOU'RE GOING TO EXPERIENCE WHEN YOU LOOK AT PHARMACOGENOMICS AND TESTING. THANK YOU VERY MUCH. I HOPE THAT'S BEEN HELPFUL.
THANK YOU DR. REID, ARE THERE COMMENTS OR QUESTIONS.
MS. REID, I'M NOT QUITE DOCTOR YET.
QUESTIONS OR COMMENTS?
DEBRA?
THIS TYPE OF LOOKBACK IS BEING DONE IN JAPAN, WHERE THEY'RE ASKING THAT ALL THE PHARMOCO GENETICS ON THE MARKET BE DONE FOR THE JAPANESE POPULATION, WOULD YOU SUGGEST THAT THE FEDERAL GOVERNMENT ASK NOR THIS TYPE OF THING TO BE DONE IN ALL THE ETHNIC POPULATION, BECAUSE IT'S NOT JUST AFRICAN-AMERICANS BUT HISPANICS AND ALL THE DIFFERENT ETHNIC GROUPS, IN THE U.S., THAT WOULD BE A MAJOR EFFORT BECAUSE OF ALL -- BECAUSE WE ARE SO ETHNICLY DIVERSE.
I THINK IT'S, YOU KNOW, THE OLD EXPRESSION, HOW DO YOU ETAN ELEPHANT? ONE BITE AT A TIME. I WOULD THINK TO GO UP AGAINST THIS -- AS YOU SAY, STRAIGHT UP, WOULD BE A PROBLEM. ONE OF THE THINGS THAT I'M MAKING A RECOMMENDATION, I SIT ON A PANEL FOR HEART/LUNG PROBLEMS, ONE OF THE WAYS TO DO IT IS THIS, WHEN THE HOPKINS HAD A PROBLEM WITH THE LITERATURE SEARCH, AND NOW PEOPLE NOW DO REAL DEEP LITERATURE SEARCHES, BECAUSE NO ONE WANTS TO BE SHUTDOWN ANY MORE, SO MUCH OF A PROLIFERATION OF INFORMATION NOW UNTIL ONE OF THE THINGS I'M ASKING IS THAT WHEN YOU DO YOUR LITERATURE SEARCH, THAT YOU RUN OUT AS ONE OF YOUR KEY WORDS, THE ETHNIC GROUPS JUST TO GET THE INFORMATION BACK AND SEE 23 THERE'S ANYTHING OUT THERE. AND THEN YOU CAN INCORPORATE THAT INTO YOUR RESEARCH DESIGN, ET CETERA. BUT I DO THINK THAT THERE IS A RESPONSIBILITY FOR SOME OF THE OLDER DRUGS THAT HAVE BEEN OUT THERE. ONE ON THE NEW END TO PUT THE RESPONSIBILITY ON THE PHARMACEUTICAL MANUFACTURERS TO DO THAT KIND OF INCLUSIVE WORK, WHAT THEY SHOULD BE DOING ANYWAY, BUT TO ALSO, ON THE OLDER DRUGS TO BEGIN TO REVAMP AND TAKE A SLOW APPROACH, BUT STILL TAKE THE RESPONSIBILITY OF A LOOK BACK.
MAYBE THIS COULD COME THROUGH THE FDA WHAT SOME SORT OF TRUTH IN LABELING SUCH THAT FOR DIFFERENT MEDICATIONS IT HAS TO BE STATED WHAT ETHNIC POPULATIONS IT'S BEEN STUDIED IN SO THAT AT LEAST AS PART OF WHAT COMES WITH A DRUG, YOU KNOW THAT IT'S ONLY BEEN STUDIED IN CAUCASIANS OR CAUCASIANS AND AFRICAN-AMERICANS OR SOMETHING LIKE THAT SO THAT PHYSICIANS HAVE SOME ABILITY TO KNOW THAT ADVERSE REACTIONS, THEY MAY SEE ADVERSE REACTIONS IN OTHER POPULATIONS IN WHICH THE DRUG HAS NOT BEENESTED IT -- HAS NOT BEEN TESTED.
AND YOU'RE GETTING SOME OF THAT IN THE DTC.
WHAT YOU SAID, DRUG COMPANIES ARE VERY RELUCTANT TO DO THIS, WE'RE TRYING TO WORK THIS THEM ON EVEN THE NEWER DRUGS, TRYING TO GET THE VOLUNTARY.
IT'S ALL VOLUNTARY AT THIS POINT. I CAN SAY THERE WON'T BE ANY NEW DIAGNOSTIC TESTS USING GENOMICS THIS YEAR, SO IT'S SLOW.
OKAY.
AT LEAST IT'S ON THE TABLE FOR YOU TO EXAMINE.
THANK YOU AGAIN.
THANK YOU. I WOULD POINT OUT THAT AS WE THINK ABOUT DIFFERENT ETHNIC COMMUNITIES, WE NEED TO THINK IF GENDERS TOO, THAT'S BEEN A PROBLEM IN TESTING DRUGS AS WELL. THANK YOU VERY MUCH KATHLEEN FOR BRINGING THAT TO OUR ATTENTION. NEXT IS ANDY FOSSETT FROM THE AMERICAN BOARD OF GENETIC COUNSELING. ANDY?
I'M HERE TODAY AS A MEMBER OF THE BOARD OF DIRECTORS OF THE AMERICAN BOARD OF GENETIC COUNSELING, I'D LIKE TO BEGIN FOR THANKING THE COMMITTEE TO ALLOW US THE OPPORTUNITY TO PROVIDE THIS COMMENT. THE ABGC ESTABLISHES MINIMUM REQUIREMENTS FOR GRADUATE PROGRAMS IN GENETIC COUNSELING AND DEVELOPS A CRITERIA BY WHICH INDIVIDUALS BECOME ELIGIBLE TO SIT FOR THIS CERTIFICATION EXAMINATION. AGAIN ITICS ONE OF THE -- GENETICS IS ONE OF THE MOST RAPIDLY GROWING AREAS OF SCIENTIFIC RESEARCH. THE ADVANCES IN MEDICAL GENETICS ARE FORCING FUNDAMENTAL CHANGES IN THE WAY HEALTH CARE PROVIDERS THINK ABOUT HEALTH AND DISEASE. IT'S BECOMING INCREASINGLY ESSENTIAL FOR MANY HEALTH CARE PROFESSIONALS AND MUST BECOME AN INTEGRAL PART OF THEIR CURRICULUM. THE DRAFT RESOLUTION ON GENETICS, DEVELOPED BY THIS COMMITTEE CLEARLY RECOGNIZES ITS NEED AND MAKES SEVERAL SOLID RECOMMENDATIONS RELATED TO INTEGRATING GENOMIC CONCEPT NOOSE OUR HEALTH CARE SYSTEM. IT'S CRITICAL THAT A DISTINCT AND SEPARATE FOCUS ON THE EDUCATION AND TRAINING OF GENETICS HEALTH CARE PROFESSIONALS BE INCLUDED IN THIS RESOLUTION. AS CERTIFIED GENETICS PROFESSIONALS, WE RECOGNIZE THAT THE DEMAND FOR COUNSELING SERVICES WILL CONTINUE TO INCREASE, AND UNLESS MORE GENETIC COUNSELORS ARE TRAINED THERE WILL NOT BE ENOUGH COUNSELORS TO PROVIDE CARE TO ALL PATIENTS AND THEIR FAMILIES. MANY DEVOTE SIGNIFICANT TIME AND EFFORT EDUCATING OTHER HEALTH CARE PROVIDERS, THE PRIMARY OBJECTIVE IS TO TEACH THESE PROVIDERS TO RECOGNIZE A GENETIC CONDITION IN A PATIENT. HANDLE MORE STRAIGHTFORWARD GENETIC ISSUES AND DEVELOP A RELATIONSHIP WITH THE GENETICS PROFESSIONALS IN THEIR COMMUNITY AS A RESOURCE UPON WHICH THEY MAY DRAW TO PROVIDE OPTIMAL CARE TO THE PATIENT. THIS GOAL IS NOT TO TEACH OTHER HEALTH CARE PROFESSIONALS TO PROVIDE COMPREHENSIVE GENETIC SERVICES. THE ISSUES ARE FREQUENTLY COMPLEX AND AS A RESULT, A TEAM OF GENETICS PROFESSIONALS MAY BE REQUIRED TO PROVIDE THIS TYPE OF SERVICE. FOR EXAMPLE, THEY TAKE DIE DACK TICK COURSE WORK IN HUMAN, MEDICAL -- CULTURAL COMPETENCY, SOCIAL ETHICAL AND LEGAL ISSUES, HEALTH CARE DELIVERY SYSTEMS, PRINCIPLES OF PUBLIC HEALTH, TEACHING SKILLS AND METHODOLOGY. THEY'RE CREDITED BY THE AGC -- OVER 800 HOURS IN FIELDWORK AND RESEARCH. GENETIC COUNSELORS ARE TAUGHT TO PREPARE, DELIVER AND EVALUATE EDUCATIONAL PROGRAMS AS THEY APPLY TO VARIOUS GROUPS OF LEARNERS, THEY ARE SPECIFICALLY QUALIFIED TO DEAL WITH THE COMPLICATED GENETIC AND TECHNICAL ISSUES THAT ARISE IN THE CONTEXT OF GENETIC COUNSELING BUT ALSO THE PSYCHO SOCIAL AND LEGAL ISSUES WITH WHICH FAMILIES STRUGGLE. ADEQUATE FINANCIAL RESOURCES MUST BE IN PLACE SO THAT AROUND ADEQUATE NUMBER OF INDIVIDUALS CAN BE TRAINED. WHILE THE ABGC RECOGNIZES THAT -- IT MUST BE AIMED AT OUR ENTIRE HEALTH CARE SYSTEM, WE ENCOURAGE THIS COMMITTEE TO ACKNOWLEDGE THAT EQUALLY IMPORTANT IS IMPORTANT FOR THE CONTINUED EXISTENCE FOR HEALTH CARE PROFESSIONALS. GENETICS HEALTH CARE PROFESSIONALS HAVE BEEN AND WILL CONTINUE TO BE THE ONES WHO TRAIN AND EDUCATE OTHER HEALTH CARE PROFESSIONALS ABOUT THE MANY COMPLEXITIES OF GENOMIC MEDICINE. 77% ARE CURRENTLY INVOLVED IN THE GENETICS EDUCATION OF PHYSICIANS AND MEDICAL STUDENT AS CORDING TO A PROFESSIONAL STATUS SURVEY ADMINISTERED BY THE NATIONAL SOCIETY OF GENETIC COUNSELORS IN 2002. ONE THIRD REPORTED TEACHING GENETICS TO HEALTH CARE PROFESSIONALS, MANY HAVE DEVELOPMENTED AND IMPLEMENTED INNOVATIVE EDUCATIONAL MODELS. THEY'RE ALSO INVOLVED IN FORMING PUBLIC POLICY RELATED TO GENETICS AND ACTIVELY PARTICIPATE IN GENETICS EDUCATION PROGRAMS FOR THE PUBLIC. THE RECOMMENDATIONS MADE BY THIS COMMITTEE TO ENSURE THAT GENETICS EDUCATION AND TRAINING OF ALL HEALTH CARE PROFESSIONALS IS ADEQUATE WILL ONLY BE SUCCESSFUL IF THERE'S AN ADEQUATE GENETICS WORKFORCE TO IMPLEMENT THESE RECOMMENDATIONS AM. CURRENTLY THERE ARE 1,811 CERTIFIED GENETIC COUNSELORS AND 25 ACCREDITED PROGRAMS IN THE UNITED STATES AND 3 PROGRAMS IN CANADA. OF THOSE WHO RESPONDED TO THE PROFESSIONAL STATUS SURVEY REFERRED TO EARLIER, ONLY 6% INDICATED THEY WERE NONCAUCASIAN, IF GENOMIC MEDICINE IS GOING TO BE EQUALLY ACCESSIBLE AND PRACTICED IN A CULTURALLY SUCCESSIVE MANNER -- PROGRAMS MUST BE ESTABLISHED IN LESS POPULATED AREAS OF THE UNITED STATES. IN OCTOBER OF 2003, ROBIN BENNETT PAST PRESIDENT OF THE NSGC PRESENTED DATA TO THIS COMMITTEE RELATED TO REDUCING THE NUMBER AND DIVERSITY OF GENETIC COUNSELORS, MISS BENNETT RECOMMENDED THAT GRANTING AND FUNDING OPPORTUNITIES BE AVAILABLE TO STUDENTS IN CURRENT GENETIC COUNSELING PROGRAMS. THE ABGC STRONGLY SUPPORTS THE ALLOCATIONS OF FUNDS FOR THIS PURPOSE IF WE'RE GOING TO BE SUCCESSFUL IN INCREASING THE NUMBER AND DIVERSITY OF GENETIC COUNSELORS. GENETICS MUST REACH OUT TO OTHER HEALTH CARE PROFESSIONALS TO HELP THEM LEARN ABOUT THE GREAT PROMISE AND POTENTIAL PITFALLS OF GENOMIC MEDICINE. FOR THIS TO BE ACCOMPLISHED WE MUST ENSURE THAT ARE COMPETENTLY TRAINED GENETICS PROFESSIONALS. WE STRONGLY URGE THIS COMMITTEE TO MAKE SPECIFIC RECOMMENDATIONS TO SUPPORT THE CONTINUED TRAINING IN THE FIELD OF GENETIC COUNSELING, ENCOURAGE INYEESED DIVERSITY IN OUR PROFESSION. AND ENCOURAGE THOSE UNIQUELY TRAINED INDIVIDUALS THROUGH CERTIFICATION AND LICENSURE. THANK YOU.
THANK YOU, ANDY. QUESTIONS OR COMMENTS FOR MR. FOSSETT?
I THINK THIS IS AN EXCELLENT POINT. WE'VE OFTEN DISCUSSED IN THIS COMMITTEE THE POSSIBILITY OF GENETIC COUNSELORS AND SO I THINK THIS IS SORT 6 AN OVERSITE IN OUR EDUCATION RESOLUTION AND WE MAY WANT TO CONSIDER ADDRESSING THIS IN SOME WAY.
THANK YOU. ANY OTHER COMMENTS OR QUESTIONS. NEXT WE HAVE DR. BARBARA HAND DEMOCRAT LYNN FROM LANDLYNN ASSOCIATES.
THANK YOU, ZR McCABE, MEMBERS OF THE COMMITTEE FOR ALLOWING THIS ADDITIONAL OPPORTUNITY FOR ME TO PROVIDE SOME COMMENTS ON YOUR RESOLUTIONS AND RECOMMENDATIONS. LET ME JUST BEGIN BY SAYING THAT I'M HERE TODAY PRINCIPALLY REPRESENTING MYSELF AS A Ph.D. GENETICIST WHO'S BEEN A TECHNOLOGY DEVELOPER AND EARLY PRACTITIONER OF THE PROFESSION OF LABORATORY SERVICES. AS A CONSULT TONIGHT LARGE AND SMALL COMPANIES AND ACADEMIC CENTERS IN THE DEVELOPMENT OF NUB GENETIC TECHNOLOGIES AND THEIR IMPLEMENTATION AND PRACTICE. I ALSO SPEAK FROM SOME 15 YEARS OF WORKING WITH THE IRB COMMUNITY IN IMPROVING THE OVERSITE OF GENETICS RESEARCH INVOLVING HUMAN SUBJECTS. ESPECIALLY THOSE THAT ARE SPONSORED BY PRIVATE INDUSTRY. I WANTED TO FIRST -- THE FIRST ITEM, I'VE PROVIDED WRITTEN COMMENTS, I'M NOT GOING TO REREAD THOSE TO YOU HERE TODAY, BUT RATHER TO MOVE ON TO SOME ADDITIONAL THOUGHTS THAT I'VE HAD IN THE MEANTIME IN PARTICULAR INFLUENCED BY YOUR CONVERSATIONS THIS MORNING. I WANTED TO RESPOND TO THE QUESTION THAT BRAD RAISED EARLIER ABOUT WHAT MAY BE BROKEN OR IS THERE SOMETHING BROKEN IN THE PRACTICE OF MEDICINE TODAY WITH REGARDS TO GENETICS AND I HAD THE FOLLOWING THOUGHT. WHILE I'M ROUTINELY AMAZED AT GENETICS -- I ALSO HAVE TO ADMIT THAT I HAVE AN EQUAL NUMBER OF STORIES OF PEOPLE WHO SPENT YEARS OF SUFFERING AND EXPENSE, FAILING TO GET A CORRECT DIAGNOSE IGS EVEN WHEN GENETICS IS NOT INVOLVED. AND I KNOW THAT ALL OF US DO. I THINK THIS IS A REFLECTION OF THE WAY WE ARE, PERHAPS NOT TEACHING PHYSICIANS TO THINK ABOUT A CONSOLEATION OF SYMPTOMS, ABOUT HOW TO ASK ENOUGH QUESTIONS AND HEAR ENOUGH ANSWERS ABOUT A PATIENT'S CONDITION. MOST IMPORTANTLY ABOUT HOW TO THINK THROUGH A COMPLEX PROBLEM, CONSIDERING MANY ALTERNATIVE DIAGNOSES. AS WELL, AS THE PHYSICIAN BEING ABLE TO THINK ABOUT WHAT'S ALL THE DATA THAT I'M GOING TO NEED TO COLLECT IN ORDER TO WEAVE AMONGST THOSE POSSIBLE ALTERNATIVES, AND I WOULD ALSO SAY WE HAVE FAR EXCEEDED THE CAPACITY OF THE MAJORITY OF PHYSICIANS TO KEEP A REASONABLY COMPLETE FUND OF KNOWLEDGE OF HUMAN DISEASE IN MIND AS THEY'RE SEEING PATIENTS, GENETICS OR NO IN THIS VEIN, I WOULD STRONGLY SUPPORT THE IDEA THAT AROSE EARLIER TODAY, I THINK ORIGINALLY BY DR. TECH SON ABOUT THE TIMELINESS OF PROMOTING THE DEVELOPMENT AND IMPLEMENTATION OF INFORMATION TECHNOLOGY SYSTEMS THAT CAN SUPPORT ROUTINE CLINICAL PRACTICE, INCLUDING THE SUGGESTION OF GENETIC ETIOLOGIES OR CONTRIBUTIONS TO COMMON DISEASE IN EVERY DAY PRACTICE TIS. BUT I MAKE THIS SUGGESTION WITH A CAUTION, THAT BEING THAT THIS SORT OF PRACTICE TOOL HAS BEEN DEVELOPED PREVIOUSLY, HAVE BEEN DEVELOPED PREVIOUSLY AND MARKETED BY PRIVATE COMPANIES, ONLY TO BE REJECTED BY MANY PHYSICIANS BECAUSE THEY DON'T WANT TO APPEAR -- THEY DON'T LIKE THE FEELING THAT A COMPUTER MAY APPEAR TO BE DOING MY JOB. THAT KIND OF SENSE OF PRIDE IN PROVIDING KNOWLEDGE AND EXPERIENCE IS A BARRIER TO THE ACCEPTANCE FOR SUCH TOOLS, AND IT CAUSES ME TO WONDER IF, PERHAPS WE NEED TO SEE SOME KIND OF REQUIREMENT FOR SUCH TOOLS IN LARGE MEDICAL PRACTICES IN LARGE INSTITUTIONS OR THE REQUIREMENT FOR SUCH TOOLS TO BE INCORPORATED INTO NEW TRAINING PROGRAMS. AND THEN I'D ALSO LIKE TO SPEAK TO SEVERAL OTHER POINTS THAT WERE CONTAINED IN THE VARIOUS BRIEF THAT THE COMMITTEE PROVIDED AS BACKGROUND. IN PARTICULAR, I'D LIKE TO SPEAK TO THE BRIEF ON LARGE POPULATION STUDIS. GENETICS IS THE DISCIPLINE I LEARNED WHEN I WAS A Ph.D. STUDENT IS NOT THE STUDY OF INHERITED TRAITS, NOR THE STUDY OF INHERITANCE ITSELF. BUT RATHER MORE FUNDAMENTALLY THE STUDY OF VARIABILITY. VARIABILITY IN POPULATION IS SOURCED THROUGH INBORN TRAITS OF THE SPECIES. VARIABILITY IN POPULATIONS IS IS THE STOURS OF OUR BIOCHEMICAL PATTERNS, OUR PHYSIOLOGY, OUR RESPONSE TO INFECTIOUS DISEASE TO NUTRITION, TO EXPOSURE TO XENO BIOLOGICALS TO DAILY LIFE STRESS AND TO ADMINISTER TREATMENT AS IN THE CASE OF PHARMACOGENETICS. WE SHARE SPECIFIC VARIANCE WITH FAMILY MEMBERS AND CHOOSE PARENTS -- PARENTING PARTNERS. VARIABILITY ALLOWS US TO BE A PART OF A GROUP OR SECTOR AND TO BE INDIVIDUALS. I WOULD PAUSE IT TO THE COMMITTEE THAT THE BASIC GOALS OF OUR PURSUIT OF KNOWLEDGE ABOUT THE HUMAN GENE OM IS FUNDAMENTALLY ABOUT UNDERSTANDING THE VARIABILITY IN POPULATION. AND, THEREFORE, ENSURING THE POTENTIAL TO UNDERTAKE SUCH LARGE POPULATION STUDIES ALL ACROSS THE UNITED STATES THROUGH THE VARIOUS STRATA OF OUR DIVERSE POPULATION SEEMS TO ME TO BE AMONG THE MOST IMPORTANT MISSION OF ALL PERSONS AND COMMITTEES WHO ARE CHARGED WITH OVERSEEING THE EXPLORATION AND APPLICATION OF GENETIC TECHNOLOGIES AND RESEARCH AND MEDICINE. SO I HOPE THAT YOU MIGHT -- YOU HEAR AND THOSE AT THE NIH AND NHG, GRI WILL FOCUS ON FINDING WAYS TO LIST THE MAIN BARRIERS TO THE ETHICAL AND PRODUCTIVE CONDUCT OF LARGE STUDIES. I AGREE WHOLEHEARTEDLY WITH THE OBSERVATION MADE IN THE COMMITTEE BRIEF THAT THE LACK OF THE UNIVERSAL HEALTH CARE SYSTEM AND THE LACK OF A UNIFORMED ELECTRONIC MEDICAL RECORDS SYSTEM HERE IN THE U.S. ARE LIKELY TWO VERY IMPORTANT BARRIERS TODAY. THE SIMPLE PROMISE OF GUARANTEED HEALTH INSURANCE AND HEALTH COVERAGE AS ARE SEEN IN OTHER COUNTRIES IN THE WORLD SUCH AS SWEDEN AND ICELAND ARE -- GO A LONG WAY TO ENCOURAGING PEOPLE TO PARTICIPATE IN SUCH LARGE RESEARCH PROTOCOLS. OTHER SAFETY CONCERNS ARE SUBJECTS ABOUT PRIVACY AND CONFIDENTIALITY. AND I WOULD SUGGEST THAT IT'S BEEN MY CONCLUSION THAT WE CANNOT EVER GUARANTEE ABSOLUTE PRIVACY OR THAT WE COULD HOLD ALL INDIVIDUAL DETAILS COMPLETELY CONFIDENT. AND, THEREFORE, IT SEEMS PARAMOUNT TO ME THAT WE -- THAT WE MUST FEEL CONFIDENT THAT THOSE WHO MAY CHOOSE TO ATTEMPT TO HARM US THROUGH THE USE OF OUR PRIVATE INFORMATION WILL NOT BE TOLERATED. THAT THERE WILL BE SEVERE CONSEQUENCES FOR SUCH ABUSE OF PRIVACY. I HAVE AN UNCLE WHO'S AN ATTORNEY WHO USED TO SAY THAT NO ONE WOULD CHEAT ON THEIR TAXES IF THE DEATH PENALTY WERE THE REQUIRED SENTENCE. TO BE CLEAR, WHILE PROVIDING CLEAR REQUIREMENTS FOR UTILIZING ALL THE AVAILABLE METHODS FOR SHIELDING PRIVATE INFORMATION FROM WRONGFUL USE, I BELIEVE IT'S EQUALLY IMPORTANT TO DEVELOP A SYSTEM OF CLEAR CONSEQUENCES FOR SUCH WRONGFUL ACTS TO SEND A MESSAGE THAT AS A SOCIETY WE WILL NOT TOLERATE SUCH VIOLATIONS OF RESPECT FOR PERSONS. IN CONCLUSION, I JUST WANT TO SAY THAT I'M USING THIS LANGUAGE OF RESPECT FOR PERSONS WHICH I TAKE FROM THE BELMONT REPORT ONE OF THE THREE AGAIN PRINCIPLES LAID OUT BY THE BELMONT COMMITTEE AND THE PROTECTION FOR RESEARCH SUBJECTS AS A WAY TO REMIND YOURSELVES AGAIN THAT THE REASON THAT WE HAVE RULES AND REGULATIONS ABOUT THE ETHICAL USE OF HUMAN SUBJECT AS RISES FROM THE MISUSE OF GENETIC AND OTHER COUNTS -- KINDS OF INFORMATION HERE IN THE UNITED STATES AND IN DETERMINE ANNIE DECADES AGO, SO I URGE US TO RETURN TO THOSE SIMPLE PRINCIPLES, RESPECT FOR PERSONS, AND JUSTICE AS YOU CONTINUE IN YOUR IMPORTANT WORK HERE. THE FINAL POINT THAT I WOULD LIKE TO TAKE JUST A MINUTE TO MAKE IS THAT -- TO APPLAUD YOU ON YOUR THOROUGH AND THOUGHTFUL TREATMENT ON THE REIMBURSEMENT AND COVERAGE ISSUES FOR NEW TECHNOLOGIES INCLUDING THOSE IN GENETICS, SINCE THE FIRST APPLICATION OF OUR KNOWLEDGE OF GENES AND PERFORMING CARRIER TESTS, WE HAVE BEEN PRACTICING A NEW KIND OF PREVENTIVE MEDICINE. I SUGGEST THAT TODAY OUR NEAREST BENEFIT FROM THE GENOME KNOWLEDGE BASE REMAINS PRIMARILY PREVENTIVE MEDICINE AS WE SEE THE VERY FIRST OF NEW CANCER SCREENING TESTS, FIRST TESTS TO IDENTIFY PATIENTS WHO WILL OR WILL NOT BENEFIT FROM TOO MUCHIC CHEMOTHERAPIES, THESE ARE THE KINDS OF NEW PRODUCTS THAT I THINK ARE GOING TO TYPIFY THE IMPLEMENTATION OF GENETICS IN THE NEXT DECADE, AND, THEREFORE, I ESPECIALLY ENCOURAGE YOU TO DRIVE HOME THE IMPORTANCE OF DRIVING HOME A CHANGE FOR PREVENTIVE MEDICAL SERVICES SO WE COULD ENCOURAGE THE PARTICIPATION IN THE RESEARCH NECESSARY TO GET THERE AS WELL AS IN THE ENJOYMENT OF THOSE BENEFITS. THANK YOU VERY MUCH.
THANK YOU, DR. HANDLYNN. ANY QUESTIONS OR COMMENTS, ANYONE? THANK YOU VERY MUCH.
I JUST HAD A QUESTION, HOW MUCH DO YOU THINK OF THE REASON THAT GENETICS ISN'T CONSIDERED IS BECAUSE PHYSICIANS IN THEIR TIME CONSTRAINED BY THE CLOCK OFFICE VISITS ARE BASICALLY APPLYING THE 80-20 RULE, YOU KNOW, WHERE YOU TAKE THE MOST COMMON DIAGNOSES AND SORT OF FARM EVERYBODY THROUGH THOSE AND JUST DON'T REALLY HAVE THE TIME TO CONSIDER THE LESS LIKELY SCENARIOS OR THE MORE INFREQUENT SCENARIOS.
WELL, I GUESS I WOULD QUESTION WHETHER GENETIC ETIOLOGIES OR GENETIC COMPONENTS OF MANY COMMON DISEASES ARE TYPICALLY THE UNCOMMON EXPLANATIONS FOR MANY PRESENTING SYMPTOMS, BUT I AGREE WITH YOU THAT CERTAINLY A RELUCTANCE TO CONSIDER MANY OTHER ALTERNATIVE DIAGNOSES CLEARLY FALLS PRINCIPALLY FROM A LACK OF TIME AS WELL AS A LACK OF TIME -- RIGHT THERE IN THE OFFICE, AS WELL AS A LACK OF TIME TO INCORPORATE NEW IDEAS, NEW CONCEPTS, NEW KNOWLEDGE INTO YOUR FUND OF KNOWLEDGE. AGAIN, I THINK THAT POINTING TO THE NEED FOR SOME ASSISTANCE IN DOING THAT.
ANY OTHER QUESTIONS OR COMMENTS? THANK YOU, DR. HANDLYNN. WITH THE WAY WE WILL PROCEED NOW IS WE'RE GOING TO HAVE CINDY BARRY GIVE HER PRESENTATION AND THEN WE'LL TAKE A BREAK BEFORE THE DISCUSSION OF COVERAGE AND REIMBURSEMENT. AT THE MARCH MEETING THE COMMITTEE DECIDED THAT THIS TOPIC WOULD BE THE SUBJECT OF ITS FIRST MAJOR REPORT. A DRAFT REPORT WAS PREPARED BY STAFF AND CAN BE FOUND AT TAB 5 OF YOUR BRIEFING BOOK. I'D LIKE TO TAKE THIS OPPORTUNITY TO THANK CINDY BARRY FOR HER LEADERSHIP ON THIS ISSUE AND SUZANNE GOOD WIN AND AMANDA FOR PREPARING THE DRAFT REPORT. I THINK THEY'VE DONE A REMARKABLE JOB IN A VERY SHORT AMOUNT OF TIME. I THINK WE SHOULD ACKNOWLEDGE, HOWEVER THAT THIS IS A DRAFT AND NEITHER CINDY NOR THE STAFF HAVE GIVEN IT ANY FINAL BLESSING. ALSO AS I INDICATED BEFORE, I DOUBT THAT WELL COMPLETE THE DISCUSSION OF THIS TOPIC HERE, BUT THAT IT WILL PROCEED INTO THE NEXT MEETING. AND SO NOW AT THIS TIME, CINDY IS GOING TO GIVE US AN OVERVIEW OF THE SCOPE AND CONTENT OF THE ISSUES COVERED. CINDY?
THANK YOU. IN THE INTEREST OF TIME, I'M NOT GOING TO GO INTO ENORMOUS DETAIL INTO EACH OF THE TOPICS THAT ARE COVERED IN THE REPORT, BUT RATHER GIVE A GENERAL OVERVIEW OF HOW THE REPORT IS STRUCTURED. MANY OF YOU, REID IN PARTICULAR HAVE LOOKED AT THIS IN GREAT DETAIL AND HAVE PROVIDED SOME COMMENTS, AND THIS AFTERNOON'S EFFORTS ARE GOING TO BE FOCUSED ON REILLY TAKE -- REALLY TAKING A GOOD HARD LOOK AT THE REPORT. AT THIS POINT I'M NOT GOING TO GO OVER SPECIFIC LANGUAGE, WE'RE ALL GOING TOO HAVE COMPREHENSIVE EDITS, THINGS THAT ARE OVERLOOKED. AND THERE ARE THINGS THAT MAY NOT BE ADDRESSED ADEQUATELY AND WE'LL NEED TO FLUSH THEM OUT IN GREATER DETAIL. I'LL JUST GIVE YOU A FEELING FOR HOW THIS REPORT IS STRUCTURED AND THEN WE CAN PROCEED TO THE DISCUSSION PHASE OR GET INTO SOME OF THE DETAILS, AS YOU MAY REMEMBER FROM THE LAST MEETING WE DID HAVE A PRETTY ELABORATE PRIORITY SETTING PROCESS, AND OUT OF THAT PROCESS CAME COVERAGE AND REIMBURSEMENT AS ONE OF THE PRIORITY ISSUES THAT THIS COMMITTEE SHOULD LOOK INTO. COVERAGE AND REIMBURSEMENT BEING ONE OF THE KEY BARRIERS TO ACCESS THE GENETIC TECHNOLOGIS. THE PURPOSE AND GOALS OF THE REPORT REALLY ARE TO GIVE AN OVERVIEW OF THE CURRENT STATE OF PLAY. WHAT'S GOING ON RIGHT NOW IN THE AREA OF COVERAGE AND REIMBURSEMENT FOR GENETIC TECHNOLOGIES AND SERVICES AND HOW CAN WE IMPROVE THAT? THE SECTIONS OF THE REPORT ARE AS FOLLOWS, WE HAVE AN INTRODUCTORY SESSION, OF COURSE. WHAT ARE WE TALKING ABOUT WHEN WE TALK ABOUT GENETIC TECHNOLOGIES? AND REID HAS BROUGHT THIS UP IN THE PAST, AND I THINK WE MAY NEED TO DO A LITTLE MORE WORK THERE AS -- LET'S DEFINE THIS. WHAT IS THE SCOPE OF GENETIC TECHNOLOGIES AND SERVICES THAT WE'RE TALKING ABOUT. GENERAL PRINCIPLES, THEN IN THE BACKGROUND SECTION THE REPORT DELVES INTO HOW ARE COVERAGE DECISIONS MADE IN FEDERAL HEALTH CARE PROGRAMS AND IN THE PRIVATE SECTOR, HOW ARE SERVICES AND TECHNOLOGIES BEING REIMBURSED. WHAT'S THE BILLING PROCESS, AND THEN AFTER THAT GENERAL OVERVIEW, THE REPORT DELVES INTO THE BARRIERS TO COVERAGE EVEN REIMBURSEMENT. AND, OF COURSE, THE RECOMMENDATIONS SECTION IS SOMETHING FOR THIS COMMITTEE TO COME UP WITH. BASICALLY THE INTRODUCTION SETS OUT WHAT THE PROBLEM IS THAT GENETIC TECHNOLOGIES CAN HELP ENHANCE CLINICAL CARE AND IMPROVE OUTCOMES BUT THERE ARE LIMITATIONS IN TERMS OF WHAT'S COVERED AND REIMBURSED AND THOSE ARE BARRIERS. THIS SECTION INTO GENETIC TECHNOLOGY GOES INTO WHAT ARE WE TALKING ABOUT? WHEN WE TALK ABOUT GENETIC TECHNOLOGIES AND SERVICES AND WHAT DISTINGUISHES THEM FROM OTHER HEALTH CARE SERVICES AND TECHNOLOGIES. THE GENERAL PRINCIPLES SECTION REALLY HAS SORT OF AN OUTLINE OF SOME THINGS THAT WE HAVE DISCUSSES IN THIS COMMITTEE IN THE PAST, AND THAT UNDOUBTEDLY WE WILL DELVE INTO IN THE FUTURE. IT'S NOT A COMPREHENSIVE LIST, AS WE GO THROUGH THE DISCUSSION THIS AFTERNOON, I THINK FOLKS WILL COME UP WITH ADDITIONAL PRINCIPLES THAT PROBABLY NEED TO BE INCORPORATED IN THIS REPORT. AND AS I MENTIONED THIS IS THE GENERAL OVERVIEW OF OUR U.S. HEALTH CARE SYSTEM, THE DIFFERENT FEDERAL PROGRAMS, THE PRIVATE SECTOR PROGRAMS, MANAGED CARE, AND THEN THE ISSUE OF THE UNINSURED AND UNDERINSURED. THE SECTION ON COVERAGE DECISIONS REVIEWS HOW MEDICARE MAKES COVERAGE DETERMINATIONS AND THEN IT GOES INTO THE PRIVATE SECTOR DETERMINE NAIGSS WHICH REALLY ARE VARIED. EVERY HEALTH PLAN IS DIFFERENT, EVERY HEALTH PLAN HAS DIFFERENT GUIDE LANES -- GUIDELINES AND THE RESULTS AND OUTCOMES ARE DIFFERENT. THE SITUATION IS REALLY THE SAME IN TERMS OF PAYMENTS, IN MEDICARE, YOU DO HAVE A SYSTEM FOR DETERMINING WHAT IS IT IS REIMBURSED AND THE REPORT DOES GO INTO WHAT THE CURRENT PAYMENT REY RATE FOR GENETIC TECHNOLOGIES AND SERVICES ARE, AND WE'LL UNDOUBTEDLY HAVE A DISCUSSION ABOUT WHETHER THOSE ARE SUFFICIENT. I SUSPECT BASED ON PREVIOUS TESTIMONY AND COMMENT THAT IS WE'VE HEARD THAT THE PAYMENT IS NOT SUFFICIENT FOR MANY OF THESE SERVICES. THE REPORT ALSO GOES INTO BILLING PROCESSES AND WHO IS ENTITLED TO BILL FOR GENETICS SERVICES AND TECHNOLOGIESES.
AND THEN FINALLY, BUT THE NEXT STEP, OF COURSE, IS TO EXAMINE THE SPECIFIC BARRIERS, BARRIERS THAT ARE PARTICULAR TO THE MEDICARE PROGRAM, BARRIERS TO ACCESS THAT ARE PARTICULAR TO MEDICATE -- MEDICAID AND STATE PROGRAMS, AND THEN, OF COURSE, THERE ARE BARRIERS THAT ARE APPLICABLE TO ALL INSURERS WHETHER THEY ARE IN THE PUBLIC SECTOR OR THE PRIVATE SECTOR. WE'LL JUST RUN THROUGH A COUPLE OF THESE QUICKLY. THE SCREENING EXCLUSION IS ONE OF THE BARRIERS THAT THE REPORT IDENTIFIES, IF THERE ARE NO SIGNS, SYMPTOMS, COMPLAINTS OF PERSONAL HISTORY OF A DISEASE AND THERE'S NOT AN INJURY, IT'S GOING TO BE DIFFICULT IF NOT IMABLE -- IMPOSSIBLE FOR MEDICARE TO PAY FOR SCREENING TESTS, THAT IS BASED ON THE MEDICARE LAW ITSELF. IT'S NOT SOMETHING YOU CAN FAULT DMS FOR. IT'S A CHANGE IN STATUTE WARRANTED? THE REPORT GOES INTO DETAIL ABOUT LOCAL MEDICAL REVIEW POLICIES AND NATIONAL COVERAGE DECISIONS, HOW THERE'S SORT OF A TENSION IN SOME RESPECTS BETWEEN LOCAL DECISIONS AS TO WHAT'S COVERED AND THEN A NATIONAL COVERAGE DECISION. HOW DO THOSE INTERREACT AND HOW DO THEY AFFECT GENETICS SERVICES AND TECHNOLOGIES? GENETIC COUNSELERS? ARE THEY ABLE TO SUBMIT BILLS TO MEDICARE FOR THEIR SERVICES AND THE ANSWER IS NO ACCORDING TO THE STATUTE. THERE ARE ISSUES WITH REGARD TO PRIVATE HEALTH PLANS UNDOUBTEDLY AS WELL. MEDICARE IS A NATIONAL LEADER IN HEALTH CARE OF -- THIS IS AN INTERESTING POINT BECAUSE IN MANY, MANY CASES WE SEE THAT MEDICARE REALLY SETS THE STAGE AND SERVES AS A GUIDE FOR OTHER INSURERS, IF MEDICARE COVERS SOMETHING OR DOESN'T COVER SOMETHING, OFTEN THAT IS REPLICATED IN THE PRIVATE SECTOR. BUT NOT ALWAYS, MY PERSONAL EXPERIENCE AND OTHERS WILL HAVE EXPERIENCE HERE AS WELL. WHEN IT COMES TO PREVENTIVE SERVICES, OFTEN TIMES WE SEE THE PRIVATE SECTOR TAKING A MORE PROACTIVE ROLL, SIMPLY BECAUSE THE MEDICARE PROGRAM IS BOUND BY STATUTES, CONGRESS DOESN'T MOVE TOO QUICKLY, AND IT'S VERY DIFFICULT FOR A LEGISLATIVE BODY TO KEEP UP WITH ADVANCES IN HEALTH CARE, IN THIS CASE, SOMETIMES THE PRIVATE SECRETARIER IS ABLE TO MOVE MORE QUICKLY, AND SO THIS WILL BE A DISCUSSION IN THE REPORT THAT EXPLAINS WHY THE MEDICARE PROGRAM IS SO IMPORTANT, NOT ONLY FOR THE MEDICARE BENEFICIARIES BUT AS A MODEL FOR OTHER INSURERS, CONVERSELY, MAYBE THERE ARE LESSONS WE CAN LEARN FROM THE PRIVATE SECTOR IN TERMS OF THEIR ABILITY TO INCORPORATE SOME OF THESE TECHNOLOGIES IN HEALTH CARE. THE REPORT GOES INTO STATE PROGRAMS AND THEN WE HAVE BARRIERS THAT ARE APPLICABLE TO ALL INSURERS AND ALL HEALTH CARE PROGRAMS, MEDICAL NECESSITY CRITERIA, AND, OF COURSE, ONE OF THE UNDERLYING ISSUES, THRESHOLD ISSUES THAT WILL UNDOUBTEDLY DISCUSSION IN COMMENTS TODAY HAS TO DO WITH THE INFORMATIONAL VALUE OF GENETICS TESTS AND GENETIC TEST RESULTS. IF IT'S JUST GREAT FOR SOMEONE TO KNOW THE RESULTS OF THE TEST, DOES THAT WARRANT COVERAGE UNDER A FEDERAL HEALTH PLAN OR A PRIVATE HEALTH PLAN. THERE IS THE ISSUE OF THE FUTURE BENEFIT. TESTING SOMEONE FOR A GENETIC DISORDER, IF THERE IS NO TREATMENT AVAILABLE RIGHT NOW, IS THAT AGAIN INFORMATIONAL BENEFIT, AND ALSO IF SOMEONE IS NOT EXPERIENCING ANY SIGNS OR SYMPTOMS, IF YOU TEST NOW, THAT WILL PRODUCE SOME BENEFIT AT SOME POINT IN THE FUTURE. IS THAT A BARRIER TO COVERAGE WHETHER IT'S IN THE FEDERAL HEALTH PROGRAMS MEDICARE OR WHETHER IT'S IN THE PRIVATE SECTOR? AND, OF COURSE, THE ROLL OF COSTS AND COVERAGE DECISION, IT'S NOT EXPLICITLY CONSIDERED, BUT UNDOUBTEDLY IT'S A FACTOR AND WE'LL HAVE TO BE MINDFUL OF THAT. EXPERIMENTAL EXCLUSIONS, SOME OF THESE TECHNOLOGIES FALL UNDER THAT CATEGORY, THAT'S ANOTHER BARRIER TO COVERAGE AND REIMBURSEMENT. CPT CODE MODIFIERS, IT OUTLINES THE PROCESS FOR GETTING A CPT CODE AND WHAT THAT MEANS FOR COVERAGE AND REIMBURSEMENT AND FOR PAYMENT. THERE ARE NO CPT CODES SPECIFIC TO GENETIC COUNSELING AND THAT COULD BE A BARRIER AS WELL. EVIDENCE BASED COVERAGE DECISIONS WE TALKED ABOUT THAT THIS MORNING, AND IT'S A RECURRENT THEME IN OUR COMMENTS TODAY. [ BRIEF PAUSE IN CAPTIONING FOR CHANGE OF CAPTIONER ] PROBABLY SHOULD CLOSE WITH THE DISCUSSION OF THIS TOPIC FOR THE AFTERNOON. THE OVERALL DISCUSSION OF THE CONTENT, THE TONE OF THE REPORT. THEN WE HAVE TO COME ONE SOME RECOMMENDATIONS. I'LL BRING UP A POINT IN ONE SESSION OF THE REPORT IF YOU HAVE READ IT THERE ARE SOME BOXES ON POLICY OPTIONS. MY VIEW MIGHT BE A LITTLE BIT CONFUSING TO HAVE POLICY OPTIONS THERE AND THEN HAVE RECOMMENDATIONS SOME PLACE ELSE. WE MIGHT WANT TO FIGURE OUT HOW WE WANT TO STRUCTURE THAT. I DON'T KNOW IF OTHERS AGREE OR DISAGREE. THIS COMMITTEE IS TO FINALIZE THE REPORT, MAKE SURE THAT WE'VE CAPTURED ALL OF THE BASICS AND THE LANGUAGE IS SOMETHING THAT WE ALL FEEL COMFORTABLE WITH. BUT REALLY HONE IN ON SOME OF THE RECOMMENDATIONS, CONCRETE RECOMMENDATIONS THAT THIS REPORT CAN MAKE TO IMPROVE COVERAGE AND REIMBURSEMENT FOR GENETIC TECHNOLOGIES. THEREBY IMPROVING ACCESS TO THESE SERVICES. HERE ARE SOME OF THE TOPICS, AND I'LL LEAVE THIS SLIDE UP FOR OUR DISCUSSION. THESE ARE TOPICS THE STAFF HAS IDENTIFIED THAT WE COULD GO INTO ALL OF THEM, SOME OF THEM, A FEW OF THEM. IT WOULD BE IMPORTANT TO GET THE THOUGHTS FROM THE FOLKS ON THE COMMITTEE AS TO PRIORITIES, ISSUES THAT YOU WANT TO FOCUS ON AND THAT YOU THINK SHOULD BE THE BASIS OF OUR DISCUSSION TODAY FOR PURPOSES OF PUTING TOGETHER SOME CONCRETE RECOMMENDATIONS FOR THE LAST PART OF THE REPORT.
THANK YOU, CINDY. I THINK WITH THAT WHY DON'T WE TAKE A 15-MINUTE BREAK. AGAIN WE HAVE THE REFRESHMENTS UP HERE FOR FOR THE EX-OFFICIOS AND MEMBERS OF THIS THE COMMITTEE. WE'LL REASSEMBLE HERE IN 15 MINUTES. SO AROUND A QUARTER AFTER. TEST TEST
DR. REEDE, ARE YOU THERE?
YES I AM.
ARE YOU THERE, REEDE?
OKAY LET'S BEGIN AGAIN PLEASE. ABBY, COULD YOU SCARE PEOPLE IN FROM THE HALLWAY PLEASE? I'D LIKE TO REMEMBER -- I'D LIKE TO REMIND EVERYONE THAT OUR GOALS FOR THE NEXT ROUGHLY TWO HOURS ARE TO DISCUSS THE DRAFT AND DEVELOPMENT RECOMMENDATIONS TO BE INCLUDED IN THIS REPORT TO THE SECRETARY. AGAIN, I DOUBT WE WILL FINALIZE THIS OVER THE NEXT TWO HOURS. WE HAVE WRITTEN PUBLIC COMMENTS AND HAVE HEARD PUBLIC TESTIMONY REGARDING THE REPORT. CINDY HAS IDENTIFIED SOME AREAS WHERE WE MIGHT WANT TO FOCUS OUR ATTENTION. AND SO I WILL TURN IT OVER TO YOU NOW, CINDY, TO LEAD OUR DISCUSSION FOR THE NEXT TWO HOURS. OUR PLAN IS TO FINISH UP HERE AT 5:30 TONIGHT. IN CASE I FORGET LET ME REMIND EVERYONE THAT WE ARE STARTING EARLIER TOMORROW. WE WILL START AT 8:00 TOMORROW MORNING. THANK YOU.
BASED ON THE AMOUNT OF TIME IT TOOK US TO GO OVER THE EDUCATION AND TRAINING RESOLUTION IT SEEMS LIKE AND HERE'S JUST A DISCUSSION BUT RET ME KNOW IF ANYONE DISAGREES. FOR SPECIFIC EDITS BECAUSE THE REPORT IS SO EXTENSIVE THAT PERHAPS WE SHOULD GIVE A DEADLINE TO OUR -- OURSELVES TO HAND WRITE OR E-MAIL SPECIFIC WORDING CHANGES AND THINGS LIKE THAT AND GET THEM TO STAFF TO SUZANNE? I DON'T KNOW WHAT DEADLINE YOU WANT TO PUT ON THERE. AND FOCUS OUR DISCUSSION TODAY MORE ON BIGGER PICTURE. YOU KNOW, THE STRUCTURE OF THIS IS WRONG OR WE NEED TO ADD A SECTION ON SUCH AND SUCH OR HERE ARE WHAT OUR RECOMMENDATIONS SHOULD BE. THAT KIND OF THING. I DON'T WANT TO UNILATERALLY IMPOSE THAT SO TELL ME IF YOU DISAGREE BUT SEEMS LIKE THAT MIGHT BE A MORE EFFICIENT WAY TO DEAL WITH THIS TODAY.
OUR NEXT MEETING IS OCTOBER 18-19. WE WANT TO HAVE TIME TO GET THOSE WELL INCORPORATED. TIME, CINDY, AND SUZANNE? A MONTH, SIX WEEKS BEFORE THAT? SIX WEEKS?
WHERE DOES THAT TAKE US?
IF IT WAS SIX WEEKS THAT WOULD BE THE BEGINNING OF SEPTEMBER . TO GET IN FEEDBACK ON THE DOCUMENT. EVEN SOONER THAN THAT. OKAY MID-AUGUST ? DO I HEAR MID-AUGUST ? EVEN EARLIER? STAFF IS MUCH MORE REASONABLE ABOUT TIME THAN I AM. SO EARLY AUGUST , MID-JULY ?
MID-JULY OR EVEN EARLY JULY DEPENDING ON HOW EXTENSIVE THE EDITING PROCESS NEEDS TO BE. PART OF THAT RELATES TO WHETHER OR IF WE PLAN TO GO OUT FOR PUBLIC COMMENTS IN TIME FOR THE OCTOBER MEETING SO THERE WILL HAVE TO BE SIGNIFICANT TIME TO PREPARE FEDERAL REGISTER NOTICE FOR PUBLIC COMMENT AND TO GIVE THE PUBLIC SUFFICIENT TIME TO RESPOND BUT ALSO IN THE MAKE SURE THAT WE PUBLISH OR HAVE AVAILABLE REVISED DRAFT BASED ON YOUR EDITS AND TODAY'S DISCUSSION.
HOW ABOUT THURSDAY? [LAUGHTER]
IF WE WANT TO HAVE TIME -- IF WE GIVE PEOPLE A MONTH THAT WOULD BE ROUGHLY THE 16th OF JULY . IF WE WANT TO DO IT EVEN EARLIER THAN THAT, WE COULD GO FOR THE 1st OF JULY , WHICH IS A THURSDAY AS PER PAUL MILLER. OKAY SO JULY 1. SO TWO WEEKS WOULD BE JULY 1. WOULD THAT WORK FOR STAFF?
THAT'S GOOD. THANK YOU.
AOK SO JULY 1 IT IS.
THOSE OF US WHO ARE REPRESENTING OTHER PEOPLE, ARE THOSE PEOPLE THAT WE'RE REPRESENTING DO THEY GET AN ELECTRONIC VERSION OF THIS?
THERE IS A COPY AVAILABLE PDF COPY ON OUR WEBSITE AND THERE'S ALSO ONE THAT WAS SENT ELECTRONICALLY TO YOU BEFORE THE MEETING BUT WE CAN CERTAINLY SEND IT OUT AGAIN AFTER THE MEETING TO MAKE SURE YOU HAVE AN ELECTRONIC COPY.
EMILY?
I WAS GOING TO SUGGEST THAT PERHAPS WHAT WE SHOULD DO IS RATHER THAN FOCUSING AS YOU MENTION ON EDITS ON SORT OF THE BACKGROUND INFORMATION WHERE I THINK WE'VE GOTTEN SOME COMMENTS IN THAT SOME OF THE BACKGROUND INFORMATION NEEDS UPDATE. BUT I THINK IT'S VERY IMPORTANT FOR US TO DISCUSS THE POLICY RECOMMENDATIONS AND I CERTAINLY WOULD LIKE TO SEE BECAUSE THIS IS GOING TO BE A TOPIC THAT I THINK ALREADY HAS EVOKED A LOT OF PUBLIC COMMENT AND IS LIKELY TO EVOKE MORE PUBLIC COMMENT THAT WE TRY TO DISCUSS THOSE POLICY RECOMMENDATIONS IN THIS COMMITTEE. BUT ALSO THAT I WOULD LIKE TO MAKE A SUGGESTION THAT IT BE CIRCULATED ONE MORE TIME FOR REVIEW TO THE CHITEE BEFORE -- COMMITTEE BEFORE IT GETS POSTED ON ANY SITE ANYWHERE SO THAT YOU KNOW IF WE HAVE ADDITIONAL COMMENTS ON EACH OTHER'S COMMENTS WE CAN SORT OF GET THAT ALL WORKED OUT AHEAD OF TIME IF IT'S POSSIBLE TO DO THAT. I KNOW I GOT A WHOLE BUNCH OF CALLS THE DAY IT WENT UP ON THE WEBSITE. WHAT ARE YOU GUYS THINKING ABOUT? HOW DID YOU GET TO THIS AND THAT AND THE OTHER THING. I'M LIKE GEE I HAVEN'T EVEN READ IT YET I DON'T KNOW WHAT WE'RE THINKING ABOUT. I THINK WHEN WE HAVE SUBCOMMITTEES WE NEED TO SOMEHOW SHARE THE SUBCOMMITTEE WORK WITH THE WHOLE COMMITTEE IS AT LEAST A LITTLE BIT OF TIME FRAME BEFORE IT'S SHARED WITH THE --
WELL IN THIS CASE WE DIDN'T HAVE A SUBCOMMITTEE AT ALL. THIS IS A STAFF PREPARED DOCUMENT. NOW THERE IS A REQUIREMENT THAT IT BE POSTED -- THAT'S A QUESTION I HAD. ARE WE ABLE TO CIRCULATE IT AMONGST OURSELVES AND COMMENT ON IT WITHOUT IT BEING POSTED UNTIL IT'S IN FINAL FORM? OR IS THERE SOME SORT 6 REQUIREMENT FOR OUR COMMITTEE THAT IT NEEDS TO BE POSTED?
THE REASON WHY THIS DRAFT WAS POSTED AND BEFORE THE MEETING IS -- WELL FIRST OF ALL. STAFF WAS WORKING ON IT UP UNTIL RIGHT WHEN THE BRIEFING BOOKS WERE SENT OUT. THE PART OF THE SEASON WE OPTED TO POST IT BEFORE THE MEETING WAS PART OF THE FACTOR REQUIREMENTS AND THE FEDERAL ADVISORY COMMITTEE ACT REQUIRES US TO MAKE DOCUMENTS THAT WILL BE DISCUSSED IN DETAILS DURING THE MEETING AVAILABLE TO THE PUBLIC SO THEY CAN PARTICIPATE IN THE DISCUSSION.
YES. SO I DIDN'T HAVE ANY PROBLEM WITH THIS BEING PUBICALLY POSTED. I JUST FELT LIKE WE WERE CAUGHT A LITTLE BIT FLAT WITHOUT YOU KNOW HAVING SOMETHING THAT WENT OUT REPRESENTING THIS WAS A WORK PRODUCT OF THE COMMITTEE AND THE COMMITTEE HADN'T EVEN SEEN IT. SO THAT WAS ALL THAT MY COMMENT WAS DIRECTED AT. THAT I WOULD JUST LIKE TO HAVE A LITTLE BIT OF TIME WINDOW FOR THE COMMITTEE TO ACTUALLY HAVE YOU KNOW READ IT AND THOUGHTFULLY GONE THROUGH IT BEFORE WE START GETTING A LOT OF FEEDBACK.
IT DOES HAVE TO DO WITH FACT AND ERROR PRACTICE WITH RESPECT TO FAKA. AND THAT WAS MY DECISION BECAUSE WE WANTED TO PUBLIC TO BE AWARE OF THIS BEFORE WE CAME HERE. SO THAT WAS MY DECISION. AND I'LL TAKE RESPONSIBILITY FOR THAT.
I THINK PART OF IT IS IF YOU LOOK AT THE TOP ON EACH ONE OF THEM IT SAYS IT'S STAFF DRAFT HOWEVER. AND THAT TIT DIDN'T REPRESENT THE VIEWS OF THIS COMMITTEE OR OF THE GOVERNMENT. I DON'T THINK ANYBODY READS THE FINE PRINT. BUT THE FINE PRINT DID SAY THAT.
CERTAINLY BEFORE THE NEXT MEETING AND BEFORE THERE WILL BE AN OPPORTUNITY TO GO BACK AND FORTH AS A COMMITTEE BY E-MAIL TO REVISE THE NEXT DRAFT.
OKAY. THANK YOU.
DOES ANYONE HAVE ANY SUGGESTIONS FOR KICK OFF THE DISCUSSION ON POLICY RECOMMENDATIONS? ARE THERE ISSUE AREAS THAT YOU WANT TO PRYOR TIES -- PRYOR TIES FOR US.
I LIKE THE TWO COMMENTS FROM THE CMF VIEWPOINTS. SINCE WE'RE PART OF THE DISCUSSION HERE. FIRST OF ALL, ON THE DRAFT IN GENERAL, A BIG CONCERN THAT YOUR FIRST PRINCIPAL IS WE NEED TO COLLECT DATA. AND YET THAT WAS VERY MINIMALLY DISCUSSED THROUGHOUT THE REPORT. THE IMPORTANCE OF A COVERAGE DECISION BEING EVIDENCE BASED. WE SORT OF TIED COVERAGE AND REIMBURSEMENT TOGETHER AND YOU REALLY NEED TO SEPARATE THAT CONCEPT. CERTAINLY SPEAKING FOR CMS AND I SUSPECT FOR MOST PRIVATE INSURERS READING ALAN CORN'S COMMENTS AND REEDE'S ALSO, WHEN WE AS PEERS MAKE DECISIONS ABOUT THE KINDS OF THINGS WE'RE GOING TO COVER FSHTION WE WANT TO MAKE SURE THERE IS A GOOD EVIDENTARY BASE FOR IT. AND THAT EVIDENTARY BASE AT LEAST IN THE MEDICARE WORLD IS THERE ARE GOOD QUALITY CONTROLLED TRIALS THAT DEMONSTRATE THAT THE APPLICATION OF THIS TECHNOLOGY IMPROVES THE OUTCOMES OF THE BENEFICIARYS THAT WE HAVE RESPONSIBILITIES FOR. IT BRINGS UP A WHOLE HOST OF QUESTIONS IN GENETIC TESTING THAT WE AS A SOCIETY -- WE AT CMS NEED SOCIETY TO HELP US ANSWER. ONE IN IS SOME CASES GENETIC TESTING WILL ALTER TREATMENT. BUT IN MANY CASES IT WON'T. IT WILL JUST BE INFORMATION. AND I THINK THAT'S SOMETHING PERHAPS EVEN BROADER THAN US IS A QUESTION OF WHETHER HEALTH CARE DOLLARS SHOULD BE EXPENDED FOR INFORMATION WHEN IT WILL NOT ALTER OUTCOMES. WE'VE HAD THAT DISCUSSION INTERNALLY AND THAT'S CERTAINLY A TOPIC FOR FURTHER DISCUSSION. MORE SPECIFIC POLICY ISSUES, SPECIFICALLY AROUND THE SCREENING EXCLUSION. THE DRAFT IS CORRECT THAT IT HAS BEEN A LONG STANDING MEDICARE POLICY THAT CONGRESS PROHIBITS US IN ITS LANGUAGE FROM PAYING FOR TESTS THAT ARE SCREENING IN NATURE OR IN MOST CASES PAYING FOR PREVENTATIVE SERVICES. WE'VE HAD A LOT OF DISCUSSION IN THE LAST SEVERAL MONTHS AS TO WHETHER IN FACT IT WAS CONGRESS'S INTENTION. THERE ARE SOME VIEWPOINTS THAT SAY THAT CMS COULD CHANGE ITS MIND WITHOUT CONGRESSIONAL INPUT EVEN THOSE WHO THINK THAT THE CASE, THINK THAT COULD ONLY BE DONE THROUGH RULE MAKING. BUT MOST EVEN THOSE WHO THINK IT MAY BE POSSIBLE STRONGLY SUGGEST THAT WE SHOULD LET CONGRESS TELL US TO DO THAT. SINCE CONGRESS HAS BEEN VERY INVOLVED IN ADDING SCREENING AND PREVENTATIVE BENEFITS OVER THE LAST DECADE, AND THEY SEEM TO ENJOY THAT. AND THEY HAVE YET TO GIVE US A BROAD MANDATE TO DO SCREENING AND PREVENTION, PREFERRING TO TO, HOW SHALL I SAY, RECEIVE THE AL CO LAIDS OF ADDING A NEW BENEFIT THEY MAY GET FROM THEIR CONSTITUENTS. WHICH IS IN FACT THEIR JOB. SO THE AGENCY COULD BASED ON OUR LEGAL AUTHORITY CHANGE SOME OF OUR -- PERHAPS CHANGE OUR SCREENING EXCLUSION. BUT WE'RE NOT SURE THAT WOULD BE WELL RECEIVED IN CONGRESS AND BELIEVE THAT CONGRESSIONAL DIRECTION IS PROBABLY THE PREFERABLE SOLUTION. IN FACT THERE'S LEGISLATION IN FRONT OF CONGRESS NOW SPONSORED BY A WHOLE HOST OF MEMBERS ON BOTH SIDES OF THE AISLE THAT I BELIEVE HAS BEEN ENCOURAGED BY THE PARTNERSHIP FOR PREVENTION THAT WOULD REQUIRE -- WOULD ALLOW US TO DO COVERAGE DETERMINATION ZONE, SCREENING AND PREVENTATIVE SERVICES, IF THEY WERE IN FACT RECOGNIZED AS BENEFICIAL BY A NATIONAL ORGANIZATION, SPECIFICALLY CPSTF. SO THERE'S SOME LEGISLATION THERE. WE'RE NOT A LOBBYING ORGANIZATION, BUT AS WE DISCUSSED ON THE EDUCATIONAL TRAINING EARLIER THAT MAY AB ROLE FOR THIS COMMITTEE TO ENCOURAGE. ON THE OTHER POLICY ISSUE WHO CAN AND CAN'T BE PAID, THAT IS VERY CLEARLY A CONGRESSIONAL ACTION. WE CAN ONLY PAY PEOPLE THAT CONGRESS SAYS WE CAN PAY. CONGRESS HAS BEEN VERY HESITANT OVER THE 38, ALMOST 40 YEARS OF MEDICARE TO EXPAND THAT LIST. HAVING ONLY EXPANDED IT A COUPLE TIMES IN THAT 40 YEARS FROM PHYSICIANS TO ONE OTHER OCCASION NURSE PRACTITIONERS, CMSs, AND PAs AND THEN VERY NARROW EMPHASIS PHYSICAL THERAPIST AND MOST RECENTLY A VERY NARROW INDICATION FOR DIETICIANS. THAT IS GOING TO BE AN EXTREMELY DIFFICULT BARRIER I SUSPECT. CONGRESS IS NOT VERY RECEPTIVE TO ADDING NEW, ADDING NEW PROVIDERS. SO THAT IS THE ONLY WAY THAT WE CAN PAY GENETIC COUNSELORS AND THAT'S GOING TO REQUIRE SOME SIGNIFICANT SUPPORT FROM OTHERS OUTSIDE THIS COMMITTEE TO ENCOURAGE THEM TO DO THAT.
STEVE, DO YOU HAPPEN TO KNOW THE BILL, THE LEGISLATION THAT YOU REFER TO? DO YOU HAVE THE SPONSOR OR THE BILL NUMBER?
I DON'T HAVE THAT WITH ME. I CAN LOCATE THAT AND PROVIDE THAT TO THE STAFF.
TERRIFIC. ANYONE ELSE HAVE ANY COMMENTS? EMILY?
SO IN THE GREAT MINDS THINK ALIKE KIND OF THING, YOU KNOW ONE OF MY COMMENTS BACK WAS WHY CAN'T WE ENCOURAGE CONGRESS TO ENABLE GROUPS LIKE PREVENTATIVE TASK FORCE WHEN THOSE RECOMMENDATIONS COME AT A, YOU KNOW, BY A, QUOTE, DEEMED BODY, THAT ANY RECOMMENDATION THAT IS COMING FROM CERTAIN INSTITUTE OF MEDICINE OR USPFTS THAT THOSE WOULD BE AUTOMATICALLY THEN COVERED PREVENTION SERVICES. I GUESS WHAT I'D LIKE TO ASK IS, ARE THERE -- WHICH WAY DO YOU THINK THE WIND IS BLOWING? AND IS THIS SOMETHING BECAUSE CMS AND CDC THAT'S SORT OF RUNNING THE PREVENTION SIDE OF THINGS BOTH REPORT TO OUR GUY WHO WE'RE SUPPOSE TO MAKE RECOMMENDATIONS TO, TOMMY CON STAN, IS IT POSSIBLE FOR US TO SEND SOMETHING UP TO SECRETARY THOMPSON THAT BASICALLY SAYS YOU KNOW WE THINK THIS WOULD BE A GOOD THING? OR IS THERE OTHER POLITICAL THINGS THAT YOU SHOULD, YOU KNOW, MAKE US AWARE OF?
I AM NOT AN EXPERT IN HOW THE LEGISLATIVE PROCESS WORKS, BUT AS I UNDERSTAND IT SECRETARY THOMPSON PROVIDES TO CONGRESS EVERY YEAR WHAT IS CALLED THE LEGISLATIVE BUDGET. WHICH HAS NOTHING TO DO WITH MONEY, IT HAS TO DO WITH THESE ARE THINGS THAT WE RECOMMEND YOU CONSIDER FOR INACTMENT. SOMEONE HAD TO CHECK AND SEE IF I'M CORRECT BUT I THINK THAT'S THE WAY THE SYSTEM WORKS. WE CAN ENCOURAGE THE SECRETARY TO ADD THAT TO THAT PARTICULAR RECOMMENDATION TO CONGRESS. WHICH IS NOT THEN US AS GOVERNMENT EMPLOYEES LOBBYING CONGRESS DIRECTLY, BUT USING THE VEHICLE THAT CONGRESS HAS ESTABLISHED, THIS LEGISLATIVE BUDGET. I THINK THAT'S THE TERMINOLOGY.
I THINK THAT'S AN IMPORTANT POINT. THE PROCESS IS THAT WE ADVISE THE SECRETARY. WE CAN BE SPECIFIC AS WE HAVE WITH GENETIC NON-DISCRIMINATION WITH RESPECT TO INFLUENCE ON THE LEGISLATIVE BRANCH, BUT THAT'S THE MECHANISM. IT'S THROUGH SECRETARY THOMPSON.
I THINK MY POINT WAS THAT SINCE SORT OF BOTH PARTS OF THIS EQUATION REPORT TO HIM THAT IT'S DEFINITELY SORT OF 100 PERCENT UNDER HIS UMBRELLA TO BE ABLE TO DO SOMETHING LIKE THAT.
THIS IS REEDE, CAN YOU HEAR ME?
YES.
ACTUALLY IT'S THORTH MAJOR AGENCY INVOLVED HERE IS THE AGENCY TO HEALTH CARE RESEARCH AND QUALITY WHICH I DO BELIEVE RUNS THE U.S. PREVENTATIVE SERVICE TASK. AM I RIGHT?
THAT'S RIGHT. ARC DOES DO PREVENTION AS IT APPLIES TO CLINICAL PRACTICE AND WHAT GOES ON BETWEEN DOCTORS AND PATIENTS. FROM THE COMMUNITY PREVENTATIVE SERVICES WHICH IS UNDER THE PERVIEW OF CDC. REEDE, ARE YOU FINISHED? BECAUSE IF YOU AREN'T I'D LIKE TO MAKE A POINT HERE. BUT I'LL WAIT.
PLEASE GO RIGHT AHEAD HEAD.
IN LISTENING TO BOTH STEVE AND THE CONVERSATION WHICH WENT EARLIER, SOMEBODY MENTIONED THE PARTNERSHIP FOR SO THE QUESTION I THINK -- I MEAN I HEAR US GOING AROUND IS SORT OF WHAT ARE THE LEVELS FOR PREVENTION? I THINK ONE THING IS ONE WE CAN DO IS SORT OF SAY THIS IS GENETICS HOW DO WE PUSH THIS FORWARD IN TERMS OF LOOKING AT COVERAGE FOR THESE SPECIFIC SERVICES. BUT WHAT I HEAR IS THAT GENETIC SERVICES APPLY TO A LARGER CATEGORY OF PREVENTATIVE SERVICES. SO THE QUESTION I THINK WE'RE FACED IS WHAT ARE THE LEVELS FOR PREVENTION. AND WHO ARE THE MAJOR STAKE HOLDERS? SO I WAS VERY STRUCK BY YOUR POINT THE WAY YOU SAID THAT. SOME OF THE INNOVATORS IN THIS AREA IS NOT NECESSARILY THE MEDICARE PROGRAM BUT ACTUALLY PRIVATE INSURANCE COMPANIES ARE MUCH MORE ADVANCED IN TERMS OF PREVENTION THAN MEDICARE. SO I MEAN THOSE GROUPS ARE AHEAD OF THE PACT SO AS TO SPEAK SO. THE QUESTION NOT THE QUESTION BUT A QUESTION FOR US IS REALLY TRYING TO UNDERSTAND WHAT'S GOING ON IN PREVENTION AND WHO IS PUSHING PREVENTION IN THIS COUNTRY AND WHAT CAN WE AS A GROUP DO TO SORT OF PIGGYBACK OUR EFFORTS EITHER TO SUPPLEMENT WHAT THEY'RE DOING OR TO AUGMENT WHAT IS GOING ON IN THOSE CIRCLES AND WHAT KIND OF -- YOU KNOW ADVICE TO THE SECRETARY WHAT KIND OF -- YOU KNOW HOW CAN WE PROVIDE THE SECRETARY WITH GUIDANCE WHICH STRENGTHENS WHAT IS GOING ON IN THAT ARENA.
REEDE, YOU ARE PROBABLY THE BEST PERSON TO ADDRESS IT. AND JUST TO PUT IN CONTEXT. MY COMMENT WASN'T AT THAUL ALL THAT CMS DOESN'T WANT TO GO DOWN THE ROAD OF PREVENTION BUT THEIR HANDS ARE TIED BY THE STUK OF -- STRUCTURE OF THE MEDICARE PROGRAM AND LEGISLATION IN CONGRESS AND ALL OF THAT. AND THE PRIVATE SECTOR DOESN'T HAVE AS MANY OF THOSE CONSTRAINTS SO THEY'RE A LITTLE BIT MORE AT LIBERTY TO BE INNOVATIVE AND TO RESPOND MORE QUICKLY TO INVASIONS. BUT, READ, I -- REED, I DEFER TO YOU. DO YOU CARE DO ADDRESS THAT POINT.
WE'RE NOT -- WHAT I THINK THE CHALLENGE REALLY IS IS HOW DO WE DEFINE OR HOW DO WE GIVE THE SECRETARY A REASONABLE BODY OF WORK TO GET AROUND? I THINK THE THAT THE IMPLICIT GUIDANCE IS THAT WE DO WANT TO SEE APPROPRIATE GENETIC PREVENTATIVE DIAGNOSTIC SERVICES TO BE INCORPORATED INTO THE MED -- MED ACARED, MEDICARE RULES. THE ISSUE THEN IS ALL RIGHT WHAT DOES THAT MEAN? AND I THINK THAT THAT'S GOT TO GET AT TRYING TO GIVE HIM A SET OF RECOMMENDATIONS THAT SAYS THAT WE ARE URGING THE APPROPRIATE ARQ TO ANSWER THE QUESTION SZ THERE ARE FUNDAMENTAL TO MAKING SUCH A DECISION AS THAT. AND THOSE QUESTIONS ARE. AND THEY NEED TO BE SOMEWHAT I THINK DEFINED. WHILE WE ARE VERY STRONG. WHAT I DON'T THINK IS POSSIBLE IS FOR A RECOMMENDATION TO SAY FOR THE SECRETARY TO TAKE A STAMP AND JUST AUTOMATICALLY ANY TIME YOU KNOW THE PARTNERSHIP FOR PREVENTION WHICH IS AN AGENCY I HAVE GREAT RESPECT FOR YOU KNOW SUGGESTS SOMETHING THAT THEREFORE THAT OUGHT TO AUTOMATICALLY BECOME SOMETHING THAT THE TAXPAYERS OUGHT TO AUTOMATICALLY PAY FOR. THERE ARE SOME OTHER ISSUES HERE. I THINK WHAT OUR CHALLENGE IS WITHOUT HAVING TO BE OVERLY PRESCRIPTIVE IS TO AT LEAST GIVE SOME DEFINITION, SOME GUIDANCE AROUND THAT WE APPRECIATE THAT THERE IS -- DIS DIS. I THINK THAT'S THE ISSUE. THAT'S NO DIFFERENT FOR THE PUBLIC SECTOR THAN FOR THE --
READ, -- REED, YOU CUT OUT AT THE END WHERE WERE YOU MAKING THE BIG POINT.
OH. WELL [INDISCERNIBLE]
WHAT I WAS SAYING WAS ONCE I CAN GET THE SECRETARY [INDISCERNIBLE] ONCE WE ASK THE SECRETARY TO WORK WITH A DEFINED SET OF ISSUES THEN WAY CAN GET I THINK A MUCH MORE RESPONSIBLE WAY AND THOSE ISSUES AND THOSE QUESTIONS ARE NO DIFFERENT FOR THE PRIVATE, FOR THE PUBLIC SECTOR THAN THEY ARE FOR THE PRIVATE SECTOR.
REED, CAN I ASK YOU A QUESTION FROM A PRIVATE INSURANCE POINT OF VIEW? HOW FAR DO YOU -- YOUR RECOMMENDATIONS FROM THINGS LIKE THE U.S. PREVENTATIVE TASK FORCE GO IN THE PRIVATE SECTOR TO ENCOURAGING COVERAGE FOR SERVICES JUST SORT OF IN GENERAL?
THEY ARE EXCEEDINGLY IMPORTANT. BECAUSE AGAIN THEY PROVIDE THE KIND OF VERY RIGOROUS EVIDENCE BASED ANALYSIS FOR NOT ONLY WHAT WORKS AND WHAT DOESN'T WORK, BUT ALSO GIVES YOU SOME SENSE OF THE CONTEXT OF THAT WORK. SO THAT I WOULD SAY THAT PEOPLE IN THE PRIVATE SECTOR PAY A GREAT DEAL OF ATTENTION TO THAT WORK.
ONE OF THE DIFFICULTIES WITH --
COULD I ASK YOU TO IDENTIFY YOURSELF BECAUSE IT MAKES IT EASIER FOR THE TRAN SCRIPPSIST PLEASE.
I'M STEVE FROM CSF. ONE OF THE DIFFICULTIES IN WAITING FOR THE US TCF IS THEIR PROCESS IS A VERY DETAILED, SLOW ARDUOUS PROCESS AS IT SHOULD BE. AND I THINK BASED UPON THE AMOUNTS OF EVIDENCE THAT ARE OUT THERE TODAY ON THE BENEFITS OF GENETIC TESTING THAT THEY'RE A LONG WAY FROM COMING UP WITH THE RECOMMENDATIONS THAT IF WE WERE TO BE TOLD TO FOLLOW THEM IN A SIDE OUR PREFERENCE WOULD BE WE'RE GIVING PERMISSION TO USE THEIR RECOMMENDATIONS VERSUS TOLD TO FOLLOW THEM. BUT THAT'S A DIFFERENT SUBJECT. I THINK THEY'RE A LONG WAY FROM COMING UP WITH THOSE PARTICULAR RECOMMENDATIONS. I THINK THE REAL EMPHASIS THAT WE NEED TO BE ENCOURAGING IS THERE ARE SOME POLICY CHANGES THAT NEED TO OCCUR BUT WE NEED AN EVIDENTARY BASIS JUST NOT THERE. OR IT'S THERE AT A VERY SMALL EXTENT. PARTICULARLY IN THE POPULATIONS THAT WE ARE CONCERNED WITH IN THE MEDICARE POPULATION. THERE'S A WHOLE HOST OF EVIDENT YAER -- EVIDENTARY BASIS FOR THE YOUNGER POPULATIONS. BUT I'M NOT SURE THAT I NEED TO WORRY ABOUT ORDERING A PKU FOR THE POPULATION I'M CONCERNED WITH. WE NEED EVIDENTARY BASIS IF MEDICARE IS GOING TO COVER GENETIC TESTING FOR THAT PARTICULAR POPULATION AND THE THE BENEFITS OF THAT TESTING IN THAT POPULATION. SO I STRONGLY AGREE WITH REED'S COMMENTS AND HIS WRITTEN COMMENTS. THAT I THINK IS THE KEY FACTOR THAT NEEDS TO BE ENCOURAGED AND THAT'S THE DEVELOPMENT OF AN EVIDENTARY BASE FOR THESE VARIOUS TECHNOLOGIES.
REED?
I THINK THIS IS WHERE THE RUBBER HITS THE ROAD. WE HAVE BEEN TALKING ABOUT THESE ISSUES NOW FOR I DON'T KNOW ABOUT FIVE TO TEN YEARS DATING BACK TO [INDISCERNIBLE] ON GENETIC TESTING. AND I GUESS AS A PUBLIC HEALTH AGENCY AND I'LL PRESENT SOME OF THIS MORE TOMORROW MORNING, WE HAVE BEEN LOOKING FOR WAYS TO SUPPLEMENT THE OVERSIGHT MECHANISMS THAT FDA HAVE IN TERMS OF ASSURING THE QUALITY OF SERVICES AND USING EVIDENTARY BASED MODELS LIKE PREVENTATIVE SERVICES TASK FORCE. AND WE HAVE PLAYED AROUND WITH DIFFERENT KINDS OF MODEL PROCESSES THAT I'LL PRESENT TOMORROW MORNING. ANOTHER OPTION FOR DEVELOPING THIS SORT OF EVIDENCE BASED APPROACH AS WE MOVE FORWARD. AND LET ME GIVE YOU AN EXAMPLE. WE HAVE BEEN WORKING VERY CLOSELY KREENTLY WITH THE US PREVENTATIVE SERVICES TASK FORCE AND THE HRQ USING THE EXPERIMENT OF BRAC-1 TESTING AS AN EXAMPLE. USING ONE OF THE EVIDENCE BASED CENTERS AND LOOKING AT THE EVIDENCE. AND WE'VE BEEN MEETING WITH VARIOUS FOLKS ABOUT THIS. AND IT'S VERY OBVIOUS THAT FOR MOST OF GENETICS TESTING AND TECHNOLOGY THE WHAT THE U.S. PREVENTATIVE SERVICES TASK FORCE WOULD DO IS RETURN INSUFFICIENT EVIDENCE AS A CRITERIA. SO THIS IS A PROBLEM. BECAUSE IN THE MEANTIME THESE TESTS ARE WIDELY USED. THERE ARE OBVIOUSLY DIRECT TO CONSUMER CAMPAIGNS ABOUT THEM. AND SO WHAT WE NEED TO DO IS DEVELOP A PROCESS THAT IS, CAN GUIDE AND HELP BODIES LIKE THE US PREVENTATIVE SERVICES TASK FORCE AND OTHER TECHNOLOGY ASSESSMENT PROCESSES TO DO A FIRST LOOK AT GENETIC TECHNOLOGIES WHEN THEY COME OUT OF THE RESEARCH OVEN. IDENTIFY THE GAPS, THEN USE THE PROCESSES OF THAT A COLLECTION -- DATA COLLECTION THAT ARE A BIT MORE TARGETED USING PUBLIC PRIVATE PARTNERSHIPS AS MODELS. SOME OF YOU MAY HAVE HEARD ME SING THIS TUNE NOW FOR FIVE YEARS .
CAN YOU BRING DR. CORIA'S MIKE BACK ON PLEASE?
WE'VE BEEN LISTENING TO THIS FOR TEN YEARS. [LAUGHTER]
ACTUALLY YOU ARE ABSOLUTELY RIGHT. YOU HAVE BEEN LISTENING TO ME FOR TEN YEARS. SO BEAR WITH ME I. THINK THERE WILL BE ANOTHER PROCESS THAT I'LL PRESENT TO YOU TOMORROW. ANOTHER EXPERIMENT, A THREE-YEAR EXPERIMENT TO SEE HOW WE CAN DO THIS. BUT TO ME THAT'S THE MOST IMPORTANT MISSING LINK BETWEEN RESEARCH AND PRACTICE IS THE SORT OF HOW DO WE IMPLEMENT AN ORDERLY PROCESS OF TRANSITION THAT USES BOTH THE REGULATORY OVERSIGHT MECHANISMS THAT ALREADY EXIST ALONG WITH PROCESSES OF PUBLIC AND PRIVATE PARTNERS COMING TOGETHER TO WEIGH IN ON WHAT'S READY FOR PRIME TIME AND WHAT'S NOT READY FOR PRIME TIME. AND I THINK I'LL JUST END HERE.
I HAVE A SUGGESTION 6 THEN. I DON'T KNOW IF THIS LENDS ITSELF TO IT OR NOT BUT I SORT OF LIKE THE PROCESS WE WENT THROUGH IN TERMS OF PRYOR TIESING -- PRIOR TIESING OUR LARGER ISSUES. BECAUSE THERE ARE SO MANY ON THIS LIST HERE OF POSSIBLE TOPICS FOR RECOMMENDATION WHETHER WE SHOULD UNDERTAKE A SIMILAR EFFORT HERE WHERE WE DETERMINE WHAT SHOULD BE THE FOEK US OF OUR EFFORTS AND KIND OF PRYOR TIES AMONGST OURSELVES AND SEE WHAT COMES UP. OTHERS MAY SAY THERE'S NO REASON WE CAN'T LOOK AT EACH AND EVERY ONE OF THOSE ISSUES AND DEVELOPMENT RECOMMEND DAXS FOR EACH BUT I SUSPECT THAT WOULDN'T BE QUITE AS HELPFUL TO THE SECRETARY OR ANYONE ELSE IF WE WERE TO CAST THAT BROAD OF NET AND PERHAPS WE SHOULD BE A LITTLE BIT MORE FOCUSED ON SOME OF THE MOST -- SOME OF THE RECOMMENDATIONS THAT HAVE THE GREATEST LIKELIHOOD OF PRODUCING AN IMPACT. I THROW THAT OUT FOR DISCUSSION. BUT I'M TRYING FIGURE OUT HOW DO WE MOVE FROM THE THEORETICAL WE KIND OF KNOW WHAT OUR GOAL IS, BUT TO GET TO THE NITTY-GRITTY OF WHERE SHOULD WE FOCUS OUR DELIBERATIONS? NOBODY COULD KNOW WHICH THIS LONG WITH WHAT THE SECRETARY HAS TO DEAL WITH. SO I THINK THAT WOULD BE A VERY GOOD IDEA.
I JUST -- I ALSO THINK THAT'S A TERRIFIC IDEA. I JUST WONDERED WHETHER WE WANTED TO SORT OF FINISH WITH ANY GENERAL COMMENTS FIRST BEFORE MOVING ON TO THAT. I HAD JUST A COUPLE OF ONES I WANTED TO GET ON THE FLOOR AND I DON'T KNOW IF THERE WERE OTHERS. JUST REALLY QUICKLY AND THE REASON I WANTED TO SORT OF MAKE THEM PUBICALLY IS SO PEOPLE COULD THINK ABOUT THEM PARTICULARLY DURING THE RECOMMENDATIONS. I HAVE MORE DETAILED WRITTEN COMMENTS I CAN GIVE TO THE STAFF. ONE IS TO JUST PICK UP ON AN EARLIER THEME I THINK THAT TOBY CITROEN DID WELL. THE STAFF I THINK DID A FABULOUS JOB OF PUTTING THIS DOCUMENT TOGETHER AND COVERING A VERY BROAD AREA. THE ONE AREA WHERE WI ENCOURAGE THEM TO WORK A LITTLE BIT MORE ON IS MAKE A STRONGER STATEMENT OF NEED. IN PARTICULAR FRAMING OUT SOME OF THE COST ISSUES. WHY IS THIS SOMETHING IMPORTANT TO CONSIDER NOW? WHAT KINDS OF DOLLARS ARE WE TALKING ABOUT? HOW QUICKLY IS THIS AN EMERGING ISSUE. IF I AM THE SECRETARY WHY SHOULD I CARE ABOUT THIS TODAY? I THOUGHT THAT THERE NEEDED TO BE MORE OF THAT IN THE FRONT MATERIAL IN THE REPORT. THEN THE OTHER PIECE WHICH MAY COME UP IN THE SPECIFIC RECOMMENDATIONS IS I APOLOGIZE BUT I WASN'T AT THE PREVIOUS MEETING AND PERHAPS THIS WAS COVERED AT THAT TIME. I WAS A LITTLE BIT CONCERNED ABOUT SOME OF THE STATEMENTS ABOUT THE PORTION OF -- SIZABLE PORTION OF COSTS GOING TOWARDS ROYALTY FEES. WASN'T SURE WHETHER THERE WAS ACTUAL DOCUMENTATION SUCH AS A SURVEY THAT DOCUMENTED THAT AS A STATEMENT OR NOT OR WHETHER THAT WAS SIMPLY THROUGH TESTIMONY. I JUST WANTED TO SORT OF PUT THAT MARKER IN THERE THAT IF IT'S SUPPORTED BY REALLY GOOD EVIDENCE THAT SHOULD BE INCLUDED IN THE REPORT. AND BE CONSIDERED IN FOLKS MAKING RECOMMENDATIONS. IF IT ISN'T IT NEEDS TO BE NOTED THAT MORE COUCHED LANGUAGE THAT IT WAS BROUGHT UP BY YOU KNOW IN TESTIMONY AND THROUGH COMMENTS. BUT I'M NOT SURE THAT WE HAVE THE HANDLE ON EXACTLY HOW BIG THAT PROBLEM IS.
DID STAFF WANT TO COMMENT ON --
THE EVIDENCE PROVIDED IN THE REPORT WAS PRIMARYLY -- PRIMARILY GIVEN BY ANGELA GONZALES AT OUR LAST MEETING. ACTUALLY DEBRA MIGHT BE ABLE TO COMMENT. MIDDLE DRED PUBLISHED A FEW PAPERS AND -- PAPERS AND I THINK IT GOES INTO THIS TOPIC A BIT. STHARTS.
MILDRED AND JOHN AND I HAVE WORKED MOSTLY ON THE AVAILABILITY OF TESTING THE IMPACT ON GENE PATENTS. I DON'T KNOW THAT THE QUESTION DIRECTLY ADDRESSED AS TO THE COST. BUT IT CERTAINLY HAS HAD A SIGNIFICANT IMPACT ON AVAILABILITY OF TESTING BECAUSE 25 PERCENT OF 50 PERCENT OF LABORATORY DIRECTORS REPORT THAT THEY HAVE NOT DONE OR HAVE HAD TO STOP DOING TESTING BECAUSE OF GENE PATENT ENFORCEMENT. THAT'S SHUTTING DOWN LABORATORIES. BUT THEN WHEN YOU CAN LICENSE PATENTED TECHNOLOGIES, THE COSTS OF THOSE ARE EXORDINANT RELATIVE TO WHAT WE GET PAID FOR DOING THE TESTING. THAT'S DATA THAT'S HARD TO COLLECT BECAUSE USUALLY THERE'S A CONFIDENTIALITY OR LIKE A KEEP YOUR MOUTH SHUT ABOUT WHAT THE CONDITIONS OF THE LICENSE ARE SO THAT MUST PEOPLE WHO HAVE A LICENSE CAN'T TALK ABOUT HOW MUCH IT COST THEM TO THEN -- WHAT THE ROYALTY FEES ARE. BECAUSE PART OF THE AGREEMENT IS THAT YOU CAN'T SAY. SO THAT WOULD BE INFORMATION THAT IS VERY HARD TO COLLECT. BUT THE UPFRONT LPSING FEES ARE ANYWHERE FROM $10,000 TO OVER $100,000 THEN A PER TEST FEE OF ANYWHERE FROM 12 TO I THINK I'VE HEARD UPS TODAY 60 -- UP TO $60 PER TEST. FOR A RANGE OF DIFFERENT GENETIC PATENTS.
I WOULD JUST ENCOURAGE THE STAFF TO PUT IN MORE NUANCE STATEMENTS THAT CAPTURES SOME OF WHAT WE JUST HEARD HERE THAT ISN'T SORT OF A DEFINITIVE STATEMENT OF YOU CAN POINT TO A PARTICULAR STUDY OR COLLECTION OF INFORMATION THAT.
BUT HOPEFULLY PART OF THE DATA COULD BE COLLECTED THROUGH THE NAS STUDY THAT'S BEING DONE ON GENE PATENTS IMPACT ON RESEARCH AND HEALTH CARE SERVICES. BUT I DON'T KNOW IF THEY'RE GOING TO COLLECT THAT INFORMATION.
DEBRA, DO YOU HAVE ANYTHING ADDITIONAL BEYOND RONDING TO THAT?
I WAS GOING TO SUGGEST THAT STAFF HAS COME UP WITH VARIOUS POLICY OPTIONS. MAYBE ONE WAY TO DO THIS IS TO GO THROUGH THE POLICY OPTIONS. AND VET THOSE AND THEN GO BACK AND SEE IF THERE ARE OTHER AREAS WHERE POLICY APTIONS -- OPTIONS HAVE NOT BEEN RECOMMENDED WHERE WE MAY BE ABLE TO ADDRESS SOME OF THE ISSUES. BUT THAT MAY BE A WAY OF WORKING THROUGH THE VARIOUS ISSUES THAT WE HAVE TO ADDRESS.
JOAN?
HAD A QUESTION IN TERMS OF THIS ISSUE AROUND THE ROYALTIES AND REIMBURSEMENTS. AND IS THERE ANYTHING AND WOULD IT BE USEFUL TO HAVE SOMETHING THAT REQUIRED A TRANSPARENCY IN TERMS OF THAT INFORMATION FOR REIMBURSEMENT TO OCCUR?
IT WOULD BE GREAT IF THERE WAS A CPG CODE THAT COULD CAPTURE THAT. BUT THE PROBLEM IS THAT THEN A REIMBURSEMENT LEVEL WOULD BE SET FOR THAT CPG CODE THAT PROBABLY WOULD NOT REFLECT THE ACTUAL COST OF THE ROYALTIES BECAUSE THEY WOULD VARY. A NUMBER OF DISCUSSIONS HAVE LOOKS AT WAYS OF HAVING LIKE MASS BARGAINING FOR DIFFERENT GENE PATENTS SO THAT IT WASN'T LABORATORY BY LABORATORY BUT THERE WAS MORE STANDARD POLICY ON HOW MUCH IS A REASONABLE AMOUNT TO CHARGE PER TEST FOR ROYALTY PAYMENTS. BUT I'M NOT AWARE OF NILG MOVING FORWARD -- ANYTHING MOVERING FORWARD ON THAT FRONT. BUT IT WOULD BE GREAT IF THERE WOULD BE TRANSPARENCY. THE PROBLEM IS THAT ALL OF THE LICENSES THAT I HAVE SEEN, CONTRACTS, SPECIFY THAT YOU CANNOT DISCUSS ANY OF THE TERMS OF THE LICENSE AGREEMENT ONCE YOU SIGN. SO I DON'T KNOW HOW YOU WOULD ACHIEVE THAT TRANSPARENCY. MAYBE A LAWYER COULD IN THE GROUP COULD SAY WHETHER THAT, THOSE TWO THINGS ARE CONTRADICTORY. I DON'T KNOW. IT WOULD SEEM TO ME THEY ARE. BUT FOR HEALTH CARE COVERAGE IT WOULD BE VERY NICE TO HAVE THOSE OUT IN THE OPEN SO MORE PEOPLE WERE AWARE OF WHAT THEY WERE PAYING FOR AND WHAT THE COST OF GENE PATENTING AND ENFORCEMENT IS ON HEALTH CARE COSTS.
EMILY?
I HAD A COUPLE THINGS THAT I THOUGHT WERE IMPORTANT FOR TO US TALK ABOUT THAT AREN'T ON THE TOPICS LIST. AND THEY WERE ACTUALL AGRESED -- ADDRESSED IN THE BODY OF THE TEXT BUT SOMEHOW DIDN'T MAKE IT ON TO THE PULLOUT LIST. ONE IS THE TIME DILEMMA IN TERMS OF REAL SPREENTIVE -- PREVENTATIVE MEDICINE WHERE THE COST OF THE TEST WOULD BE BORNE PROBABLY BY YOUNGER PEOPLE ON PRIVATE INSURANCE AND MANY OF THE BENEFITS WOULD BE REAPED BY OLDER PEOPLE AO MEDICARE. SO YOU HAVE DIFFERENT PARTS OF THIS PAYOR ORGANIZATION BEARING THE COST AND GETTING THE BENEFITS. SO THIS DEALS WITH YOU KNOW SORT OF COMMON COMPLEX DISEASE. SO WHEN YOU GET INTO CARDIOVASCULAR PREVENTATIVE MEDICINE, DIABETES PREVA -- PREVENTATIVE MEDICINE, THOSE KINDS OF DISEASES WILL GET AWAY FROM MON OJENIC KIND OF DISEASE. AND I THINK THAT'S SOMETHING THAT IN THE U.S. SYSTEM WE'RE GOING HAVE TO GRAPPLE WITH. THE SYSTEMS THAT HAVE NATIONALIZED HEALTH CARE DON'T HAVE TO WORRY ABOUT THAT BECAUSE THEY VERY CLEARLY SEE THE BENEFIT. AND THE OTHER THING IS THIS WHOLE -- WE HAVE EVIDENCE BASED COVERAGE DECISIONS BUT WE HAVEN'T REALLY TALKED ABOUT THE HEALTH ECONOMICS OF THAT. SO IN TERMS OF MAKING A CASE FOR PREVENTATIVE MEDICINE, DO WE NEED TO JUST MAKE A MEDICAL CASE? DO WE NEED TO MAKE A HEALTH ECONOMICS CASE? AND YOU KNOW ARE WE ONLY GOING TO GET COVERAGE IF WE MAKE A HEALTH ECONOMIC CASE AND NOT JUST A MEDICAL CASE? SO I THINK THAT'S ALL PART OF THAT WHOLE PREVENTATIVE MEDICINE SHIFT FROM THINKING ABOUT GENETICS JUST IN TERMS OF PEDIATRIC, KNEE ONATEA -- KNEE ONATAL, SCREENING, MONOGENIC DISEASE AND GETTING INTO THE NEXT WAVE OF THE 234 GENETIC COMPONENT OF MOST MAJOR DISEASES. SOMEHOW WE HAVE TO DEAL WITH THAT OR AT LEAST HIGHLIGHT IT AS AN ISSUE THAT NEEDS TO BE DEAL DEALT WITH IN THE FUTURE IF NOT IMMEDIATELY .
.
HOW ABOUT THE THRESHOLD ISSUE -- IT'S THRESHOLD ISSUE TO ME BAUT IT'S -- BUT MAYBE IT'S CLEAR TO EVERYBODY ELSE. DO WE NEED OR WANT TO BE SPECIFIC ABOUT WHAT TYPES OF TECHNOLOGIES WE'RE TALKING ABOUT? WE USE THE TERMS VERY LOOSELY. GENETIC TECHNOLOGY AND TEST AND SCREENING. I GUESS THIS GETS TO THE EVIDENCE BASED DISCUSSION. ARE WE AT THE POINT WHERE WE CAN ESTABLISH GUIDELINES OR GUIDANCE OR HELP THE SECRETARY COME UP WITH AND THIS GETS TO THINGS THAT REED WAS TALK ABOUT AND OIRDSS -- OTHERS, WAYS TO ASSESS WHETHER SOMETHING HAS VALUE AND SHOULD BE INCORPORATED IN THE WHOLE HEALTH CARE TREATMENT DIAGNOSIS AND TREATMENT I DON'T KNOW DO WE NEED TO GO DOWN THAT PATH? OR WHETHER WE PURPOSELY LEAVE IT VAGUE. BIS KEEP TALK IN GENERAL TERMS BUT WE ALL KNOW FROM PREVIOUS DISCUSSIONS THAT SOME TESTS ARE BETTER THAN OTHERS. SOME HAVE VALIDITY, SOME DON'T. OR HAS THAT MAJORITY -- BRIDGE ALREADY BEEN CROSSED AND WE DON'T NEED TO WORRY ABOUT THAT.
THIS IS REED. I WOULD HOPE THAT WE WOULD BE ABLE TO START AT LEAST FOR OUR DISCUSSION OF THESE ISSUES BEING SPECIFIC ABOUT EXAMPLES. I AM WORRIED THAT TOO MUCH OF THIS DISCUSSION RIGHT NOW AT LEAST IS STILL AT A VERY HIGH LEVEL. SO THAT FOR EXAMPLE IF YOU TAKE AND THE DNA STOOL ASAY EXAMS, THOSE ARE YOU KNOW VERY -- SDIS. THEY HAVE A MEANING FOR WHAT IT WILL OR WILL NOT MEAN IN TERMS OF DIAGNOSTIC COLONOSCOPYS GOING FORWARD. IT HAS SOMETHING TO DO OF WHETHER OR NOT WE WILL STILL DO REGULAR YOU KNOW FECAL OCCULT BLOOD. SO THAT'S A VERY CONCRETE EXAMPLE OF A KIND OF TEST. AND THEN AS WE HAVE ALLUDED TO THERE ARE THINGS THAT HAVE TO DO WITH, YOU KNOW, IS YOUR KID GOING TO HAVE BLUE EYES KIND OF THING. WHICH IS A DIFFERENT KIND OF CATEGORY. I THINK THAT IT WOULD BE USEFUL FOR US TO HAVE SOME SPECIFIC CATEGORIES OF THESE THINGS AS WE TRY TO DIG A LITTLE DEEPER INTO THE IMPLICATIONS OF THEM. I THINK MORE AS FINDING EXAMPLES THAT HIGHLIGHT AND ILLUSTRATE THE REAL POLICY DIMENSIONS THAT WE'RE TRYING TO CONCERN OURSELVES WITH.
DEBRA?
WELL IN READING THIS I WENT BACK TO SCCGQ'S DEFINITION OF TEST. OPTION ONE. A LOT OF IT IS BASED ON FAMILY HISTORY AND FOCUSES ON TRULY INHERITABLE GERM LINES VARIATIONS OR MUTATIONS THAT CAUSE DISEASE RISK. BUT THE SACGT'S DEFINITION WAS MUCH BROADER AND WENT BEYOND GERM LINE TESTS THAT INCLUDING POTENTIALLY EVEN INFECTION DISEASE APPLICATIONS. SO HOW THOSE ARE TREATED IS VERY DIFFERENT THAN THOSE GENETIC TESTS AND SERVICES THAT ARE RELATED TO INHERITABLE GERM LINE VARIATIONS AND MUTATIONS THAT CORRELATE WITH DISEASE RISK. AND SO I DON'T KNOW IF WE NEED TO GO BACK AND REVISIT THE SACGT DEFINITION OF WHAT GENETIC TESTING OR GENETIC SERVICES WERE. BUT IT STILL REMAINS -- THAT WAS ONE POINT THAT WAS VERY CONTROVERSIAL AT THE TIME THAT SACGT DEVELOPED NA DEFINITION.
CAN I DRAW YOUR ATTENTION, DEBRA, TO PAGE 13, 14 WHERE WE PROPOSE THE DEFINITION FOR GENETIC TECHNOLOGIES AND GENETIC SERVICES TO KIND OF FRAME THE DISCUSSION IN THIS REPORT AND CERTAINLY TAKE FROM THAT SCGT DEFINITION BUT IS ALTERED A BIT TO BETTER REFLECT THE DIFFERENT DISCUSSION SO. RATHER THAN TAKING THE DEFINITION FROM A MORE OVERSIGHT PERSPECTIVE BROADEN IT FOR THE PURPOSES OF THIS TOPIC.
BUT THEN WHEN YOU PUT SUCH AN EMPHASIS ON FAMILY HISTORY HISTORY, THEY ARE NOT INCLUDED IN FAMILY HISTORY UNLESS THEY'RE GENETIC CANCER SYNDROMES. SO I'M CONCERNED ABOUT PUTTING SOMATIC MUTATIONS INTO THE SAME CATEGORY AS GERM LINE MUTATIONS AND VARIATIONS. YOU WILL NOT PICK UP SOMATIC -- SYMETIC CHANGES BY FAMILY HISTORY.
I JUST WANT TO CONCUR WITH DEBRA THAT I THINK WE HAVE TO BE REALLY CLEAR YOU KNOW WHEN WE'RE TALKING ABOUT CANCER GENETICS ABOUT WHETHER WE'RE TALKING ABOUT INHERITED CANCER SYNDROMES OR TUMOR PROFILING. IF WE'RE GOING TO EXPAND GENETIC TESTING TO INCLUDE TUMOR PROFILING, WHICH HAS BEEN SUGGESTED, AND YOU KNOW A LOT OF THE --
WELL IT IS PART OF THE DEFINITION.
RIGHT.
THE EXISTING OF THE SAGCT ONE.
RIGHT. BUT WE NEED TO BE VERY CLEAR WHEN WE ARE TALK ABOUT THESE THINGS WHICH SCENARIO WE'RE TALKING ABOUT. SO MATIC GENETICS OR GERM LINE GENETICS.
ACTUALLY IF WE TAKE COLORECTAL CANCER AS AN EXAMPLE, YOU CAN HAVE THE WHOLE SPECTRUM OR CONTINUUM OF GENETIC AP POLICE STATION -- APPLICATIONS FROM THE RARE TO THE COMMON. BECAUSE AT THE END OF THE DAY WHAT WE'RE TRYING TO DO HERE IS FIGURE OUT THE VALUE ADDED OF EITHER A GENETIC TEST ON THE BLOOD TO BE DETERMINED GERM CELL MUTATIONS OR A GENETIC TEST ON THE STOOL TO FIGURE OUT WHETHER THERE ARE DNA SIGNS OF THE CANCER. OR A SIMPLE FAMILY HISTORY TOOL THAT YOU ADMINISTER AND YOU FIND OUT THAT THE PERSON HAS A FIRST DEGREE RELATIVE WITH EARLY ONSET COLORECTAL CANCER. AND WE NEED TO BE ABLE TO USE WHATEVER SACGT HAS DONE BECAUSE THEY SPENT A LONG LONG TIME FIGURING OUT THE DEFINITION OF GENETIC TEST. AND SECOND THE PROCESS OF VALIDATION OF GENETIC TEST. THEY USE THE ANALYTICAL VALIDITY AND THE LC ISSUES IN A VERY DETAILED FASHION. AND THEY KIND OF LAID IT OUT LIKE COLD SUPPER FOR US TO IMPLEMENT. SO HERE WE ARE TALKING ABOUT REIMBURSEMENT OF SERVICEs AND SO YOU HAVE TO COME BACK TO WHAT IS IT WE'RE BEING REIMBURSED FOR. IS IT SEMATICS TEST ON THE STOOL OR A GENETIC TEST COMBINED WITH THE FAMILY HISTORY TAKEN TO FIND THE PEOPLE WITH THE APP SIN DPRORMZ COALO REKTA -- SYNDROMES FOR COLA OKLAHOMA CITY -- COLORECTAL CANCER OR SOMEBODY THAT HAS A FIRST DEGREE RELATIVE WITH COLORECTAL CANCER AT AGE 65 THEREFORE WOULD NEED COLONOSCOPY SOONER. SO THE BOTTOM LINE IS WHAT THE VALUE ADDED SNI THINK THE HEALTH ECONOMIC DISCUSSION IS VERY APROPOS HERE. BECAUSE IN A TIME OF LIMITED RESOURCES WHERE WE ARE COMPARING OPTIONS A AND B YOU YOU HAVE TO KIND OF COMPARE A GENETIC BASED PRACTICE OF MEDICINE WITH A YEN PRACTICE OF MEDICINE THAT DOESN'T USE GENETICS AND DOES A -- DO A DECISION ANALYSIS LIKE THEY DID THE 6 MP WITH TREATMENT OF ACUTE LEUKEMIA. SO WHAT ARE THE PROS AND CONS. THEN AT THE END OF THE DAY HOW MUCH MONEY ARE WE GOING TO SPEND IF WE USE A FAMILY HISTORY SLASH GENETIC TOOL ON SOME PEOPLE AND A DNA BASED ASAY ON OTHER PEOPLE. SO WE HAVE TO I THINK THE MAIN RECOMMENDATION HERE FROM ME IS TAKE THE HIGH LEVEL DOCUMENT THEN BEGIN TO APPLY IT TO VERY SPECIFIC CASE STUDIES. PERHAPS GUIDED BY WHAT SACGT HAS DONE FOR US OVER THE LAST THREE YEARS, BECAUSE THEY LAY IT OUT CLEARLY. THE TYPES OF GENETIC TEST FOR DIAGNOSIS, PREVENTION, PREDICTION THEN THE PROCESS OF VALIDATION ON HOW TO DO THIS.
COULD I ASK HIM TO TAKE IT ONE STEP FURTHER BECAUSE I'D REALLY LIKE IT TO BE SAID AND I WONDER THAT AFTER WE'VE DONE ALL THIS ANALYSIS, WHAT DO YOU SEE AT THE LEVEL OF WHAT LEVEL OF DETAIL COMING OUT OF OUR COMMITTEE AFTER WE'VE DONE THAT? BECAUSE I THINK THAT'S WHAT WAYS TRYING TO GET AT. BUT THE QUESTION IS DO WE THEN -- OBVIOUSLY WE'RE NOT GOING TO SEE OURSELVES THEN RECOMMENDING SPECIFIC TESTS FOR THIS SECRETARY TO GAIN ACCESS TO. BUT DO YOU SEE THIS AS LEADING TO SOME SORT OF AN AL GA RHYTHM FOR THE NEXT STEP OF POLICY OR PROCESS DEVELOPMENT IN THE SECRETARY'S OFFICE? WHAT DO YOU SEE?
I THINK, REED, YOU SHOULD BE ABLE TO DETERMINE THIS AS A COMMITTEE. BECAUSE I DON'T SEE YOU GETTING INTO THE REAL SPECIFIC TEST BY TEST DISCUSSION BUT MORE OF A HIGH LEVEL GUIDING PRINCIPAL FOR HHS ON HOW TO GO ABOUT DOING THIS. RATHER THAN -- I MEAN YOU COULD BE DECIDED -- GUIDED BY THE CASE EXAMPLES AS YOU GO THROUGH THE DELIBERATIONS. BUT I SEE KIND OF AN INTERMEDIATE MENU OR COOK BOOK IN A WAY BUT NOT VERY DETAILED. BECAUSE THAT HAS TO BE WORKED OUT BY THE AGENCIES THEMSELVES. ESPECIALLY CMS AND WHAT THEY COVER FOR. BUT MORE OF A GENERAL GUIDELINES PERHAPS OF THE KINDS THAT SACGT STARTED DOING YOU KNOW DURING THE TENURE. THEN LEAVE IT FOR IMPLEMENTATION. BUT YOU CAN MONITOR THE PROGRESS OF HSS AGENCIES.
THANK YOU.
I WANTED TO GO BACK TO THE POINT OF DEFINITION AND BRING PEOPLE BACK TO PAGE 13. WHERE I THINK THE IMPLICATION AND WAS A SIDE BAR FROM STAFF. IT WAS THEIR INTENT THAT THESE BE GERM LINE MUTATIONS HERE. YOU KNOW IF YOU LOOK AT -- IT CERTAINLY SAYS SEMATIC GENE OTYPES BUT IF YOU LOOK AT ALL THE EXAMPLES THEY'RE ALL GERM LINE.
SO CAN THAT SEMATIC BE TAKEN OUT.
THAT'S THE PURPOSE OF THIS DISCUSSION WOULD TO BE GET THE FEELING OF THE COMMITTEE. WE NEED TO MOVE FORWARD ON THIS AS HE SAYS WE'VE BEEN DEBATING THIS ISSUE OF DEFINITION ALSO FOR TEN YEARS. IF YOU LOOK AT THE EXAMPLES THEY'RE ALL CLEARLY GERM LINE.
IN A WAY THIS IS KIND OF LIKE THE GENETIC EXCEPTIONALISMISH AOU. SOMETIMES IT'S GOOD TO LUMP IT IN. AND SOMETIMES IT'S GOOD TO EXCLUDE IT. AND IT'S THE SAME SORT OF THING WITH SEMATIC MUTATIONS. WHEN YOU ARE TALKING ABOUT GENOMICS AND MEDICAL ADVANCES AND IMPROVING HEALTH CARE IT'S PROBABLY GOOD TO INCLUDE THE SEMATIC MUTATION. BUT WHEN YOU ARE TAUKING ABOUT -- TALKING ABOUT THE KIND OF REGULATORY ISSUES OF APPROPRIATE COUNSELING, APPROPRIATE ORDERING OF THE TESTS, GETTING AT THE TESTING THROUGH FAM I HISTORY -- FAMILY HISTORY, THOSE ONLY APPLY TO GERM LINE MUTATIONS. SO I GUESS THERE ARE TIMES WHEN YOU WOULD WANT THE DEFINITION TO INCLUDE ALL TYPES OF GENOMICS BEYOND JUST INHERITABLE AND THERE ARE OTHER TIMES WHEN YOU REALLY NEED TO DWRISH BETWEEN -- DISTINGUISH THEN SEMATIC AND GERM LINE BECAUSE THE IMPLICATIONS ARE VERY DIFFERENT. SEMATIC MUTATIONS HAVE NO IMPLICATIONS FOR THE REST OF THE FAMILY MEMBERS WHEREAS GERM LINE MUTATIONS YOU ARE DEALING WITH AN ENTIRE FAMILY.
SO THAT IF WE TOOK IT OUT HERE OF THE DEFINITION IN THE SIDE BAR HERE SINCE IN FACT ALL OF THE REST OF THAT SIDE BAR RELATE TO INHERITED, THEN YOU COULD PUT A SOME SORT OF A THING AT THE END. AND THE TITLE HERE IS WHAT ARE GENETIC TECHNOLOGIES AS OPPOSED TO GENOMIC TECHNOLOGIES. AND EITHER IN THE TEXT OR SOMEWHERE ELSE YOU COULD PUT THAT SIMILAR APPROACHES MAY BE USED FOR LOOKING FOR AT SYMATIC MUTATIONS USING GENOMIC TECHNOLOGIES.
AND EVEN INFECTIOUS DISEASE.
RIGHT.
BECAUSE PART OF OUR CHARGE IS BIOTERRORISM ALTHOUGH WE DON'T LOOK AT THAT THAT MUCH. BUT INFECTION -- INFECTIOUS DISEASE AND EMERGING INFECTIOUS ORGANISMS THAT TYPE OF THING ALSO BENEFITS FROM THE SAME FAMILIAL COMPONENT.
I GUESS IT'S JUDGMENT THAT YOU ALL HAVE TO MAKE WHAT TO INCLUDE OR NOT TO INCLUDE. JUST REACTING TO WHAT ED SAID ABOUT SIMILAR APPROACHES CAN BE DEVELOPED FOR GENOMIC TESTS. I THINK WHAT COMES TO MY MIND IMMEDIATELY THAT IS THOSE APPROACHS ARE NOT SIMILAR. I MEAN WHAT APPLIES TO GERM CELLS IS DIFFERENT FROM WHAT APPLIES TO SYMATIC GEL -- CELLS AND I THINK WE'RE GOING TO BE FACED INCREASINGLY WITH THE MIXING AND MATCHING OF BOTH TECHNOLOGIES. SO DID YOU HAVE A -- IF YOU HAVE A FIRST DEGREE RELATIVE WITH COAL OWE REKTA 8 -- COLORECTAL CANCER YOU MAY USE A SEMATIC CELL TO FIND EARLY EVIDENCE OF CANCER RATHER THAN COLONOSCOPYS. SO WE'RE GOING TO BE MIXING AND MATCHING SE NATICK -- SEMATIC AND GERM CELL MUTATION. THAT'S JUB NUMBER ONE. EVEN AMONG GERM CELL VARIATION WE DO HAVE TO CLEARLY SEPARATE THE HIGH PENETRATE THE PKUs, THE HUNTINGTONS OF THE WORLD TYPE DISEASES FROM THE DAY-TO-DAY VARIATION THAT'S ASSOCIATION -- ASHOS -- ASSOCIATED WITH LOW DISEASE RISK AND COMPLEX GENE AND GENE ENVIRONMENT INTERACTION. BECAUSE THOSE KIND OF GENES DO NOT LEAD TO SIGNIFICANT FA MILL YEAH AGGRAVATION. THEIR USE AS TECHNOLOGY IS LIKELY TO BE BUNDLED UP TOGETHER IN GENOMIC PROFILES THAT HAVE VERY DIFFERENT, A KIND OF A MORE STURDY I GUESS VALIDATION PROCESS IF YOU WILL THEN THE SIMPLE SINGLE GENE GENETIC DISORDER. SO AS WE GO THROUGH THIS PROCESS FOR REIMBURSEMENT AND COVERAGE OF DIFFERENT TESTS I GUESS YOU START BY ASKING THE HIGH LEVEL QUESTIONS. ARE THE TESTS AN ALITCALLY VALID? DO THEY PREDICT ANY CLINICAL OUTCOMES? MORE IMPORTANTLY THAN THEY CHANGE THE OUTCOME IN REDUCING MORTALITY AND. AS YOU GO THROUGH THIS ARMED WITH THE PROCESSES OF THE DIFFERENT GROUPS LIKE THE TASK FORCE EACH ONES OF OF THESE TYPES OF TESTS MAY HAVE A DIFFERENT THRESHOLD FOR CROSSING BETWEEN THAT'S READY FOR PRIME TIME, WHAT'S NOT READY FOR PRIME TIME. WE SPENT QUITE OF A BIT OF DISCUSSION ABOUT RARE DISEASES. BECAUSE NE RARE DISEASES AND I GUESS THIS COMMITTEE WILL HAS TAKEN IT ON TOO, MAY HAVE A DIFFERENT KIND OF A THRESHOLD BECAUSE OF THE DIFFICULTY IN COLLECTING DATA BECAUSE THE DISEASES ARE RARE AND THE VALIDATION PROCESS THEREFORE MAY BE EITHER DELAYED OR NONEXISTENT TO BEGIN WITH. SO WE HAVE THE WHOLE GAMUT HERE OF TESTS FROM SEMATIC TO GERM CELL, AND FROM WITHIN THE GERM CELL YOU HAVE THE HIGHLY PEN TRANT SINGLE GENE DISEASES TO TO A BUNCH OF SNIPS AND POLYMORPHISMS AND GENE EXPRESSION PROFILES THAT YOU USE IN FUTURE BUNDLING EITHER FOR PHARMACOGENOMICS OR PROFILES OF THE KIND THAT SOME COMPANIES ARE SENDING US RIGHT NOW PREMATURELY FOR PREVENTATIVE MEDICINE.
ED, THEN AGNUS?
MY POINT WAS PURELY PRACTICAL. HAVING HEARD THESE DISCUSSIONS FOR THE PAST DECADE AND BEEN A PARTY TO THEM FOR THE PREVIOUS THREE YEARS, RECOGNIZING THAT THE DIVISION BEEN SEMATIC AND GERM LINE CAN GET A LITTLE BIT BUSY -- FUZZY WHERE SOMETIMES SEMATIC SUPERIMPOSED UPON GERM LINE AS OPPOSED TO AS FAR AS WE UNDERSTAND PURELY SEMATIC THOUGH AT THIS TIME THERE MAY BE SOME PREDISPOSITION WAS JUST A WAY OF MOVING ON AND GETTING BEYOND THAT AND AT LEAST GETTING SOMEWHERE. BY LIMITING THE DEFINITION TO GERM LINE AND TAKING IT OUT OF THE DEBATE THAT HAS TO DO WITH THESE DEFINITIONS THAT ARE USED IN THE CLINICAL LABORATORIES SO THAT WAS MY PURCHASE -- PURPOSE. I THINK WE COULD SAY LET'S FOCUS ON GERM LINE FOR THIS DOCUMENT. LET'S RECOGNIZE THAT THE LESSONS WE LEARNED HERE MAY BE APPLICABLE TO SEMATIC. BUT LET'S AT LEAST MOVE FORWARD AT THIS POINT THAT. WAS THE PURPOSE OF MY COMMENT .
I WAS THINKING MORE -- WELL WHAT YOU WERE SAYING, DR. McCABE, THAT IF YOU DIVIDE IT THAT WAY WE MAY BE DEFEATING THE PURPOSE OF WHAT WE WERE TRYING TO DO EARLIER LOOK AT THE EDUCATION OF THE GENERAL HEALTH FORCE. IS THAT IF YOU ARE ONLY LOOKING AT THE GERM LINE MUTATIONS THEN THE FOCUS ON THE GENOMICS AND WHERE MOST OF THE ACTUAL PRACTICE IN GENOMICS IS GOING TO BE DONE IN THE PRIMARY CARE THE WE DON'T FOCUS ON THAT AND ADDRESS SOME OF THE REIMBURSEMENT ISSUES WE KNOW THAT REIMBURSEMENT VERY OFTEN DRIVES PRACTICE AS WELL AS WHAT PEOPLE IMPLEMENT. SO I THINK THAT WE SHOULD CONTINUE TO IF WE DO THAT WE'RE LOOKING SPECIFICALLY AT THE GENETIC TECHNOLOGIES AND FOCUS ON THE GERM LINE MUTATIONS I THINK MAYBE IF WE HAD NOT JUST AT THE END OF THE DOCUMENT BUT SOMEWHERE RIGHT AFTER THIS ANOTHER SIDE BAR LOOKING AT WHAT ARE GENOMIC TECHNOLOGYS SO THEY SORT OF ARE DEALT HAND IN HAND THE WAY WE DID IN OUR PREVIOUS DOCUMENTS WHERE WE WERE PUTTING THE SLASH BETWEEN GENETICS AND THEN GENOMICS. BECAUSE I THINK IT HAS TO BE ADDRESSED. AND I DO THINK EVEN FROM THE LEVEL OF SEMATIC MUTATIONS IT WILL INVOLVE FAMILY HISTORY. BECAUSE WE'RE -- FOR EXAMPLE IN THE OVARIAN CANCER TESTING THEY'RE PROPOSING, THE USE OF PROCEED YUM IX, THAT THEY'RE ALREADY TALKING ABOUT LOOKING AT GUIDELINES FOR WHO WOULD BE BEST TO USE THIS TEST FOR BASED ON FAMILY HISTORY. SO ALTHOUGH THE PROCEED YOMIC MAY BE PICKING UP A CERTAIN SEMATIC PATTERNS OR TUMOR PROFILE OF THOSE PROTEIN PATTERNS IN AN OVARIAN CANCER, THEY'RE STILL WOULD BE USING FAMILY HISTORY TO DETERMINE WHO WOULD MAKE USE OF THAT TEST.
I WAS JUST TALKING TO SUZANNE AND CERTAINLY WE COULD ADD A SIDE BAR THAT WOULD DEAL WITH THE SEMATIC AND OTHER GENOMIC TECHNOLOGIESS EVEN GETTING INTO SOME OF THE ISSUES ABOUT GENOMIC TECH ' -- TECHNOLOGIES APPLIED TO MICRO BIOLOGIC ORGANISMS. BUT IF WE LOOK AT -- AND I UNDERSTAND THAT A LOT OF WHAT WE DO ARE REALLY THE APOLICTICBILITY TO THE GENERAL POPULATION ARE GOING TO GO BEYOND THIS. BUT I THINK THAT IT'S IMPORTANT THAT WE MOVE FORWARD AFTER A DECADE AND NOT GET HUNG UP AGAIN HERE.
DEBRA?
IN THE CONTEXT OF COVERAGE AND REIMBURSEMENT THE GENETIC COUNSELING ONLY APPLIES REALLY TO THE GERM LINE MUTATIONS. WHEN YOU TALK ABOUT THE TESTING SERVICES, LABORATORY TESTS ARE ALL CODED WITH THE SAME CPT CODES REGARDLESS OF WHETHER YOU ARE TALKING ABOUT GERM LINE LOOKING FOR GERM LINE MUTATIONS OR LOOKING FOR SEMATIC MUTATIONS. SO IN THE CONTEXT OF COVERAGE AND REIMBURSEMENT, IT'S ALL THE SAME CODE ANYWAY REGARDLESS OF WHETHER YOU ARE DOING SEMATIC OR GERM LINE OR WHATEVER.
AND THEY'RE ALL INADEQUATE.
SO BY INCLUDING THEM AS SIDE BARS WITHIN HERE BUT SEPARATING THEM OUT PERHAPS WE COULD TRY TO MAKE THOSE DISTINCTS AND NOT HAVE THEM CONTINUE TO BE BLURRED .
IT SEEMS TO ME THAT THAT'S REALLY A THRESHOLD QUESTION. WHAT ARE WE TALKING ABOUT WHETHER WE'RE TALKING ABOUT COVERAGE AND REIMBURSEMENT. COVERAGE AND REIMBURSEMENT OF WHAT? THEN WE SEEM TO GO AND WE TAKE A LEAP AND WE ALL DO IN OUR DISCUSSIONS, IN THE REPORT, IN THE PUBLIC COMMENTS, GENETIC TECHNOLOGIES NEED TO BE COVERED AND REAM BURSD. -- REIMBURSED. BUT WE HAVE TO BACK UP A LITTLE BIT AND THIS GETS TO REED'S POINT AND OTHERS OF WE'RE NOT REALLY SAYING THAT. WE'RE NOT SAYING ALL TECHNOLOGIES NEED TO BE COVERED. AND SO PERHAPS THERE'S SOMETHING THAT WE NEED TO DO IN THE WAY OF RECOMMENDATIONS PERTAINING TO WHAT SCIENTIFIC EVIDENCE IS NECESSARY, WHERE ARE THE GAPS THAT WOULD HELP DECISION MAKERS BE THEY FEDERAL GOVERNMENT PROGRAMS, BE THEY PRIVATE INSURERS, MAKE THE RIGHT DECISION IN TERMS OF COVERAGE AND SUBSEQUENTLY REIMBURSEMENT?
I THINK ONE OF THE THINGS THAT'S IMPORTANT TO THINK ABOUT WHEN YOU COME TO PREDISPOSITION OR RISK ASSESSMENT TESTING IS IN MUCH OF THE WAY FAMILY HISTORY HAS BEEN USED IN THE PAST, THIS TESTING IS QUITE LIKELY TO BE USED AS SOME KIND AFTER GATE KEEPER FOR -- KIND OF A GATE KEEPER FOR MORE INTENSIVE MONITORING. EARLIER, DO IT MORE FREQUENTLY. TO AGNUS'S POINT YOU IDENTIFY PEOPLE WHO WOULD BENEFIT FROM EXPENSIVE TESTING. WHERE YOU NEVER WOULD RECOMMEND IT FOR GENERAL POPULATION SCREENING BUT FOR A SUB SET OF PEOPLE WHO ARE, QUOTE, AT RISK, SO I THINK WE NEED TO THINK ABOUT ALSO THE TRICKLE DOWN EFFECT OF A RISK ASSESSMENT TEST AS A GATE KEEPER FOR OTHER MORE TRADITIONAL MONITORING TESTS. YOU KNOW BRCA-1 POSITIVE INDIVIDUALS START MAMMOGRAMS EARLIER. START MAMMOGRAMS A WHOLE LOT EARLIER THAN GENERAL POPULATION SCREENING. THERE ARE GOOD MONITORING THINGS. AND NOT ONLY DO WE NEED TO WORRY ABOUT WHETHER THE PRIMARY GATEKEEPER TEST IS COVERED, BUT AL 10E ONCE PEOPLE ARE PUT INTO A RISK CATEGORY BASED ON THAT GATE DAOEPER -- GATEKEEPER TEST IS THERE MONITORING -- THEIR MONITORING THEN ALSO COVERED? BECAUSE THAT THEN -- YOU KNOW THEY'RE NOT SYMPTOMATIC SO IT'S STILL SYMPTOMATIC TESTING BUT IT'S ABSOLUTELY MEDICALLY INDICATED. OR WE ALL BELIEVE IT IS ANYWAY. SO I THINK THAT'S ANOTHER WRIFRNG THAL WE SOMEHOW HAVE TO CONSIDERATE AT SORT OF THE RISK ASSESSMENT TEST AS A GATEKEEPER FOR MORE STANDARD MONITORING ANALYSIS.
AND NOT ONLY THE MORE EXPENSIVE MONITORING BUT ALSO THE FOLLOW-UP THINGS THAT MAY BE DONE LIKE PROPHYLACTIC MASTECTOMIES, WILL THEY BE COVERED. I MEAN THE REAL SORT OF TREATMENT CHOICES THAT PEOPLE WHO ARE IDENTIFIED THEN AS BEING AT HIGH RISK MAY CHOOSE TO HAVE DONE.
YES. THE WHOLE PREVENTATIVE MEDICINE STRATEGY YOU KNOW WHETHER IT'S COLOSTOMY, MASTECTOMY, AN YOU'VE AREKT MI, WHATEVER.
THIS IS REED. I'LL REFER MOST OF MY COMMENTS I TRIED TO WRITE A LOT OF IT DOWN AND I THINK YOU ALL HAVE COPIES OF IT SO I WON'T WASTE YOUR TIME REHEARSING ANY OF THAT. BUT WHAT I THINK IS I LIKE WHETHER WHAT JUST GOT STATD IS IT'S THAT LEVEL OF DETAIL THAT I THINK WE NEED TO AND I THINK THIS IS MAYBE WHAT MAY LEAN WAS GETTING AT EARLIER. AS WE START TO WORK SOME OF THOSE OUT WE THEN BY DELVING IN THAT KIND OF DEPTH OF THE DOWN STREAM CONSEQUENCES OF SOME OF THESE THINGS THAT WE START THEN TO THINK ABOUT WHAT OUR POLICY RECOMMENDATIONS MIGHT BE -- MIGHT NEED TO LOOK LOOK. WHAT I'M SORT OF GETTING AT HERE IS THAT THINGS HAVE CONSEQUENCES. AND YOU KNOW ONE OF E THINGS I HOPE IS THAT WE DON'T WIND UP PUTTING OURSELVES IN A POSITION WHERE IN ADDDY -- ADVOCATING FOR A GOOD THING THAT IT MEANS THAT AUTOMATICALLY A NEW TEST BECAUSE IT IS AVAILABLE AND EXCITING AND GOOD GETS -- BECOMES THE SUBJECT OF SOMETHING THAT IS AUTOMATICALLY REIMBURSEMENT -- REIMBURSABLE. WHEN IT MAY RESULT IN FIVE OTHER THINGS NEEDING TO OCCUR THAT ARE ASSOCIATED WITH IT. MAYBE THOSE THINGS ARE APPROPRIATE, MAYBE NOT. BUT THEN THAT ONE NEW THING CAUSES MAYBE FOUR OTHER DIAGNOSE NAOISIC RESTUDIES -- DIAGNOSTIC RESTUDIES TO CONFIRM OR WHATEVER. THEN THE ECONOMICS OF THAT GET TO THE POINT WHERE YOU KNOW IT BECOMES CRAZY. AND AT SOME POINT IN THIS I JUST WANT TO MAKE SURE THAT WE DON'T POSITION OURSELVES AS BEING IRRESPONSIBLE TO THE NOTION THAT THINGS OCCUR IN CONTEXT TO OTHER THINGS. AND HOW DO YOU THINK ABOUT THAT IN A WORLD OF REAL CONSTRAINTS IS I THINK SOMETHING THAT WE COULD ADD. IS HOW DO YOU APPROACH THOSE KINDS OF ISSUES? OR DO YOU SIMPLY SAY THAT THAT'S YOU KNOW LET WHATEVER HAPPENS HAPPEN AND THAT'S NOT OUR RESPONSIBILITY TO THINK ABOUT.
ED?
I THINK YOU KNOW I THINK IT WOULD BE WORTHWHILE TO LOOK AT THE RECOMMENDATIONS NOW TO GIVE STAFF SOME ASSISTANCE WITH HOW TO, HOW TO CATCH THOSE. AND SIDNEY BEFORE SAID -- CINDY BEFORE SAID MAYBE WE SHOULD PRIORITIZE THOSE I. WENT THROUGH AND BEGAN TO CATEGORIZE THEN BUT I SHOULD HAVE LOOKED OVER MY SHOULDER AND SEEN THE STAFF HAD DONE A MUCH BETTER JOB THAN I DID ON THE FLY HERE. SO IF YOU LOOK AT THE POWER POINT SLIDE THERE IT REALLY FALLS IN TO FOUR CATEGORIES. EVEN IF WE TAKE THE BROADER ISSUES AND SEPARATE THOSE OUT AS TWO DISTINCT WE'RE DOWN TO FIVE CATEGORIES. SO THAT IT'S WAY TO ORGANIZE BY MEDICARE AND WHAT THE ISSUES ARE THERE. MEDICAID, S-CHIF. AND WHAT THE ISSUES ARE FOR ALL INSURERS. THEN THE BROADER ISSUES. SO WHAT WE MIGHT DO IS LOOK AT HOW WE COULD PRIORITIZE WITHIN EACH OF THOSE CATEGORIES PERHAPS IF WE FEEL THE NEED TO DO THAT. BUT AT LEAST IT'S AN ORGANIZING PRINCIPAL THAT ALLOWS US TO GO FROM WHATEVER THE NUMBER WAS BEFORE DOWN TO FOUR OR FIVE CATEGORIES. PERHAPS THERE COULD BE SOME DISCUSSION WITHIN EACH OF THOSE CATEGORIES NOW?
EMILY?
CAN I JUST ASK SORT OF A POINT OF ORDER? BECAUSE IF I HAD TO LOOK AT THESE AND SAY SHALL WE TALK ABOUT ALL INSURERS OR JUST MEDICARE, BECAUSE ALL INSURERS ENCOMPASSES MEDICARE AND INCLUDE AS WHOLE LOT MORE PEOPLE I WOULD SAY DO THAT. BUT IN TERMS OF WHAT HHS IS DIRECTLY RESPONSIBLE FOR ITS A ONLY MEDICARE. SO COULD YOU JUST GIVE US A LITTLE COMMITTEE GUIDANCE. SHALL WE FOCUS ON ISSUES THAT HHS CAN CONTROL RATHER THAN THE WHOLE GLOBAL INSURANCE INDUSTRY? OR HOW DO WE DO THAT?
I CERTAINLY THINK WE COULD COMMENT ON ALL. BUT IN TERMS OF WHAT THE SECRETARY HAS CONTROL OVER I WOULD THINK IT WOULD BE THOSE THINGS THAT THE SECRETARY HAS CONTROL OVER. AND SO THAT WE COULD PERHAPS HAVE SOME GUIDANCE FROM THE EX-OFFICIOS WITH RESPECT TO WHAT THEY THINK, WHERE THEY THINK THIS COMMITTEE COULD HAVE THE GREATEST IMPACT. IT'S MEDICARE AND MEDICAID. SO AND ALSO THEN THE OTHER AGENCIES SITTING AROUND THIS TABLE. SO COULD WE HAVE SOME HELP FROM THE E OFOISHY -- EX-OFFICIOS PERHAPS WITH RESPECT TO WHERE YOU SEE THE BIGGEST BANG FOR THIS COMMITTEE'S EFFORTS.
AND IF I CAN JUST SORT OF ADD TO THAT. ARE THERE STUDIES EERDS GOING ON RIGHT NOW OR POSSIBLY BEING CONTEMPLATED OR STUDIES THAT PERHAPS WE COULD SUGGEST THAT THE SECRETARY COMMISSION EITHER THROUGH ONE OF THE AGENCIES OR FROM THE OUTSIDE? I DON'T KNOW THE MOST APPROPRIATE WAY TO DO IT -- THAT WOULD GET TO THIS EVIDENCE -- ISSUE OF EVIDENCE BASED DECISION MAKING THAT COULD BE WHILE NOT DIRECTLY INFLUENCING PRIVATE HEALTH PLANS, CERTAINLY IF THERE WERE A GOVERNMENT SPONSORED STUDY THAT COULD INFLUENCE PRIVATE HEALTH PLANS INDIRECTLY IN ADDITION TO INFORMING MEDICARE PROGRAM. I DON'T KNOW THE ANSWER TO THAT . SGLF IS REED STILL THERE.
YEAH I'M HERE.
YEAH I MEAN I GUESS THIS COMMITTEE CAB MAKE AN -- CAN MAKE AN INFLUENCE IN A NUMBER OF AREAS. OBVIOUSLY HSS DIRECT JURISDICTION IS MEDICARE, MEDICAID. BUT HHS PRESIDES OVER NIH, CDC, FDA AND HRQ. AS YOU SAID REED EARLIER THAT RECOMMENDATIONS FROM THE US PREVENTATIVE SERVICES TASK FORCE COUNT A LOT WITH RESPECT TO THE PRIVATE WORLD. ISN'T THAT CORRECT?
YES. VERY MUCH.
SO OKAY SO BASIC OLYMPIC WHAT YOU ARE RECOMMENDING TO THE SECRETARY NOT ONLY SOMETHING THAT WOULD INFLUENCE MEDICARE AND MED ACARED -- MEDICAID BUT SORT OF THIS CONVENING BROKER ROLE THAT HOPEFULLY BY DOING OTHER THINGS LIKE EVIDENCE BASED COVERAGE DECISION WILL INFLUENCE THE WHOLE PRACTICE OF HEALTH, HEALTH CARE AND PREVENTATIVE MEDICINE IN THIS COUNTRY THROUGH THE PRIVATE SECTOR AS WELL. SO DO NOT -- I DON'T FEEL LIKE YOU NEED TO BE CONSTRAINED NECESSARILY BY THIS HIERARCHY OF MEDICARE, MEDICAID. NOR DO I THINK THAT THE RECOMMENDATIONS SHOULD BE DIFFERENT FOR DIFFERENT GROUPS BECAUSE WHAT YOU WANT TO DO IS LAY DOWN THE BASIC PRINCIPALS AND GUIDELINES FOR WHAT SHOULD BE COVERED AND NOT COVERED AND REAM BURSD OR NOT REIMBURSED. THEN IT WILL PLAY OUT THROUGH THE VARIOUS PROCESSES OF THE PUBLIC SECTOR AND THE PRIVATE SECTOR. AND I MEAN YOU ARE TACKLING HERE ISSUES THAT ARE RELEVANT TO THE PRACTICE OF MEDICINE AND HEALTH IN THIS COUNTRY THAT ARE WAY BEYOND JE NET IKZ. AND I DON'T THINK WE'RE TRYING TO FIX MEDICINE HERE THROUGH THE LENS OF GENETICS BUT TO TRY TO SEE HOW THOSE NEW TECHNOLOGYS FIT IN THE UNDERLYING SCHEME OF THE PRACTICE OF HEALTH CARE IN THIS COUNTRY. BUT THAT'S MY OPINION.
YES.
I AGREE WITH YOU. I MEAN I AM A LITTLE -- I'M STRUGGLING BECAUSE I THINK THE U.S. PREVENTATIVE -- I MEAN I'M NOT SURE THAT I UNDERSTOOD THE QUESTION THAT YOU POSED. BUT I JUST WANTED TO RESPOND TO THE POINT IN TERMS OF I MEAN THE U.S. PREVENTATIVE SERVICES TASK FORCE ADDRESSES PRETTY BASIC QUESTIONS. IS THERE ENOUGH EVIDENCE TO RECOMMEND A PARTICULAR SERVICE. AND YOU GET A NUMBER OF LETTERS AND I MEAN THE CHALLENGE HERE IS THAT THE EVIDENCE AND I GO BACK TO STEVE'S POINT ABOUT THE EVIDENCE MADE FOR MAKING THOSE TYPES OF EVALUATIONS IS THAT CHANCES ARE THAT THE EVIDENCE THAT IS REALLY OFTEN NONEXISTENT AND SO THE RECOMMENDATION THAT COMES OUT AS I, INSUFFICIENT EVIDENCE. THAT NO THAT IT'S DISKUFRJED BUT THAT'S THERE'S NOT SUFFICIENT EVIDENCE. SO I THINK THE U.S. PREVENTATIVE TASK FORCE DOES A LOT OF GOOD WORK. BUT I HAVEN'T HEARD AROUND THE TABLE SORT OF QUESTIONS THAT WE HAVE THAT WOULD BE APPROPRIATE FOR THAT PARTICULAR BODY. HOWEVER, ARC ALSO HAS THE EVIDENCE BASED PRACTICE CENTERS WHICH ADDRESSES THE MORE POLICY SORT OF LIKE HIGHER LEVEL QUESTIONS IN TERMS OF I MEAN IF THIS COMMITTEE HAD A PARTICULAR QUESTION THAT IT WANTED TO ADDRESS OUR EPC PROGRAMS COULD ADDRESS A PARTICULAR QUESTION. I MEAN THE EPC PROGRAM IS SUCH THAT IT'S NOT ONLY RELIES ON THE PUBLISHED LITERATURE, BUT IS INCREASINGLY LOOK AT THE GRAY LITERATURE. LITERATURE IN REPORTS AND INKRES -- INCREASINGLY PULLING YOU KNOW REPORTS AND EXPERIENCES SORT OF PRACTICAL EXPERIENCES TO DRAW CONCLUSIONS AND TO PROVIDE GUIDANCE. SO I MEAN PROVIDED THAT THIS GROUP CAME ONE A VERY -- YOU KNOW WITH A CLEAR QUESTION AND WANTED GUIDANCE ON HOW YOU KNOW HOW IT OUGHT TO TACKLE A PARTICULAR QUESTION THAT HAD POLICY RELEVANCE AS WELL AS CLINICAL RELEVANCE THE EPC PROGRAM AT ARC COULD ADDRESS THAT.
I'VE ASKED CINDY'S PERMISSION TO COME TO THE MIKE AT THE PODIUM JUST TO SAVE MY NECK TRYING TO CRANE 180 DEGREES. I THINK IF YOU LOOK HERE LET'S LOOK AT THE RECOMMENDATIONS THE POSSIBLE TOPICS FOR RECOMMENDATION. AS I LOOK THROUGH THE ALL INSURERS CATEGORY, I DON'T REALLY SEE ANY TOPICS THERE THAT DON'T APPLY TO MEDICARE AND MEDICAID. AND I SEE SOME THAT ACTUALLY COLLAPSE INTO SOME OF THE OTHER TOPICS. SO THAT IF WE LOOK FOR EXAMPLE FOR COVERAGE DECISIONS, UNDER THAT THERE ARE ISSUES LIKE THE SCREENING EXCLUSION UNDER COVERAGE DECISIONS. THERE ARE ALSO IF WE GO UNDER ALL INSURERS WE SEE EVIDENCE BASED COVERAGE DECISION. WE SEE, I SAW IT BEFORE, A NEED FOR IT RATHER THAN A LACK OF UNIFORMTY, WE COULD SAY A NEED FOR UNIFORMTY TO MAKE IT MORE POSITIVE IN COVERAGE DECISION MAKING. AND ALSO REIMBURSEMENT DETERMINATIONS COME TO SOME EXTENT UNDER THAT. BUT BASIC LI ALL OF THESE ISSUES APPLY TO MEDICARE AND MEDICAID AS WELL AS TO OTHER INSURERS. I MEAN THAT'S BY DEFINITION. MEDICARE AND MEDICAID ARE ALL INSURERS. THE ISSUE IS ARE THERE ANYTHING THERE THAT WE SHOULD EXCLUDE AS BEING TOO NUMEROUS IN TERMS OF THE MENU TO THE SECRETARY? OR SHOULD WE LOOK AT COLLAPSING THEM INTO A FEWER CATEGORIES AS A WAY OF ORGANIZING THIS?
STEVE?
WELL I'LL TRY TO GIVE YOU SOME CONCRETE RECOMMENDATIONS. I THINK PERHAPS THE ORGANIZATION IS NOT THE KIND OF ORGANIZATION WE -- I THINK THE ISSUES AS YOU WERE I THINK TRYING TO ELABORATE ARE NOT AROUND THE KIND OF PAYER, THE ISSUE ARE AROUND WHAT'S THE EVIDENCE BASE, WHAT ARE THE BARRIERS TO APPLYING THE TECHNOLOGY, USING THAT EVIDENCE BASE. AND THEN PERHAPS THERE ARE SOME SPECIFIC MEDICARE OR ALL PAYER ISSUES. SO I WOULD THAT THE FIRST PRIORITY IS DEVELOPING AN EVIDENCE BASE AND THAT THE RECOMMENDATION IS THAT THE SECRETARY TASK IS APPROPRIATE AGENCIES WHICH I THINK ARE HAHRQ, RAH, CDC TO DO A TECHNOLOGY TO COMMISSION A TECHNOLOGY ASSESSMENT THAT DEFINES THE EVIDENCE BASE -- THAT DEFINES THE CURRENT GENETIC TECHNOLOGIES, THE EVIDENCE BASE FOR THOSE AND IDENTIFIES THE GAPS AND KNOWLEDGES THAT NEEDS FURTHER TRIALS TO DETERMINE. I THINK THAT'S NUMBER ONE I. THINK NUMBER TWO IS DEFINE THE SECRETARY TASK CMS -- ACTUALLY WE CAN DO THAT. WE'VE ALREADY MADE OUR RECOMMENDATION THAT THE SECRETARY PROVIDE IN ITS RECOMMENDATIONS TO CONGRESS WAFR IT IS THAT SCREENING EVALUATIONS BECOME A ROUTINE PART OF THE MEDICARE PORTFOLIO AND THAT CMS BE ALLOWED TO MAKE THOSE DECISIONS BASED UPON THE BEST DATA THAT'S AT HAND. THREE, ARE OTHER BARRIERS SUCH AS CPT CODES AND REIMBURSEMENT DETERMINATIONS. AND WE COULD ASK THE SECRETARY TO TASK THE APPROPRIATE AGENCIES TO DEFINE -- WELL I'M RUNNING OUT OF CONCRETE IDEAS. BUT I THINK RATHER THAN SAY WHAT SHOULD MEDICARE DO AND WHAT SHOULD ALL INSURERS DO, I THINK THERE ARE THINGS AROSS THE I ACROSS THE REALM AND I THINK E IS THE EVIDENCE BASES AND I THINK THE OTHER IS INCORPS RACE -- INCORPORATING SCREENING INTO THE ENTIRE INSURER POPULATION.
BUT USING EVIDENCE BASE IN THE GRANDURE NOT THE U. S. PREVENTATIVE SERVICE TASK FORCE SLOW METHODICAL YOU KNOW PERHAPS TOO SLOW AND TOO METHODICAL SOMETIMES APPROACH. BUT LOOK AT WHERE UTILIZING BEST PRACTICES AND LITERATURE COULD DEFINE AN EVIDENCE BASE FOR THIS. A WAY TO USE IT MORE TYPICALLY IN MEDICAL PRACTICE.
IVE AEF GOT TO SIGN OFF. CAN I JUST MAKE ONE QUICK COMMENT?
OF COURSE.
WELL I'D LIKE YOU KNOW WHAT WE JUST HEARD FROM ART. AND I THINK YES IT SOUNDS GOOD AND I THINK WE OUBLGT TO CALL FOR THOSE KINDS OF LARGER INSTITUTE STUDY THAT ARQ CAN DO OUTSIDE OF THE U.S. TASK FORCE. THE ONLY OTHER COMMENT I WANT TO EMPHASIZE THOUGH IS THAT THERE OUGHT TO BE VERY CLEAR CRITERIA FOR WHEN RECOMMENDATIONS ABOUT GOING FORWARD FOR EXTENSIVE THINGS OUGHT TO BE DONE WHEN THERE IS NO EVIDENCE BASIS. AND I THINK I CAN CLEARLY UNDERSTAND THERE ARE TIMES WHEN YOU HAVE TO GO FORWARD. BUT I THINK WE GOT TO BE VERY CLEAR ABOUT WHAT THOSE -- WHAT THINGS PRECIPITATE SUCH RECOMMENDATIONS. SECONDLY, IN MY ANALYSIS I DID CALL FOR A LITTLE ATTENTION ON LOOKING AT THE ACTUAL QUALITY OF PERFORMANCE AS BASED ON PROFESSIONAL GUIDELINES FOR THE DELIVERY OF CARE IN THIS ERICA -- AREA. THE GUIDELINES MAKE THE STEP FROM THE EVIDENCE THEN THE EVALUATION OF WHAT YOU ACTUALLY PAID FOR FROM THE TAXPAYERS POINT OF VIEW. AND PRIVATE PURCHASERS BASED UPON THOSE GUIDELINES. THAT'S SOMETHING WE DIDN'T GET INTO AND I JUST WANT TO PUT OUT THE LIST FOR CONSIDERATION MAYBE SOMETIME GOING FORWARD. THANK YOU VERY MUCH.
THANK YOU FOR BEING WITH US THIS AFTERNOON, REED.
THANKS.
.
EMILY?
I GUESS I JUST WANT TO SECOND THAT COMMENT THAT MAYBE THE BROAD CATEGORIES ARE ONE COVERAGE. WHAT IS NEEDED TO ESTABLISH THAT A TEST SHOULD BE COVERED. AND THIS GOES BACK TO SACGT'S LONG DISCUSSION ABOUT CLINICAL UTILITY. WHEN IS CLINICAL UTILITY ESTABLISHS? THEN WHAT ARE THE OTHER THINGS THAT FOLLOW FROM THAT? THEN THE SECOND THING IS ONCE YOU HAVE DETERMINED THAT SOMETHING THUD BE -- SHOULD BE COVERED HOW DO YOU ASSURE ADEQUATE REIMBURSEMENT? AND THAT GETS INTO THIS WHOLE IS THE CPT CODE SYSTEM WORKING? IS THE REIMBURSEMENT ASSOCIATED WITH METHOD CODES THE RIGHT WAY TO DO IT? AND THAT'S ANOTHER WHOLE SET OF DISCUSSION ITEMS. THEN I LIKE THE SORT OF THE FINAL SORT OF EVERYTHING ELSE BROADER ISSUES CATEGORY OF THINGS THAT IF COVERAGE WAS THERE AND REIMBURSEMENT WAS THERE WHAT ARE THE OTHER THINGS THAT WE WOULD NEED TO BE CONCERNED ABOUT IN BRINGING THIS TO THE PRACTICE OF MEDICINE? SO WHAT ARE THE REMAINING BARRIERS TO ENTRY? BECAUSE I THINK A LOT OF PEOPLE THINK THAT THEY'RE ALL COVERAGE AND REIMBURSEMENT AND I THINK WE CLEARLY IN OUR MORNING SESSION ON EDUCATION AND TRAINING IDENTIFIED THAT IF A DOC DOESN'T KNOW HOW TO USE SOMETHING OR A SYSTEM DOESN'T KNOW HOW TO PROVIDE THE RIGHT CONTEXT FOR IT AND MAKE PEOPLE AWARE OF THAT THEY EVEN SHOULD BE TESTED THAT IT WON'T BE UTILIZED EITHER. SO I THINK IF WE SORT OF CAN DIVIDE THINGS INTO THOSE SET OF BINS IT WOULD HELP OUR DISCUSSION AND HELP MAKE VERY FOCUSED RECOMMENDATIONS. HOW DO WE IMPROVE COVERAGE. HOW DO WE IMPROVE REIMBURSEMENT. WHAT ARE THE THINGS WITHIN HHS THAT CAN BE ACTIVATED IN EACH OF THOSE AREAS. AND THEY JUST MIGHT SIMPLIFY
LET ME JUST ASK ONE VERY SPECIFIC. SO WOULD PEOPLE ADEGREE -- AGREE THAT ONE OF THE THINGS THE SECRETARY MIGHT DO WOULD BE TO REQUEST INPUT BY WHATEVER MECHANISM, SPECIFIC MECHANISMS HAVE BEEN RECOMMENDED, BUT REQUEST INPUT ON HOW TO IMPROVE THOSE COVERAGE DECISIONS? BECAUSE THAT'S THE KINDS OF THING THAT WE CAN RECOMMEND. THAT A STUDY BE CHARTERED OR WHATEVER.
RIGHT. AND I THINK JUST ONE LITTLE SIDE BAR YOU KNOW THERE IS A NCCLS GROUP WORKING ON SETTING A GUIDANCE DOCUMENT ON DETERMINING CLINICAL UTILITY. FOR EXAMPLE, I THINK IT WOULD BE WORTHWHILE FOR US TO LOOK AT THAT DRAFT DOCUMENT AT THE POINT WHEN NCCLS IS READY TO SHARE IT TO SEE IF THAT KIND OF A CONSENSUS PROCESS, WHICH IS WHAT NCCLS GOES THROUGH, WOULD ALSO SERVE US SEPARATE FROM SOME GOVERNMENT PROCESSES THAT MIGHT ALSO BE IN THE WORKS TO SET OUT WHAT IS EVIDENCE BASED MEDICINE AND HOW DO WE KNOW WHEN WE'VE GOT THERE?
OKAY.
I WANTED TO DRAW THE COMMITTEE'S ATTENTION TO THE FACT THAT GROUPS OFTEN, GROUPS OF THE PRIVATE SECTOR, OUR PARTNERS OR OUR FEDERAL PARTNERS, OFTEN REQUEST THAT THE AGENCY CONDUCT STUDIES. FOR EXAMPLE THE AMA COULD COME TO US AND SAY I WANT YOU TO CON DUCT A STUDY ON HEALTH LITERACY AND WE DO THOSE STUDIES. SO AGAIN IT COULD GO THROUGH THE YOU KNOW THE SECRETARY. BUT THAT THERE MAY BE AND SARAH I THINK YOU WOULD HAVE TO GUIDE US IN TERMS OF WHAT TYPE OF INTERACTION THIS COMMITTEE CAN HAVE WITH THE AGENCY. BUT IN ADDITION TO GOING THROUGH THIS YOU KNOW THE SECRETARY, IT MAY BE POSSIBLE FOR THIS COMMITTEE TO ACTUALLY REQUEST YOU KNOW THE AGENCY CONDUCT SUCH A STUDY. AND I MEAN THAT THIS COMMITTEE MAY BE ABLE TO GO DIRECTLY TO THE AGENCY AND WORK WITH THE AGENCY TO REKITE -- CREATE AND TO IMPLEMENT AND TO CONDUCT A STUDY THAT ADDRESSES THE SPECIFIC QUESTIONS WE'VE LAID OUT THIS AFTERNOON.
DEBRA?
I GUESS I HAVE KIND AFTER GENERIC QUESTION. WE TALK ABOUT DEVELOPING AN EVIDENCE BASE. BUT REALLY THAT'S DONE ONE DISEASE, ONE TEST AT A TIME. AND I DON'T SEE HOW YOU DEVELOP A PROCESS TO DO THAT BECAUSE THOSE WHO WOULD NEED TO BE AT THE TABLE WOULD DIFFER DEPENDING UPON WHAT DISEASE OR WHAT TEST YOU ARE TALKING ABOUT AS TO WHETHER THERE'S CLINICAL UTILITY FOR DOING THAT. SO CAN YOU CREATE A GENERIC PROCESS THAT WOULD WORK FOR EVERYTHING FOR MAKING COVERAGE DECISIONS?
AFTER THE EXPERIENCE WITH THE SACGT I WOULD ARGUE YOU PROBABLY COULD NOT MAKE A GENERIC DECISION THAT WOULD COVER EVERYTHING. BUT THAT SHOULD NOT PREVENT US FROM GETTING STARTED SOMEWHERE. SO YOU CAN FOCUS ON WHAT IT IS THAT YOU CAN BEGIN TO MAKE DECISIONS ABOUT. AND IDENTIFY A PROCESS FOR THAT AT LEAST.
THERE ARE FAIRLY STANDARD PROCESSES THAT MOST PAIRS GO THROUGH IN -- PAYERS GO THROUGH IN MAKING COVERAGE SDHACHLGTS VARY SOMEWHAT IN PROCESS FSHTION BUT THE CONCEPTS ARE FAIRLY SIMILAR. AND WHAT WE WOULD LIKE TO SEE, THOSE OF US WHO ARE MAKE THESE DECISIONS ARE, TO BEGIN WITH, IS WHAT'S THE STATE OF THE SCIENCE NOW? AND THE STATE OF THE SCIENCE ISN'T GATHERING EXPERTS TOGETHER. THE STATE OF THE SCIENCE IS LET'S PULL THROUGH OUR NORMAL PROCESS EVERY PIECE OF LITERATURE THAT HAS BEEN PUBLISHED AND DETERMINE THROUGH THAT WHAT THE STATE-OF-THE-ART IS TODAY. THEN THERE WILL BE GAPS. AND YOU LIST ALL THE TESTS THAT ARE THERE AND SEE WHERE THE GAPS ARE. YOU WILL LIST PARTICULAR TESTS THAT HAVE BEEN PROPOSED AND PERHAPS MAY HAVE UTILITY, AND IT WILL BE COMPLETE GAPS BECAUSE THERE IS NO PUBLISHED LITERATURE THERE. BUT EVIDENCE BASED MEDICINE BY MOST CARRIERS, BY MOST PAYORS IS AN EXPERT UPON. -- OPINION. IT'S WHAT'S BEEN PUBLISHED IN THE LITERATURE BASED ON CLINICAL TRIALS.
CAN I FOLLOW UP? SO THEN THE QUESTION IS IF YOU GO THROUGH THAT PROCESS AND IDENTIFY THE GAPS WHERE IT SEEMS THERE ARE TESTS OUT THERE BEING USED BUT THEY'RE NOT COVERED AND THERE MAY BE CLINICAL UTILITY BUT IT'S NOT IN THE PUBLISHED LITERATURE, COULD THEN A REQUEST BE MADE TO NIH TO PUT OUT AN RFA FOR THIS SERIES OF DISEASES OR TESTS FOR THEIR TO BE FUNDING TO DEVELOP THE EVIDENCE BASE SO THERE COULD BE COVERAGE?
I THINK THE SECRETARY WOULD BE VERY HESITANT TO MAKE A RECOMMENDATION LIKE THAT UNTIL WE DID HAVE THAT EVIDENCE BASE. HE WOULD NOT NECESSARILY --
NO NO THIS IS FUNDING TO DEVELOP TO SEE WHETHER IT SHOULD OR SHOULDN'T BE COVERED THAT. REQUIRES RESEARCH AND GENERALLY RESEARCH THAT'S NOT VERY WELL FUNDED AT THIS POINT. HE WOULD FIRST WANT TO KNOW WHAT IS THE STATE OF EVIDENCE TODAY.
NO NO I'M SAYING --
THEN MOVE FORWARD.
EXACTLY. SO THERE WOULD BE A BODY THAT WOULD SAY OKAY WE'VE LOOKED ATD THESE VARIOUS TESTS AN DISEASES OUT THERE BEING UTSD AND WE CAN'T FIND FOR THESE THREE WE FIND PLENTY OF EVIDENCE AND WE'RE GOING COVER THEM. FOR THESE TEN WE DON'T FIND ENOUGH EVIDENCE. COULD THAT THEN BE REFLECTED IN AN NIH TYPE NHGRI TYPE OF RFA TO ASK FOR SQUD DLIYS THAT ADDRESS THIS. BUD THEN YOU BOO HAVE TO HAVE GUIDE COLUMBINES -- GUIDELINES OUT THERE ABOUT WHAT KIND OF STUDIES, WHAT KIND OF EVIDENCE YOU WOULD NEED HOW THE STUDIES SHOULD BE DONE WHATEVER IN ORDER TO PROVIDE APPROPRIATE EVIDENCE. BUT THOSE KINDS OF STUDIES ARE NOT WELL FUNDED.
THAT'S CORRECT.
SO YOU NEVER GET THERE.
A GOOD TECHNOLOGY ASSESSMENT WILL TELL WHAT YOU TRIALS NEED TO BE DONE. BE FAIRLY SPECIFIC. THESE PARTICULAR TESTS MEETS THESE KINDS OF TRIALS. AND THEN I WOULD ASSUME THIS COMMITTEE WOULD MAKE THE RECOMMENDATION TO THE SECRETARY THAT HE TASK HIS APPROPRIATE AGENCIES TO LOOK AT THOSE PARTICULAR TRIALS. IT MAY NOT BE NIH. IT MIGHT WELL BE RAQ IN FACT IT COULD BE CMS WHO MAY IN SOME INSTANCES PROVIDE REIMBURSEMENT FOR TECHNOLOGIES THAT ARE PROVEEN IN THE CONTEXT OF TRIALS. WE DO PAY FOR CLINICAL TRIALS. IT COULD BE -- I'M NOT SURE HEALTH SYSTEMS RESEARCH WOULD FALL INTO THAT CATEGORY BUT YOU KNOW THE SECRETARY CAN TASK HIS AGENCIES TO DO WHATEVER. BUT I DON'T THINK HE WOULD DO THAT UNTIL WE FIRST HAD A STATE OF WHAT'S THE STATE OF THE ART TODAY AND WHAT ARE THE GAPS. THEN LET ME GO OUT AND FILL THOSE GAPS I. THINK WE NEED TO STUDY THE TECHNOLOGY ASSESSMENT FIRST.
I THINK WHAT DEBRA IS ARGUING IS THERE ARE QUITE A FEW GAPS. IF WE REALLY STARTED TO LOOK THERE. AND CERTAINLY IT FITS WITH WHAT CDC IS DOING, WHAT MANY OF THE AGENCIES AROUND HERE ARE DOING BECAUSE IT'S RECOGNIZED THAT THERE ARE HUGE GAPS HERE. IT CLEARLY FITS INTO THE ROAD MAP. YOU CAN'T DO TRANSLATION IF THERE'S NOTHING TO TRANSLATE FROM OR TO. WHICH ARE SOME OF THESE GAPS THAT YOU WOULD HAVE. I JUST WANTED TO GO BACK OVER THIS ORGANIZATION AND BE SURE -- BECAUSE WHAT I WANT TO LEAVE HERE THIS AFTERNOON WITH IS SOME GUIDANCE TO STAFF ABOUT HOW TO MOVE FROM THE DOCUMENT WEAVE -- WE HAVE. WE'VE HAD A LOT OF WRITTEN INPUT, A LOT OF ORAL INPUT THIS OFTEN. -- AFTERNOON. BUT THE KEY IS THE RECOMMENDATIONS AND WE NEED TO ORGANIZE THOSE. SO, STEVE, YOU HAD GIVEN US SORT OF AN OVERVIEW OF AN ORGANIZATION. EMILY, HAS I THINK TAKEN THAT ANOTHER STEP. I WANT TO BE SURE THAT EVERYBODY'S IN AGREEMENTEN ABOUT THESE CATEGORIES. THEN I WANT TO TALK ABOUT THE BROADER ISSUES. AND BE SURE THAT EVERYBODY AGREES THEY EVEN NEED TO BE THERE. SO THE COVERAGE ISSUES. THE COVERAGE ISSUES, THAT WOULD COME UNDER YOUR FIRST HEADING, WOULD IT NOT, STEVE? BECAUSE PART OF THE COVERAGE ISSUES ARE THAT EVIDENCE BASE. HOW IS YOUR ADEQUATE REIMBURSEMENT. I AM NOT SURE I DON'T REMEMBER WHAT YOUR SECOND ISSUE WAS, BUT WOULD THAT BE ACCEPTABLE AS A MAJOR CATEGORY?
I'M NOT REAL THRILLED WITH A LOT OF DISCUSSION AROUND REIMBURSEMENT BUT THAT'S BECAUSE WE ARGUE REIMBURSEMENT COMMONLY. BUT I THINK THE ISSUE AROUND WHAT PREVENTS COVERAGE AND REIMBURSEMENT IS ONE OF THOSE MAY HAVE A BETTER TITLE THAN REIMBURSEMENT. THAT I'M NOT THINKING OF AT THE MOMENT. BUT REIMBURSEMENT IS AN ISSUE AROUND WHY THINGS AREN'T COVERED. EVIDENCE IS ONE OF THEM. CPT CODES IS ANOTHER.
I THINK FOR THE PRAK TITIONER A -- PRACTITIONER COMMUNITY ONE OF THE THINGS WE'VE HEARD OVER AND OVER IS THAT REAM -- REIMBURSEMENT IS A HUGE ISSUE BECAUSE PEOPLE AREN'T DOING THESE THINGS IF THEY'RE NOT GETTING REIMBURSED FOR THEM.
WE HEAR THAT FOR EVERY SINGLE THING THAT WE PAY FOR. NO ONE HAS YET TO SAY WE PAY TOO MUCH FOR SOMETHING. WE'VE YET TO HEAR THAT COMPLAINT.
THE REAL PROBLEM IN GENETICS IS AS DEBRA .ED OUT BEFORE ALL GENETIC TETION IS COVERED UNDER ONE CODE.
14 CODES TO BE EXACT.
WELL VERY LIMITED NUMBER OF CODES THAT END UP HAVING TO BE CREATIVELY BUNDLED AND REBOUNDLED AND EVERYTHING TO GET ANYTHING TO MOVE FORWARD. WHAT WAS YOUR SECONDLE CATEGORY STEVE? MY SECOND CATEGORY WERE MEDICARE SPECIFIC ISSUES THAT ALL INSURE ES DON'T HAVE AND THAT'S THE SCREENING EXCLUSION ISSUE. THAT'S A SPECIFIC MEDICARE BARRIER THAT OTHERS DON'T HAVE.
HOWEVER, OTHER INSURERS I'VE HEARD SPEAK AND SAY THAT THEY DON'T COVER PREVENTATIVE STRATEGIES. AND SO THERE ARE OTHER INSURERS THAT DO THAT. NOT ALL, BUT SOME.
BY CHOICE. NOT BY LAW.
RIGHT.
THAT'S THE DIFFICULT WE HAVE IS THE SPECIFIC LAW THAT PERMITS THAT.
I NEED SOME GUIDANCE FROM THE COMMITTEE THEN SO WE CAN LEAVE HERE AND HAVE SOME INSTRUCTIONS TO STAFF.
CAN I COMMENT? I DON'T CARE WHETHER CMF LIKES THE REIMBURSEMENT ISSUE OR NOT. I THINK THAT THIS IS A MAJOR ISSUE THAT THE REIMBURSEMENT IS SO INADEQUATE IT DOESN'T EVEN COVER THE COST. I'M NOT TALKING ABOUT THE CHARGE. I'M TALKING ABOUT THE COST OF DOING THE TESTING. SO THAT IT IS A BARRIER TO WIDE AVAILABILITY OF THE TESTING COMPETITION FOR PRICING AND YOU KNOW ALL SORTS OF OTHER THINGS. AND UNTIL -- IF WE ARE MOVING TO GENETIC GENOMIC MEDICINE IN THE FUTURE, THAT'S GOING TO BE BASED ON GENETIC GENOMIC BEST TESTING THAT IS NOT GOING TO BE PAID FOR ADEQUATELY TO COVER THE COSTS. SO I DON'T KNOW -- I MEAN IT'S VERY COMPLEX SYSTEM OF HOW REIMBURSEMENT LEVELS FOR CPT CODES IS SET. AND I DON'T UNDERSTAND IT COMPLETELY, BUT IT'S NOT SIMPLE. AND IT'S ALSO CONSTRAINED BY THE NEW MEDICARE ACT THAT SAYS THAT THE LABORATORY FEE SCHEDULE IS FROZEN UNTIL 2009. AND THERE ARE LOT OF CONSTRAINTS ON EVEN ADDRESSING THE REIMBURSEMENT ISSUES. BUT I'M NOT SURE THAT WE'RE HAVING A LOT OF RECOMMENDATIONS OR DISCUSSIONS HERE ABOUT HOW TO CHANGE THE REIMBURSEMENT FOR GENETIC TESTING AND GENETIC SERVICES. NOT ONLY THE TESTING BUT THE GENETIC COUNSELING AND OTHER TYPES OF SERVICES WHICH ARE ALSO INADEQUATE.
SO DEBRA HAS TAKEN A STRONG POSITION IN SUPPORT OF REIMBURSEMENT. IS THERE ANY MEMBER OF THE KBHITEE THAT I EYE COMMITTEE THAT WOULD WISH US TO TAKE REIMBURSEMENT OFF OF THE TABLE?
I THINK IT NEEDS TO BE ON THE TABLE BUT IT'S SORT OF A LINEAR THING BECAUSE IT DOESN'T BECOME AN ISSUE IF THERE'S NO COVERAGE. I MEAN THEY'RE NOT GOING TO PAY FOR SOMETHING THAT'S NOT COVERED. SO THE COVERAGE PART IS THE FIRST THRESHOLD QUESTION. AND THEN SO REIMBURSEMENT IS BY ITSELF -- I MEAN IT COVERS ALL OF THE INSURERS, MEDICARE, MEDICAID, PRIVATE SECTOR AND IT'S CRITICAL. I MEAN IT'S SOMETHING THAT WE'RE TASKED WITH LOOKING AT IS BECAUSE IT'S SIGNIFICANT BARRIER TO ACCESS. SO I THINK SORT OF THINK OF THEM I DON'T KNOW IF ITS E LINEAR, HORIZONTAL OR VERTICAL, BUT .
WELL THE PROBLEM IS THAT THERE ARE CPT CODES OUT THERE AND THEY'RE GENERIC CODES. SO YOU CAN USE THOSE CODES FOR ANY KIND OF TESTING COVERED OR NOT COVERED. SO IT'S NOT CLEAR TO ME HOW INSURANCE COMPANIES KNOW WHAT THEY'RE PAYING FOR WHETHER TO COVER IT IT OR NOT SINCE THE CPT CODES ARE GENERIC. THAT'S GOING TO BE REMEDIED SOMEWHAT ABOUT THE CPT CODE MOD FIRE SYSTEM THAT'S SUPPOSEDLY COMING THIS FALL BUT IT'S NOT CLEAR UNTIL THAT HAPPENS AND LABORATORIES START USING THOSE MOD FIRE CODE -- MOD AFIRED CODES AS TO HOW MUCH THAT WILL DECREASE DENIALS BECAUSE OF COVERAGE DECISIONS. I MEAN THEY'LL NOW KNOW WHAT THEY'RE COVERING OR NOT COVERING AND CAN SAY YES OR NO BECAUSE THEY'LL HAVE INSTEAD OF JUST SAYING BLANKETLY NO BECAUSE THEY DON'T HAVE A CLUE WHAT THE TEST IS AND WHY IT WAS DONE. BUT THAT STILL DOESN'T AGRES ONCE THEY DECIDE TO COVER IT THAT IT IS A COVERED TEST THAT. WHAT YOU GET PAID IS INADEQUATE FOR WHAT IT COST YOU TO DO IT. SO YOU ARE RIGHT IT IS A LINEAR PROCESS. BUT I DON'T THINK WE CANNOT GO TO THE NEXT STEP OF AT LEAST FIGURE OUT WHAT TO GO ABOUT THE INADEQUATE REIMBURSEMENT SUPPOSING THAT SOMETHING IS COVERED. AND ADDRESS THOSE WITH -- YOU DON'T REALLY HAVE TO ADDRESS THE COVERAGE ISSUES BEFORE YOU LOOK AT THE REIMBURSEMENT ISSUES BECAUSE IT EITHER IS OR ISN'T COVERED. THE REIMBURSEMENT IS INADEQUATE EVEN IF IT IS COVERED SO. THE REIMBURSEMENT IS A SEPARATE ISSUE. AND YOU DON'T NECESSARILY HAVE TO DECIDE THE COVERAGE BEFORE YOU LOOK AT THE REIMBURSEMENT CONCERNS.
THE ONLY PLACE WOULD WE NEED TO LOOK AT COVERAGE THEN WOULD BE JUST THE SCREENING ISSUE FOR THE -- BECAUSE THAT'S WHERE IF MEDICARE DOESN'T COVER SCREENING OR C SCREENING TEST AS COVERAGE. AND I THINK THAT WAS YOUR POINT EARLIER ABOUT LOOKING TO COMMISSION AN AGENCY TO DEFINE OR TO COMMISSION HHS TO ALLOW CMS TO INCORPORATE SCREENING. SO THAT WOULD BE A COVERAGE ISSUE.
IT'S ACTUALLY IN MY WRITTEN COMMENTS BUT I WOULD JUST REMIND THE COMMITTEE THAT HHS ACTUALLY DOES HAVE A HEALTH DISCOVERY -- DELIVERY SYSTEM THAT IT'S RESPONSIBLE FOR THAT IS THROUGH THE INDIAN HEALTH SERVICE TO ACTUALLY HAVE WITHIN THE PERVIEW OF THIS COMMITTEE A DELIVERY SYSTEM AND WHILE I DON'T HAVE ANY SPECIFIC RECOMMENDATIONS BECAUSE I'M NOT QUITE SURE WHERE THERE IS GOING I WOULD JUST SORT OF PUT A MENTAL PLACE HOLDER IN THAT AS YOU MOVE TORWARD MORE CONCRETE RECOMMENDATIONS THAT YOU THEN THINK DOES THERE NEED TO BE A FOOTNOTE FOR IHS? JUST TO THINK THROUGH WHAT ARE THE IMPLICATIONS FOR HEALTH DELIVERY SYSTEM THAT CONTROLS PRETTY MUCH ALL THE ELEMENTS THAT YOU ARE TALKING ABOUT HERE DIRECTLY. I'M NOT SURE THAT THERE WOULD BE ANY SPECIFIC CIRCUMSTANCES BUT I JUST WANT TO PUT THAT ON AND OF COURSE IT IS RATHER SELF-SERVING BECAUSE IF YOU -- IF THERE ARE THINGS FOR IHS THERE ARE ALSO LIKELY FOR VA AND WE WOULD THEREFORE FIND THE RECOMMENDATIONS MORE HELPFUL FOR US.
THE CULTURE -- CULTURAL SENSITIVITY ISSUE IS CERTAINLY ONE FOR IHS AND SOME OF THE INDIAN NATIONS GENETICS DOES NOT FIT INTO THEIR BELIEF SYSTEM. SO THEY REALLY HAVE DECIDED AS A NATION NOT TO GO DOWN THIS ROAD.
DEBRA?
ONE OF THE AREAS OF COVERAGE THAT MAY BE ABLE TO BE MORE SPECIFICALLY ADDRESSED WHICH MOIAN HAD BROUGHT UP IS WHEN USE OF A GENETIC COUNSELOR IS APPROPRIATE. WE TALK ABOUT MOVING TO MORE GENETIC SERVICES BEING DELIVERED AS PART OF ALL HEALTH CARE PROFESSIONALS SERVICES. BUT MAYBE IF CRITERIA FOR COVERAGE OF GENETIC COUNSELING SERVICES COULD BE DEVELOPED THEN IT WOULD BE CLEAR WHEN THOSE COULD BE COVERED AND WHEN NOT NECESSARILY COVERED. I DON'T KNOW IF THOSE ALREADY EXIST. MAYBE SOMEONE CAN COMMENT. AND THAT WOULD BE A SEPARATE ISSUE FROM REIMBURSEMENT FOR THOSE SERVICES. BUT I THINK DEFINING WHEN AS WE MOVE TORWARD YOU KNOW THE 0 FEVERS THAT ARE DEALT WITH BY GENERALISTS AND THE 10 FEVERS THAT ARE DEALT WITH BY SPECIALISTS, I MEAN MAYBE WE NEED TO DISTINGUISH WHEN YOU WOULD PAY FOR THE SPECIAL GENETIC COUNSELING SERVICES.
I WOULD LIKE TO MOVE US ON THEN TO THE TWO TOPICS UNDER BROAD ISSUES AND DISCUSS INCLUSION OR EXCLUSION OF THOSE AND IF THEY ARE TO BE INCLUDED THEN THE RATIONALE FOR INCLUDING THEM UNDER COVERAGE AND REIMBURSEMENT OF GENETIC TECHNOLOGIES AND SERVICES. NEITHER OF THEM ARE DEALT WITH IN THE POLICY IMPLICATIONS AND THAT'S WHY I THINK IT'S IMPORTANT THAT WE ASSIST STAFF WITH THIS AT THIS POINT AND TIME. HEALTH DESPARITIES, . THE WAY I SEE THAT INCLUDED IS THAT IF THERE ARE POPULATIONS THAT ARE NOT COVERED, AND/OR NOT REIMBURSED, THEN THAT WOULD LEAD TO A HEALTH DESPARITY. BUT COULD WE HAVE SOME ADDITIONAL HELP FROM THE COMMITTEE FOR STAFF IN TERMS OF THE RATIONALE FOR THAT ONE BEING INCLUDED IN THE COVERAGE AND REIMBURSE LT MANUAL.
JUST TO PLAY DEVIL'S ADVOCATE I ACTUALLY REGARD BOTH OF THOSE ISSUES AS BEING SO IMPORTANT AS TO NEEDING TO STAND ON THEIR OWN. I DON'T SEE THEM IN THE CONTEXT OF COVERAGE AND REIMBURSEMENT BUT I SEE THEM AS BROADER THAN THAT. AND THEY COULD LEND THEMSELVES TO THEIR OWN REPORTS. EACH ONE. AND SO I AM NOT CLEAR AS TO HOW WE WOULD FIT THEM IN TO A COVERAGE AND REIMBURSEMENT REPORT OR IF WE SHOULD.
LET ME ASK A QUESTION AND SEE IF YOU THINK THAT IT'S AN ISSUE. IF YOU SET DOWN SOME CRITERIA FOR MAKING COVERAGE DECISIONS BASED ON SOME EVIDENCE, WHAT IF THAT EVIDENCE DOES NOT ADEQUATELY COVER CERTAIN ETHNIC POPULATIONS? WHAT THEN COVERAGE RECOMMENDATION DO YOU MAKE FOR THOSE POPULATIONS? AND IS THAT A HEALTH DESPARITY ISSUES THERE?
I THINK WHAT YOU'RE GETTING AT IS THE BROADER ISSUE OF THE SCIENCE DESPARITIES BY ETHNIC GROUP THAT WILL INFLUENCE THE EVIDENCE BASED THAT WILL BE USED TO MAKE COVERED -- COVERAGE DECISIONS THAT WILL THEN INFLUENCE THE HEALTH DESPARITY. SO YOU HAVE TO GO ALL THE WAY BACK TO SCIENCE.
BUT IF YOU ARE CMS AND THE EVIDENCE SUPPORTS -- ABSOLUTELY. THAT'S THE TRAIN. BUT IF YOU ARE MAKING A POLICY DECISION AND YOU KNOW FOR KAU KAGTSS THE TEST HAS BEEN -- CAUCASIANS THE TEST HAS BEEN VALIDATED, WHAT DO YOU THEN DO AS A POLICY. SAY YOU COVER IT FOR ANYBODY? OR DO YOU -- BUT THE EVIDENCE DOESN'T EXIST FOR THE OTHER YOU KNOW ETHNIC POPULATIONS. I DON'T KNOW HOW YOU BEGIN TO HELP POLICY MAKERS FIGURE OUT HOW TO MAKE THOSE DECISIONS. OR DO YOU WAIT UNTIL YOU HAVE EVIDENCE THAT COVERS ALL ETHNIC POPULATIONS BEFORE YOU MAKE A COVERAGE DECISION?
.
HOW ABOUT PROVIDER EDUCATION AND TRAINING? I THINK THE ARGUMENT HAS BEEN MADE THAT WE DO NEED THE EVIDENCE BASE FOR POPULATIONS IF WE ARE TO HAVE RECOMMENDATIONS. WHAT ABOUT PROVIDER EDUCATION AND TRAINING? AGAIN, AND I UNDERSTAND CINDY'S POINTS THAT THESE ARE HUGE TOPICS BUT IF WE FOCUS THEM I THINK WE CAN FOCUS THE TOPIC AND TAKE ONE LITTLE PIECE OF IT FOR COVERAGE AND REIMBURSEMENT NOT TRY TO DEAL WITH ALL OF HEALTH DESPARITIES BUT JUST AS THEY APPLY TO THIS TOPIC. WOULD THAT BE THEN MORE REASONABLE CINDY?
THEN HOW DOES PROVIDER EDUCATION RELATE TO COVERAGE FOR EXAMPLE? I MEAN WHAT DO WI SAY -- I MEAN WE KNOW ALL THE ISSUES ABOUT THE INADDEQUACY OF THE EDUCATION FOR OUR PROVIDERS AND THE GAPS AND PUBLIC AWARENESS AND ALL OF THAT, BUT HOW DOES THAT RELATE TO COVERAGE? EMILY IN?
I WANT TO MAKE A COMMENT ON HEALTH DESPARITIES THEN I'LL ANSWER YOUR QUESTION. I THINK THE OTHER THING THAT WE HAVE TO DO BESIDES SETTING UP STUDIES, EVIDENCE BASED STUDIES THAT TAKE INTO ACCOUNT AT LEAST THE THREE MAJOR BRANCHES OF THE HUMAN TREE AND MAKE SOME KIND OF STATEMENT ABOUT WHETHER A TEST IS OR ISN'T APPROPRIATE FOR EACH OF THOSE BRANCHES, LET ALONE YOU KNOW ALL THE TWIGS AND LEAVES THAT ARE OFF OF THOSE BRANCHES. BUT WE ALSO HAVE TO RECOGNIZE THE ECONOMIC DESPARITIES THAT EXIST AND WHETHER THERE'S A GROUP OF PEOPLE WHO ARE WILLING TO SELF-PAY AND THUS GAIN ACCESS TO THINGS EARLIER WHILE COVERAGE DECISIONS AND EVIDENCE BASED MEDICINE ARE CHURNING ALONG AND WHETHER THAT CREATES SOME ADDITIONAL HEALTH DESPARITYS OR ACCESS ISSUES HOWEVER YOU WANT TO PUT IT. BUT I THINK THERE'S A SORT OF GENETIC GROUP DESPARITY WHERE WE HAVE TO DEAL WITH THAT WHEN WE SET UP EVIDENCE STUDIES. BUT THERE'S ALSO THE ECONOMIC DESPARITIES THAT PEOPLE WHO HAVE THE MEANS WILL PAY FOR ALMOST ANYTHING. AND TO WHAT EXTENT DO WE FEEL AS A POLICY GROUP WE NEED TO ADDRESS THAT? YOU KNOW AND AT WHAT POINT IS PEOPLE SPENDING MONEY ON THINGS FOR WHICH THERE ISN'T EVIDENCE IS THAT JUST THEIR OWN SORT OF BUYER BEWARE. PEOPLE PAY FOR A LOT OF SNAKE OIL AND ONLY A LITTLE BIT OF IT WORKS. SO THAT'S ONE THING. THE OTHER IN TERMS OF PROVIDER EDUCATION AND TRAINING I THINK THAT AGAIN COMES DOWN TO POTENTIALLY AN ISSUE OF DESPARITIES. WHERE IF YOU ARE SEEING SOMEBODY AT A HIGHLY ACLAIMED UNIVERSITY MEDICAL CENTER, YOU MIGHT GET A DIFFERENT LEVEL OF PROVIDER EDUCATION. THAN IF YOU'RE SEEING SOMEONE IN A RURAL OUTPATIENT CLINIC. YOU KNOW JUST DEPENDS ON WHERE YOU LIVE AND THE KIND OF TRAINING THAT THE PEOPLE WHO YOU ARE SEEING MAY HAVE RECEIVED. SO AGAIN YOU HAVE THE ISSUE OF GETTING EQUAL ACCESS, EQUAL TREATMENT AVAILABILITY TO EVERYBODY WITHOUT HAVING EQUAL PROVIDER ABILITY TO DELIVER THAT.
MY POINT IS THAT I I GREE WITH EVERYTHING THAT YOU ARE SAYING AND I THINK OF THESE ISSUES OF BEING AT THE CORE OF THE OVERALL 6 ACCESS UMBRELLA THAT WE'VE BEEN STRUGGLING WITH. AND THEY PROBABLY NEED TO -- I THINK THEY DO MERIT FURTHER ATTENTION AND MAYBE THEIR OWN REPORTS. BUT I'M STILL NOT CLEAR ON HOW THEY DIRECTLY RELATE TO COVERAGE AND REIMBURSEMENT. NOT THAT I THINK THEY DON'T -- AREN'T IMPORTANT BUT I WANT TO FOCUS THE REPORT ON THOSE TWO ISSUES SINCE THAT'S WHAT IT'S SUPPOSE TO THEN ADDRESS THESE OTHERS WHICH WE HAVE TO GET OUR ARMS AROUND IN RA BROADER CONTEXT. BECAUSE IT CUTS BEYOND THOSE TWO ISSUES OF COVERAGE AND REIMBURSEMENT I THINK.
DEBRA THEN ART.
OH BAR -- BARBARA?
THE HEALTH DESPARITIES I THINK DIRECTLY IS RELATED TO COVERAGE AND REIMBURSEMENT SINCE THEY ARE DIFFERENT SOMETIMESS AND THEY'RE UNINSURED AND UNDERSHAOFRED. AND MEDICAID IS DECIDED STATE BY STATE IT MAY BE HARDER TO INFLUENCE THAT COVERAGE AND SO THAT MAY BE LESS ADEQUATE COVERAGE THAN SOMETHING THAT CAN BE INFLUENCED NATIONALLY. AND SO THE WAY COVERAGE AND REIMBURSEMENT IS DONE DOES CREATE HEALTH DESPARITIES AND MAYBE WE SHOULD LOOK AT THOSE ISSUES. THE PROVIDER EDUCATION AND TRAINING, AREN'T WE DOING THAT IN THE OTHER RESOLUTION? SO I DON'T RAILLY -- REALLY SEE HOW THAT EFFECTS COVERAGE AND REAM BURTSMENT SINCE COVERAGE AND REIMBURSEMENT IS DECIDED ON AN EVIDENCE BASE THAT'S NOT RELATED TO WHETHER PHYSICIANS KNOW HOW TO USE TESTS APPROPRIATELY. AND SO IN MY MIND THAT BROADER ISSUE IS REALLY MORE ADDRESSED IN THE OTHER RESOLUTION THAT WE DISCUSSED THIS MORNING AND NOT SO MUCH A PIECE OF THE COVERAGE AND REIMBURSEMENT.
MARTIN?
IT WOULD SEEM RIGHT NOW IF PEOPLE HAVE THE ECONOMIC MEANS TO PAY FOR THINGS OUT-OF-POCKET THEY'RE GOING TO PAY FOR THEM. SO THE IDEA WE WOULDN'T PROVIDE COVERAGE YOU KNOW BECAUSE SOMEBODY ELSE MIGHT GET IT I MEAN I DON'T SEE THE ISSUE THERE. I THINK PEOPLE OF LESSER MEANS ARE NOT GOING TO HAVE THE CAPABILITY NOW. SO IF YOU MAKE IT AVAILABLE, MAKE THE COVERAGE AVAILABLE THEN YOU ARE PROVIDING THEM THE MEANS. YOU ARE INCREASING THEIR ACCESS. SO I DON'T THINK WE HAVE TO -- I THINK WE CAN GET INTO THE POINT OF TRYING TO MICRO-MANAGE OR LETTING AS WAS SAID BEFORE LETTING THE PERFECT BECOME THE ENEMY OF THE GOOD IF WE'RE GOING TO SAY THAT PEOPLE DON'T HAVE ACCESS NOW THEN WE'RE GOING TO PROVIDE THEN ACCESS WE'RE ENHANCING. WE WANT TO DO WHAT WE CAN TO MAKE SURE THAT THE LEVEL OF TRAINING AND SERVICES ARE AS POSSIBLE. BUT I THINK IF WE WAIT UNTIL EVERYTHING'S PERFECT WE'LL NEVER BE ABLE TO ACT.
BARBARA DID YOU HAVE A COMMENT IN.
I WANTED TO ECHO ALMOST EXACTLY WHAT DEBRA SAID. THAT I CAN SEE THE LENGTH BETWEEN HEALTH DESPARITIES AND HOW THAT NEEDS TO BE ADDRESSED IN OUR REPORT BECAUSE WHAT COMES OUT OF OUR RECOMMENDATIONS ABOUT COVERAGE IS GONNA DIRECTLY AFFECT THE ACCESS THAT PEOPLE HAVE TO GENETIC SERVICES. AND I THINK IT'S A POINT THAT'S BEEN BROUGHT UP BEFORE NOT JUST TALKING ABOUT DESPARITIES AMONG ETHNIC GROUPS BUT ALSO ECONOMICALLY AND IF WE'RE TALKING ABOUT THINGS LIKE MEDICARE, MEDICAID AND WHAT IT'S COVERING THEN IT'S JUST VERY -- TO ME IT'S VERY PLAIN HOW THAT AFFECTS HEALTH DESPARITIES SO WE CAN HAVE THAT BE A CONTINUAL THEME THROUGHOUT THE REPORT AS TO WHY THIS IS SO IMPORTANT. BUT AGAIN AGREEING WITH PREVIOUS COMMENTS THAT THE PROVIDER EDUCATION PIECE I DON'T NECESSARILY SEE BEING DIRECTLY AFFECTED BY OUR REIMBURSEMENT DEFINITE ILY TO ACCESS TO SERVICES BUT NOT IN THIS REPORT.
EMILY?
SO I GUESS I THINK THE ONLY PLACE IT BELONGS IN THE REPORT IS AT THE END WHERE WE SAY JUST HAVING COVERAGE AND REIMBURSEMENT DOES NOT ASSURE THAT THIS BECOMES PRACTICE OF MEDICINE. THAT THERE ARE STILL OTHER BARRIERS THAT WE HAVE TO DEAL WITH. THAT'S WHERE I WOULD LIKE TO SEE SORT OF A SENTENCE AT THE END THAT SAYS THIS IS A HUGE BARRIER. IF WE OVERCOME COVERAGE AND REIMBURSEMENT WE'RE 90 PERCENT OF THE WAY THERE IN DELIVERING THIS PROMISE OF GENETICS TO THE PRACTICE OF MEDICINE. BUT THERE STILL ARE OTHER THINGS THAT HAVE TO BE IN PLACE FOR THAT TO REALLY BE TOTALLY EFFICIENT. AND THAT'S THE ONLY ROLE THAT I SEE IN THIS REPORT.
AND CAN'T WE REFERENCE THE OTHER RESOLUTION?
Y I THINK ITS ALWAYS GOOD TO CROSS REFERENCE OURSELVES. AND I THINK IT'S ALSO IMPORTANT TO -- AND I THINK PERHAPS IN THAT PARAGRAPH WE THAT REED PROVIDED US WITH THAT SHOWS THAT EVEN WHERE THERE ARE U.S. PREVENTATIVE TASK FORCE GUIDELINES THEY'RE STILL NOT FULLY UTE LIDSED. HE HAS SOME EXCELLENT DATA IN HIS COMMENTS THAT HE SENT TO US. I WANT TO THANK EVERYONE FOR A VERY PRODUCTIVE DISCUSSION AND FOR A VERY PRODUCTIVE DAY. I WANT TO ESPECIALLY THANK DR. BOUGHMAN, DR. REEDE, MISMS BERRY ALL OF OUR PANELIST AND PUBLIC COMMENTERS. WE'RE NOW GOING TO ADJOURN FOR THE DAY. MEMBERS WHO ARE PLANNING TO JOIN US FOR DINNER THIS EVENING PLEASE MEET IN THE LOBBY AT 5:40 P.M. SO THAT WE CAN -- I'M SORRY 6:40. I HAD THE NUMBER THERE. WE WOULDN'T MAKE IT FOR 5:40 QLO THINK. 6:40 P.M. IN THE LOBBY SO THAT WE CAN THEN CARPOOL TO DINNER. AND TO REMIND EVERYONE WE'RE STARTING A HALF-HOUR EARLIER TOMORROW. SO WE WILL RECONVENE AT 8:00 TOMORROW MORNING. THANK YOU AND WE'RE ADJOURNED FOR THE EVENING.