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 ABS