OCT 18 2004 - Caption Text

Confirmation Number:272542 Event Started: 10/18/2004 8:28:24 PM Event Ended: 10/18/2004 5:38:00 PM

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PLEASE STAND BY, THE CONFERENCE WILL BEGIN AT 8:30 A.M. EASTERN TIME. PLEASE STAND BY. THE CONDITION CONFERENCE WILL GIN MOMENTARILY. THE CONFERENCE WILL BEGIN MOMENTARILY.

GET FOLKS FROM OUTSIDE OR OUT IN THE HALL A MINUTE OR SO TO COME IN. MY NAME IS RAYNARD KINGTON. INL' THE DEPUTY DIRECTOR OF NIH. GOOD MORNING. AND WELCOME. IT IS A LE PLEASURE TO BE HERE REPRESENTING SECRETARY THOMPSON IN OPING THE FIFTH MEETING OF THE SECRETARY'S ADVISORY COMMITTEE ON GENETICS, HEALTH AND SOCIETY. THIS COMMITTEE WORK IS INCREASINGLY IMPORTANT IN LIGHT OF ONGOING DEVELOPMENT IN GENETIC AND GENOMES. YOUR SERVICE ON THE COMMITTEE HELPS THE DEPARTMENT AS WELL AS OTHER AGENCIES REPRESENTED AROUND THE TABLE TO STRAY ABREAST OF THE BROAD ARRAY OF CON FLEX MEDICAL, ETHICAL, SCIENTIFIC AND LEGAL USED BY GENETIC AND GENOME TECHNOLOGY. WE GREATLY APPRECIATE YOUR COMMITMENT TO THIS WORK. I'M HERE TO MARK SEVERAL IMPORTANT CHANGES THIS IN THE COMMITTEE LEADERSHIP AND MEMBERSHIP AND HONOR THE SERVICE OF THREE EXCEPTIONAL PEOPLE ONLY TWO OF WHICH I BELIEVE ARE HERE. I WOULD LIKE TO BEGIN BY RECOGNIZING DOCTOR ED EDWARD MCCABE. HE WAS APPOINT FORD EXPERTISE AND KNOWLEDGE IN THE FIELD AND EXCEPTIONAL LEADERSHIP QUALITIES AND HE DID NOT DISAPPOINT. HE WAS ALSO APPOINTED TO PROVIDE A SMOOTH TRANSITION BETWEEN THE SECRETARY ADVISORY COMMITTEE ON GENETIC TESTING AND THIS COMMITTEE WHICH DR. MCCABE CHAIRED FOR THREE YEARS. LET ME THANK YOU FOR YOUR SERVICE FOR THE MISSION TO IMPROVE HEALTH AND FOR YOUR DEDICATION AS CHAIR OF THE COMMITTEE. YOU HAVE ABLY GUIDED THE COMMITTEE THROUGH ITS FIRST YEAR OF LIFE, THROUGH A SYSTEMATIC REVIEW AND PRIORITY SETTING PROCESS THAT LED TO THE COMMITTEE STUDY PRIORITIES AND THROUGH THE DEVELOPMENT OF CONSENSUS RECOMMENDATIONS TO THE SECRETARY ON GENETIC DISCRIMINATION GENETICS EDUCATION FOR HEALTH PROFESSIONS AND DIRECTED CONSUMER MARKETING OF GENETIC TESTS. YOUR LEADERSHIP PROVIDED THE COMMITTEE WITH A FOUNDATION. WE WANT TO ACKNOWLEDGE YOUR LEADERSHIP DEMONSTRATED IN THE TRANSITION OF THE PREVIOUS COMMITTEE TO THE CURRENT COMMITTEE AND AS A TOKEN OF OUR APPRECIATION IT IS A PLEASURE TO GIVE YOU THIS CERTIFICATE FROM THE SECRETARY RECOGNIZING YOUR SERVICE TO THE COMMITTEE. [ APPLAUSE ] ANOTHER PLAQUE, I'M SURE. ( LAUGHTER )

WE WOULD ALSO LIKE TO THANK TWO MEMBERS OF THE COMMITTEE WHOSE SERVICE IS ENDING. KIM ZELLMER AND BRAD MAR GIS WERE APPOINTED FOR THEIR OWN CONSUMER ISSUES. THEY EACH DEVOTED AN EXTRAORDINARY AMOUNT OF TIME TO THE WORK COMMITTEE DURING AND BETWEEN MEETINGS AND CONTRIBUTED IN MANY WAYS TO ADVANCING OUR UNDER STANDING OF THE IMPACT OF GENETIC AND GENOME IMPACT ON FAMILIES AND INDIVIDUAL SOCIETY. MS. ZELLMER LET ME THANK YOU FOR YOUR WORK AND COMMITMENT. I KNOW THAT YOUR PERSONAL COMMITMENT PROVIDED YOU WITH INSIGHT IMPORTANT TO THE COMMITTEE DELIBERATIONS. YOUR CONSIDERATIONS HAVE BEEN ESPECIALLY VALUABLE AND WE APPRECIATED YOUR SERVICE EFORM MUSTILY. WE KNOW THAT THESE ARE INCREDIBLY TIME CONSUMING APPOINTMENTS TO COMMITTEES LIKE THIS AND WE APPRECIATE YOUR TIME. IF YOU COULD COME FORWARD, ANOTHER PLAQUE.

THANK YOU. [ APPLAUSE ]

MR. MARGIS IS NOT HERE. LET ME THANK HIM FOR HIS WORK AND COMMITMENT TO THE COMMITTEE. HE, TOO, HAS PRAT PERSPECTIVES AND INSIGHT, PERSONAL AND PROFESSIONAL TO THE COMMITTEE PARTICULARLY IN THE AREA OF THE WORK ON DIRECT TO CONSUMER MARKETING HAS BEEN PARTICULARLY INVALUABLE AND WE HAVE A PLAQUE THAT WE WILL DELIVER TO MILLIMETER WHEN HE ARRIVES. BOTH OF YOU CAN CONSIDER YOURSELVES EMERITUS MEMBERS WHICH MEANS THAT YOU CAN BE CALLED UPON ANY TIME TO WORK MORE. THE CHALLENGES POSED BY GENETIC AND GENOME TECHNOLOGIES ARE IN MANY WAYS JUST BEGINNING AND THIS COMMITTEE IS GOING TO BE INCREDIBLY VALUABLE FOR THE FORESEEABLE FUTURE AND AS WE LOOK FORWARD WE ARE PLEASED THAT WE WERE ABLE TO IDENTIFY AN EXTRAORDINARY PERSON TO FOLLOW AS CHAIR. AS I WAS DRIVING OVER FROM THE NIH I REALIZED THAT I KNEW DR. REED TUCKSON FOR ALMOST 20 YEARS. DR. TUCK SOP WAS TWO YEARS AHEAD OF ME IN THE TRAINING PROGRAM AT THE UNIVERSITY OF PENNSYLVANIA AND WHEN I ARRIVED FRESH FROM MY MEDICINE RESIDENCECY ALL OF THE CO-HARDT OF PEOPLE WHO BEGAN WHEN I BEGAN WERE TOLD THAT THE BAR HAD BEEN RAISED CONSIDERABLE IN THIS TERMS OF OUR PERFORMANCE AND THAT REED IN PARTICULAR WAS GOING TO BE A TOUGH ACT TO FOLLOW. FOR THE LAST 20 OR ALMOST 20 YEARS, 19, I HAVE COUNTED ON REED AS A COLLEAGUE AND FRIEND AND MENTOR AND HAVE NOT HESITATED TO CALL UPON HIM WHENEVER NECESSARY. WE HAVE CROSSED PATHS REPEATEDLY WHEN HE WAS PRESIDENT OF THE CHARLES DREW UNIVERSITY IN LOS ANGELES AND I OF AT THE RAND CORPORATION AND THEN LATER MOST RECENTLY HE AGREED TO REALLY SERVE ON ONE OF THE MOST DIFFICULT COMMITTEES WE HAVE HAD RECENTLY AND THAT IS THE NIH BLUE RIBBON TASK FORCE ON CONFLICT OF INTEREST POLICIES WHICH REQUIRED AN EXTRAORDINARY AMOUNT OF TIME INVESTMENT OVER A VERY SHORT PERIOD OF TIME IN ADVISING US HOW TO DEAL WITH ISSUES THAT IS OF GREAT IMPORTANT TO THE FUTURE OF THE AGENCY. CLEARLY DOCTOR TUCKSON HAS A TOUGH ACT TO FOLLOW AS WELL HERE BUT WE KNOW THAT YOU ARE UP TO THE TASK AND WE HAVE EVERY CONFIDENCE THAT YOU WILL AS YOU ALWAYS DO PERFORM ADMIRABLY AND MAKE US ALL FEEL THAT WE SHOULD WORK HARDER. WELCOME AND I'LL PASS IT OFF TO YOU, REED.

THANK YOU VERY MUCH. WELL, THANK YOU FOR THAT. AND OBVIOUSLY I JUST WANT TO GIVE A COUPLE OF SECONDS TO SEE IF EVEN THOUGH HE IS GOING TO BE WITH US IN DELIBERATIONS FOR QUITE AWHILE, BUT ED DID JUST A TERRIFIC JOB AND AS SOMEBODY WHO WAS ON THE FIRST COMMITTEE AND WATCHED THIS TRANSITION, I'M JUST -- I JUST MARVEL AT WHAT HE WAS ABLE TO ACHIEVE AS OUR LEADER BOTH ON THE FIRST AND NOW THIS COMMITTEE. BUT ED, WOULD YOU LIKE TO SAY A COUPLE OF COMMENTS, PLEASE?

WELL, THANK YOU. IT HAS BEEN TRULY AN HONOR TO SERVE ON THE SECRETARY ADVISORY COMMITTEE ON GENETIC TESTING AND THEN THE SECRETARY ADVISORY COMMITTEE ON GENETIC HEALTH AND SOCIETY. ONE OF THE THINGS YOU WILL FIND, REED, IS THAT YOU HAVE FANTASTIC STAFF WITH SARA IN CHARGE AND YOU WILL BE WISE TO LISTEN SO WHAT SARA TELLS YOU. IF YOU FOLLOW SARA'S DIRECTIONS YOU WILL LOOK EXTREMELY GOOD, IF I HAVE HAD ANY SUCCESS THAT IS THE SECRET TO IT. BUT ALSO THE COMMITTEE MEMBERS ARE JUST FANTASTIC ON BOTH OF THOSE COMMITTEES AND FROM SOME EXPERIENCES ON THE FIRST COMMITTEE I LEARND THAT YOU ALWAYS HAD MY BACK AND I HOPE THAT I CAN DO EQUALLY AS WELL FOR YOU. THANK YOU.

TERRIFIC. [ APPLAUSE ]

WE HAVE A LOT TO DO AND THANK GOD FOR EACH ONE OF YOU AND IT KB'SING IS GOING TO BE VERY INTERESTING TO WATCH AS SO MANY OF YOU ARE GOING TO HAVE A CHANCE TO PRODUCE AND SHOWCASE THE WORK THAT YOU HAVE BEEN DOING AS COMMITTEE CHAIRS OF THE SUBCOMMITTEES AND SO FORTH AND INL' AMAZED AS I READ THROUGH ALL THIS MATERIAL IS HOW HARD EACH ONE OF YOU ARE WORKING ON THIS COMMITTEE'S BEHALF AND WE OWE YOU A THANKS. THE PUBLIC WAS MADE AWARE OF THE MEETING THROUGH NOTICES IN THE FEDERAL REGISTRY AS WELL AS ANNOUNCEMENTS ON THE SACGHS WEBSITE AND LIST SERVE. I WILL TELL YOU THAT AS I HAVE COME TO REVIEW A LITTLE BIT ABOUT HOW DO YOU EVALUATE THE QUALITY OF ADVISORY COMMITTEES TO THE GOVERNMENT I AM REMINDED AS I HAVE LOOKED THROUGH SOME OF THOSE CRITERIA THAT THE NUMBER ONE WAY IN WHICH THESE COMMITTEES DEMONSTRATE THEIR VALUE TO THE NATION IS THROUGH ITS ABILITY TO REACH OUT TO THE PUBLIC AND SO I'M VERY PLEASED AND I THINK WE'RE GOING TO EVEN TRY TO DO SOME OTHER THINGS IF WE CAN TALK LATER ABOUT IN TERMS OF REDOUBLING OUR EFFORTS TO HAVE ALL OF OUR WORK INTO THE HANDS OF THE PUBLIC THAT IS MOST INTERESTED IN THIS AND THOSE WHO OUGHT TO BE MORE INTERESTED IN WHAT WE ARE DOING. AND SO THIS MEETING WAS MADE AVAILABLE THROUGH THOSE NOTICES. WE WERE RECHARTERED AGAIN THROUGH AUGUST OF 2006 SO YOU'RE STUCK. THE FOLLOWING EX OFFICIOS, AGENCY REPRESENTATIVES, WE WANT TO THANK ALL OF THEM THAT ARE HERE BUT I WANT TO MAKE PARTICULAR NOTE WE ARE JOINED TODAY ALSO BY CARRY DOMINGUS, CHAIR OF THE EQUAL EMPLOYMENT OPPORTUNITY COMMISSION. SHE WILL BE SERVING AS THE MEMBER. WE APPRECIATE YOU ARE TAKING THE TIME AND THE WE KNOW HOW IMPORTANT IT IS TO OUR COUNTRY. MR. RICHARD CAM PA NELLY DIRECTOR OF THE HSS OFFICE FOR CIVIL RIGHTS IS ALSO WITH US TODAY AND THAT IS WORTHY OF NOTE. DOCTOR FRANCES CHESNEY DIRECTOR OF ARC OFFICE OF RESEARCH AND PRIORITIES OCCUPATION HAS BEEN APPOINTED TO SEVEN AS THE NEW EX-OEX OFFICIO AND THANK YOU FOR JOINING AND SERVING AND WE ARE GLAD FOR ALL OF OUR OTHER EX OFFICIOS WHO HAVE BEEN MAINTAINING COMMITMENT TO THE COMMITTEE. CHRIS HOOK AND JOAN REEDE WILL NOT BE ATTENDING. HUNT WILL BE JOINING US TOMORROW AND SO WE THANK THEM FOR THAT. ONE OF THE MOST IMPORTANT THINGS AT LEAST TO ME COMING ON AND I'M SURE TO YOU WAS THAT GIVEN THAT WE ARE ADVISORY TO THE SECRETARY OF HEALTH, DOES THE SECRETARY OF HEALTH AND DOES HIS OFFICE CARE ABOUT WHAT WE ARE DOING? AND I WANTED YOU KNOW THAT I DID PUT IN A CALL TO THAT OFFICE AND SPOKE WITH, YOU KNOW, AS THE NEWS WOULD SAY AN UNNAMED SENIOR OFFICIAL. ( LAUGHTER )

AND I WAS ENCOURAGED THAT THE UNNAMED SENIOR OFFICIAL WAS WELL AWARE OF WHAT WE ARE DOING. I WAS INSISTENT AND ASSURED THAT WITHIN A COUPLE OF DAYS OF MY CONVERSATION THAT THE SECRETARY WOULD BE BRIEFED ABOUT THE FACT THAT THE NEW INCOMING CHAIRMAN OF THE COMMITTEE WANTED TO BE SURE THAT THAT WAS IMPORTANT TO HIM AND THAT HE WAS PAYING ATTENTION TO WHAT WE ARE DOING SO I WILL JUST SIMPLY LEAVE IT THERE AND SAY THAT I THINK IT IS IMPORTANT BECAUSE HOW -- YOU ALL ARE WORKING SO HARD ON THIS COMMITTEE THAT YOU HAVE GOT TO KNOW THAT IT IS NOT JUST BEING FILED ON A SHELF SOME WHERE. THAT THIS IS IMPORTANT. IT IS GETTING DONE. AROUND I'M GOING TO TAKE MY RESPONSIBILITY AS ED HANDS THE BATON OFF TO ME TO REALLY ENSURE THAT THAT IS HAPPENING AND SO I WILL GIVE YOU AN UPDATE ON THAT ON THE SECRETARY CONVERSATION IN THE NEXT TIME THAT WE MEET. LET ME SAY THAT THE STATUS OF THE COMMITTEE'S WORK PRODUCT SINCE JUNE WHAT HAS BEEN GOING ON. WE HAVE THE RESOLUTION ON GENETIC EDUCATION AND TRAINING OF HEALTH PROFESSIONALS. THAT COPY IS AVAILABLE AT THE DESK. IT WAS TRANSMITTED TO THE SECRETARY IN AUGUST. THE ROADMAP FOR THE INTEGRATION OF GENETICS AND GENOMES IN SOCIETY, THE STUDY PRIORITIES OF THE SECRETARY ADVISORY COMMITTEE WILL BE TRANSMITTED TO THE SECRETARY VERY SHORTLY. AND THAT WILL HAPPEN REALLY IN THE NEXT MATTER OF DAYS AND WEEKS. THE LETTER TO THE SECRETARY ON DIRECT TO CON CONSUMER MARKETING OF GENETIC TESTS IS IN THE FINAL STAGES OF REVIEW BY THE COMMITTEE AND WILL BE TRANSMITTED TO THE SECRETARY SOON. IT IS IN THE TABLE FOLDER AND THERE ARE STILL TIME IF YOU HAVE ANY LAST LAST LAST MINUTE SHORT, BRIEF, NONCONTROVERSIAL COMMENTS. SARA IS KICKING ME UNDER THE TABLE SO. FINALLY, A VERY BRIEF OVERVIEW OF THE AGENDA. OF COURSE, FIRST WE WILL START OUT WITH LEARNING ABOUT IMPORTANT HHS INITIATIVES TO PROMOTE FAMILY HISTORY TAKING. WE WILL THEN DIVE VERY DEEPLY INTO THE ISSUE OF A GENETIC DISCRIMINATION AND INFORMATION ABOUT THE NATURE, MAGNITUDE AND SCOPE OF THE DISCRIMINATION PROBLEM IN SOCIETY. WE WILL MOVE TO COMPLETING OUR DELIBERATIONS AND FINALIZING OUR RECOMMENDATIONS ON COVER AND AND REIMBURSEMENT AND THEN FINALLY BEGIN PLANNING FUTURE WORK ON TWO HIGH PRIORITY ISSUES. LARGE POPULATION STUDIES AND PHARMACOGENOMES. PUBLIC DISCUSSIONS ARE SCHEDULED FOR TODAY AND TOMORROW. WE HAVE 7 OR SO WHO REGISTERED TO PROVIDE COMMENTS. ANY OTHERS WHO MAY BE INTERESTED SHOULD SIGN UP AT THE RENAL REGISTRATION DESK AND THEN THIS IS A RELENTLESSLY PUBLIC EXPERIENCE SO IF YOU HAVE COMMENTS WE WELCOME YOU TO DO THAT. LET ME TURN IT OVER TO THE CZAR, THE GENERAL, SARA CAR WHO WILL TAKE CARE OF IMPORTANT TECHNICAL STUFF.

AS YOU KNOW, THE MEMBERS OF THIS COMMITTEE ARE APPOINTED AS SPECIAL GOVERNMENT EMPLOYEES IN ORDER TO SERVE AND EACH AT EACH MEETING I ALWAYS REMIND YOU ABOUT THE RULES OF CONDUCT THAT APPLY TOO GOVERNMENT EMPLOYEES AND TO YOU. THESE RULES ARE IN A DOCUMENT CALLED STANDARDS OF ETHICAL CONDUCT FOR EMPLOYEES OF THE EXECUTIVE BRANCH AND EACH ONE OF YOU GOT A COPY OF THIS DOCUMENT AND I KNOW YOU HAVE REVIEWED IT VERY CAREFULLY. I'M GOING TO HIGHLIGHT TWO OF THE RULES TODAY. ONE IS ABOUT CONFLICTS OF INTEREST AND THE OTHER IS ABOUT LOBBYING. CONFLICTS OF INTEREST. BEFORE EVERY MEETING YOU PROVIDE US WITH INFORMATION ABOUT YOUR PERSONAL PROFESSIONAL AND FINANCIAL INTERESTS AND THIS IS INFORMATION THAT WE USE TO DETERMINE WHETHER YOU HAVE ANY REAL, POTENTIAL, OR APPARENT CONFLICTS OF INTEREST THAT COULD COMPROMISE YOUR YOUR ABILITY TO BE OBJECTIVE IN GIVING ADVICE DURING THE COMMITTEE MEETINGS. WHILE WE WAIVE CONFLICTS OF INTEREST FOR GENERAL HIGH TEMPERATURERS BECAUSE WE BELIEVE WE ALSO RELY TO A GREAT DEGREE ON YOU TO BE A-10TIVE DURING OUR MEETINGS TO THE POSSIBILITY THAT AN ISSUE WITH ARISE THAT COULD AFFECT OUR APPEAR TO AFFECT YOUR INTERESTS IN A SPECIFIC WAY. IN ADDITION, WE HAVE PROVIDED EACH OF YOU WITH A LIST OF YOUR FINANCIAL INTERESTS AND COVERED RELATIONSHIPS THAT WOULD POSE A CONFLICT FOR YOU IF THEY BECAME A FOCAL POINT OF THE COMMITTEE DLIB RAIS AND IF -- DELIBERATIONS AND IF THIS HAPPENS WE ASK YOU TO REDUCE YOURSELF AND LEAVE THE ROOM. GOVERNMENT EMPLOYEES ARE PROHIBITED FROM LOBBYING. WE MAY NOT LOBBY NOT AS INDIVIDUALS OR AS A COMMITTEE. IF YOU LOBBY IN YOUR PROFESSIONAL CAPACITY OR AS A PRIVATE CITIZEN IT IS IMPORTANT THAT YOU KEEP THAT ACTIVITY SEM RATE FROM YOUR ACTIVITIES ASSOCIATED WITH THIS COMMITTEE. KEEP IN MIND THAT WE ARE ADVISORY TO THE SECRETARY OF HEALTH AND HUMAN SERVICES. WE DON'T ADVISE CONGRESS. THANK YOU FOR BEING SO ATTENTIVE TO THE RULES OF CONDUCT. WE APPRECIATE IT VERY MUCH.

TERRIFIC. TO KICK US OFF ON THE FIRST SESSION ON THE IMPORTANCE OF FAMILY HISTORY IN HEALTH TO GET THAT STARTED I'M GOING TO INTRODUCE FRANCIS COLLINS. WE HAVE TO BE CONCERND THAT FRANCIS FLEW ON THE RED EYE ALL NIGHT SO WE ARE IN GREAT DANGER THAT HE WILL FALL OFF AT ANY MOMENT. SO ELLEN AND DANIEL IF YOU WILL KEEP AN EYE ON HIM, WE WOULD ALL APPRECIATE IT. LFER.

THANKS FOR TELLING JUST ABOUT EVERYBODY ABOUT THAT, REED. THAT'S MUCH APPRECIATED. I PROBABLY WILL NEED THE SUPPORT. WELL, MY PLEASURE TO INTRODUCE ALLEN GUTTMACHER WHO IS GOING TO GIVE THIS PRESENTATION ON THE IMPORTANCE OF FAMILY HISTORY IN HEALTH. ALLEN HAS A DISTINGUISHED CAREER AS A PHYSICIAN IN THE AREA OF MEDICAL GENETICS AND PEDIATRICS FOR SOME TIME. HE WAS THE ONLY BOARD CERTIFIED MEDICAL GENETICIST IN THE STATE OF VERMONT AND RAN THE FIRST NEWBORN IN TNSIVE CARE UNIT IN THE STATE OF VERMONT. THE STATE OF VERMONT WENT INTO SEVERE MOURNING WHEN I RECRUITED HIM TO COME TO NIH BECAUSE AS YOU CAN IMAGINE THE CENSUS DROPPED RATHER DRAMATICALLY IN TERMS OF THESE KINDS OF CAPABILITIES. HE HAS BECOME AN ESSENTIAL PART OF WHAT WE'RE TRYING TO DO IN THE GENOME ARENA AND RUNS OUR OFFICE OF POLYEDUCATION, COMMUNICATION AS WELL AS A HOST OF OTHER ISSUES AND HE HAS BEEN THE POINT PERSON IN OUR DISCUSSIONS WITH THE SURGEON GENERAL ABOUT A PARTICULAR INITIATIVE ON FAMILY HISTORY THAT I THINK HE IS GOING TO TELL YOU SOMETHING ABOUT. I WOULD ALSO JUST LIKE TO SAY BECAUSE IT HAPPENS TO BE THE VERY DAY WHERE THIS IS BEING ANNOUNCED THAT ALLAN HAS BEEN ELECTED TO THE INSTITUTE OF MEDICINE AS OF TODAY. CONGRATULATIONS, ALLAN. [ APPLAUSE ]

WHEN FRANCIS SAID HE WANTED TO INTRODUCE ME I KNEW THAT THERE WAS SOME WAY THAT HE WAS GOING TO TRY TO EMBARRASS ME. SINCE I RECENTLY INTRODUCED HIM I THOUGHT IT MIGHT BE WORSE THAN THAT. THANK YOU. THIS IS AN IMPORTANT ISSUE AND IN FACT THE SURGEON GENERAL HAD HOPED TO BE HERE TO BE ABLE TO GIVE THIS TALK. HE IS SORRY THAT BECAUSE OF ANOTHER COMMIT NT HE COULDN'T BE MERE. I'M VERY SORRY THAT HE COULDN'T BE HERE. I HOPE YOU WON'T BE TOO SORRY THAT BECAUSE OF ANOTHER COMMITMENT HE COULDN'T BE HERE TO TALK ABOUT A TRANSDEPARTMENTAL INITIATIVE THAT THE SURGEON GENERAL IS SPEAR HEADING AND THAT HAS TO DO WITH FAMILY HISTORY. SO FIRST I THOUGHT I WOULD TALK A LITTLE BIT ABOUT THE IMPORTANCE IN FAMILY HISTORY AND HET HEALTH. I REALIZE THAT THIS WILL BE LARGELY PREACHING TO THE CHOIR BUT I WILL END THAR IS MONAR IS SERMON. IF IN IS THE AGE OF GENOMES AS WE TRUMPET IT WHY SHOULD FAMILY HISTORY BE IMPORTANT. IT SEEMS SORT OF OLD FASHIONED. THE KIND OF THING YOU MUST JUST HEAVEN FOR BID USE A PENCIL AND PIECE OF PAPER ABOUT AND NOT THAT SOPHISTICATED GENOMIC TOOL, SET RATE.

WOO WE KNOW IN THE AGE OF GENOMES MOST DISEASES ARE DUE TO MULTIPLE GENES AND VAI.AL FACTORS. WE KNOW THAT BUT WHAT DO WE DO WITH IT? REMIND OURSELVES THAT TODAY EVERY PATIENT THAT IS SEEN HAS AVAILABLE I A FREE, I WOULD UNDERSCORE FREE SINCE THAT IS UNUSUAL MEDICINE PERSONALIZED TOOL THAT CAPTURES MANY OF THOSE ENVIRONMENTAL AND GENETIC INTERACTIONs AND CAN SERVE AS A TOOL FOR INDIVIDUALIZED DISEASE PREVENTION. THAT TOOL, OF COURSE, WHICH HAS STOOD THE TEST OF TIME IS THE OTHER THING TO BE SAID FOR IT IS THE FAMILY HISTORY. NOW, EVEN THOUGH WE WILL, OF COURSE, CONTINUE TO GAIN IMPORTANT NEW GENOME TOOLS IN THE YEARS AHEAD AND THOSE ARE THE KINDS OF THINGS THAT THIS COMMITTEE HAS BEEN THINKING ABOUT AND THEIR IMPACT ON HEALTHCARE FAMILY HISTORY IS GOING TO REMAIN RELEVANT FOR MANY YEARS TO COME AND IN FACT IT WILL BECOME MORE USEFUL BECAUSE IT HAS TO DO WITH SUCH VARIED HEALTH CONCERNS AS YOU SEE HERE, HEART DISEASE, BREAST CANCER, OH VAIVIAN CANCER. OSTEOPOROSIS. ASTHMA, TYPE TWO TIE DIABETES. YOU CAN GO ON AND ON MOST OF THE CAUSES OF MORED MORBIDITY AND MORTALITY THAT WE HAVE FAMILY HISTORY CAN CONTRIBUTE TO OUR UNDER STANDING OF THEM AND OUR APPROACH TO INDIVIDUAL PATIENTS. YET, NONETHELESS, MOST PEOPLE, MANY PEOPLE CERTAINLY ANYWAY ARE UNAWARE OF RELATIVE HISTORIES AND MANY OF US UNDERUTILIZE THIS INFORMATION ADVISING PATIENTS ABOUT HOW TO MAINTAIN GOOD HEALTH. FOR INSTANCE, YOU CAN USE FAMILY HISTORY INFORMATION TO EAFFECT THE WAY THAT YOU DO POPULATION SCREENING FOR ALL OF THESE DIFFERENT KINDS OF CONDITIONS. A LARGE ARRAY OF CONDITIONS TO WHICH FAMILY HISTORY IS PERTINENT. AND THEN BEYOND SCREENING IN TERMS OF OUR MANAGEMENT OF VARIOUS CONDITIONS AGAIN A LARGE SLOUGH OF CONDITIONS FOR WHICH WE HAVE GOOD DATA TO SHOW THAT FAMILY HEALTH HISTORY CAN, IN FACT, MAKE A DIFFERENCE IN MANAGEMENT. SO IF THIS IS SO USEFUL, WHY AREN'T HEALTH PROFESSIONALS USING A MORE CONSISTENTLY AND MORE EFFECTIVELY AND ALL OF US WHO HAVE A CLINICAL BACKGROUND WOULD BE EMBARRASSED TO TALK ABOUT THE WAY WE INDIVIDUALLY USED THE FAMILY HISTORY BUT WOULD CERTAINLY BE EMBARRASSED TO TALK ABOUT HOW ALL HEALTHCARE PROVIDERS IN GENERAL OUR PROFESSIONS TEND TO DO THAT. I THINK ONE BAR IS THAT CLINICIANS TEND TO UNDERESTIMATE THE ACTUAL UTILITY OF THE FAMILY HISTORY. THE WAY THAT WE CAN GET PAST THAT HUMP I THINK IS BETTER TEACHING AND MORE PERVASIVE ROLE MODELING OF THE USE OF THE FAMILY HISTORY. THOSE OF US WHO HAVE PARTICULAR BACKGROUND IN THINKING ABOUT FAMILY HISTORY AND USING IT IN HEALTHCARE OR CAN DEMONSTRATE TO OTHERS HOW IT WOULD BE HELP E. HELPFUL I THINK THE MESSAGE WOULD SPREAD MORE EFFECTIVELY. ANOTHER SIGNIFICANT FACTOR AND, OF COURSE, BECOMES MORE SIGNIFICANT WITH EACH YEAR'S HEALTHCARE CHANGES IS THE INSUFFICIENT TIME REALLY IN THE CLINICAL SET SETTING AFTER OFTEN OBTAIN, ORGANIZE AND AND LIES THE FAMILY HISTORY. IT IS ONE THING TO SAY FAMILY HISTORY CAN BE PERTINENT BUT IT TAKES A LOT OF TIME TO ACTUALLY COLLECT THE INFORMATION THEN TO BE ABLE TO SET IT DOWN IN SOME WAY THAT IS AVAILABLE IN THE FUTURE AND TO REALLY ANALYZE AND DO SOMETHING WITH IT. NOW, HOW DO WE GET PAST THAT HURDLE? WELL, THERE IS CREATIVE APPROACHES OUT THERE THAT PEOPLE HAVE BEEN WORKING NONE RECENT YEARS THAT I THINK ARE BEGINNING TO COME TO TRUE FRUITION THAT WILL HELP PACK TICKSERS WHO ARE -- PRACTITIONERS DO THIS. IF WE DO THAT IN FACT DO THE PATIENTS CARE ABOUT THIS. THERE ARE SOON TO BE PUBLISHED DATA THAT COME FROM THE CDC. THEY ARE NOT PUBLISHED YET SO I'M NOT GOING TO TELL YOU ABOUT THEM BUT YOU CAN LOOK FORWARD TO THEM SOON THAT SHOW THAT THE AMERICAN PUBLIC ACTUALLY IS WELL AWARE THAT FAMILY HISTORY IS IMPORTANT TO HEALTH. BUT DESPITE THAT, THAT RELATIVELY FEW PEOPLE IN THE GENERAL PUBLIC HAVE ACTUALLY EVER COLLECTED HEALTH INFORMATION FROM RELATIVES TO OBTAIN A FAMILY HEALTH HISTORY WHICH SUGGESTS THAT THERE, TOO, IS A BAR, AN OBSTACLE THAT NEEDS TO BE OVERCOME AND THAT IS THAT EVEN THOUGH PEOPLE ARE CONVINCED THAT FAMILY HISTORY CAN BE PERT FEND AND IMPORTANT FOR THEIR O -- PERTINENT AND IMPORTANT FOR THEIR OWN HEALTH THEY HAVEN'T ACTED ON THAT WHICH MEANS AGAIN THERE ARE EMPEDMENTS FOR THIS BEING DIFFICULT FOR FAMILIES TO DO.

WHAT CAN WE DO ABOUT THAT? SOMETHING THAT A NUMBER OF AGENCIES WITHIN THE DEPARTMENT HAVE BEEN TRYING TO DEAL WITH OVER THE LAST FEW YEARS AND THOSE INCLUDE THE SURGEON GENERAL'S OFFICE, HERSA, ARC. VERY IMPORTANTLY THE CDC AND VARIOUS PARTS OF THE NIH AS WELL.

WE HAVE COME TOGETHER TO -- THE SURGEON GENERAL AMERICAN FAMILY HEALTH INITIATIVE SO LET ME TELL YOU A LITTLE BIT ABOUT THIS INITIATIVE. THE GOALS OF THE INITIATIVE ARE, FIRST OF ALL, TO INCREASE THE AMERICAN PUBLIC'S AWARENESS OF THE IMPORTANCE OF FAMILY HISTORY AND HEALTH THOUGH WE AGAIN HAVE DATA THAT THEY ARE FAIRLY AWARE OF THIS ALREADY. BUT NOT SO TRUE IS TO GIVE THE AMERICAN PUBLIC TOOLS TO GATHER, UNDERSTAND EVALUATE AND USE FAMILY HISTORY TO IMPROVE HEALTH, TO INCREASE THE AWARENESS OF HEALTH PROFESSIONALS ABOUT THE IMPORTANCE OF FAMILY HISTORY. GIVE THE HEALTH PROFESSIONALS TOOLS TO BE ABLE TO GATHER, EVALUATE AND USE FAMILY HEALTH INFORMATION AND TOOLS TO COMMUNICATE WITH THEIR PATIENTS ABOUT FAMILY HISTORY.

GENETIC.

AS THEY BECOME MORE AVAILABLE, GENETIC TESTING IT WOULD BE A GOOD IDEA TO HAVE FOLKS BECOME FAMILIAR WITH SOME OF THOSE CONCEPTS BY USING THE OLD TRIED AND TRUE FAMILY HISTORY AND PREPARING BOTH THE AMERICAN PUBLIC AND HEALTH PROFESSIONALS IN WHICH WE BELIEVE THAT WOULD BE AN INTEGRAL PART OF REGULAR HEALTHCARE.

PLEASE PRESSING CALLED MY FAMILY HEALTH PORTRAIT. YOU SEE THIS IS THE BANNER FOR IT. AND THIS IS A DUMMY -- SOME WHAT WHAT IT WILL LOOK LIKE IF YOU LOOK CAREFULLY IT YOU WILL SEE IT SAYS MY FAMILY HEALTH PORTRAIT. THIS IS SUCH A A DUMMY IT HASN'T BEEN UPDATED TO REFLECT THE OFFICIAL NAME MY FAMILY HEALTH PORTRAIT. THIS IS GOING TO BE A WEB BASED TOOL. WHERE INDIVIDUALS AND FAMILIES WILL BE ABLE TO DOWNLOAD DIRECTLY TO THEIR COMPUTERS SO THAT THIS INFORMATION LIVES M ON THEIR COMPUTERS AND NOT ON SOME GOVERNMENT SITE WHICH WOULD BE ILLEGAL AMONGST OTHER THINGS AND ALLOW PEOPLE, NOT JUST ALLOW PEOPLE BUT GIVE PEOPLE A WE BELIEVE EASY INTERACTIVE KIND OF WAY TO GATHER THEIR FAMILY HEALTH INFORMATION. AND THEN ONCE ANY HAVE GATHERED IN FACT GIVE THEM GUIDANCE ABOUT WHAT THEY MIGHT DO WITH THAT INFORMATION. SO NOVEMBER THE 8th, MONDAY IN A FEW WEEKS THERE WILL BE A FORMAL ANNOUNCEMENT OF THE INITIATIVE AND THERE WILL BE THE RELEASE OF THE MY FAMILY HEALTH PORTRAITS WEBSITE AND THERE WILL BE A BIG EVENT DOWNTOWN AND SEVERAL AGENCIES WITHIN THE DEPARTMENT WILL BE COOPERATING IN THAT. WE ARE GOING TO HAVE SOME OTHER MEDIA AROUND THAT DATE SO WE ARE HOPING THAT YOU WILL HEAR A FAIR BIT ABOUT IT IN YOUR LOCAL MEDIA AT THAT TIME AS WELL AS NATIONAL MEDIA. THIS IS THE OFFICIAL LOGO OF THE THING. THERE WILL BE THE PRESS CONFERENCE AT THE NATIONAL PRESS CLUB ON NOVEMBER 8th TO ANNOUNCE THIS. ON THANKSGIVING DAY THIS IS THE FOCUS AND WHAT WILL BE TALKED ABOUT AT THIS PRESS CONFERENCE. THE IDEA IS TO MAKE THANKSGIVING DAY THE DAY WHEN FAMILIES GATHER TOGETHER TO EAT A LOT, TO WATCH THE PACKERS ON TV AND DO OTHER KINDS OF THINGS TORTION USE THAT FAMILY EVENT TO ACTUALLY TALK ABOUT FAMILY HISTORY AND TO GATHER FAMILY HISTORY INFORMATION. THE IDEA THAT THEY COULD USE IT THAT DAY AND GATHER IT BEFORE OR AFTERWARDS BUT THE TIME WHEN THE FAMILY IS REALLY TOGETHER WHEN YOU HAVE, YOU KNOW, AUNT GLADYS AROUND THAT CAN ACTUALLY TELL YOU ABOUT WHAT YOU THOUGHT YOU HEARD ABOUT UNCLE JOE TO GET MORE ACCURATE INFORMATION. THAT IS ANOTHER PROBLEM WITH DOING THIS IN THE OFFICE IT IS THAT OFTEN YOU HAVE THE PERSON THAT COMES IN HAS IMPRECISE INFORMATION. ALL THE CLINICIANS ARE NODDING THEIR HEADS, THAT IS THE EXPERIENCE OF ALL OF US AND WHEN YOU HAVE THE FAMILY GEARED AROUND IS THE BEST TIME TO GET MORE ACCURATE INFORMATION AND TO BE ABLE TO BUILD THAT OVER THE COURSE OF TIME WE ARE HOPING TO MAKE THIS AN AMERICAN ANNUAL EVENT THAT THANKSGIVING WOULD BE THAT DAY. WE HAVE ALL SEEN THAT PICTURE OF THE TRADITIONAL NORMAN ROCKWELL FREEDOM FROM WONT IS WHAT IT USED TO BE CALLED. THE WAY THAT I THINK OF IS NOW IS THAT NOW THAT WE FINISHED THE FAMILY HISTORILET EAT. THANKSGIVING IS THE DAY THAT BEFORE YOU SIT DOWN TO RAISE YOUR CHOLESTEROL LEVELS THAT YOU TALK ABOUT FAMILY HITS TORE R HISTORYAND GATHER THAT INFORMATION. THE INITIATIVE WILL CONTINUE THAT YEAR PAST THANKSGIVING. WE ARE INTERESTED TO HAVE OTHER INTERESTED PARTIES FEDERAL AGENAGENCIES AND NONFEDERAL AGENCIES. OTHER ORGANIZATIONS THAT WE HAD THAT WE ARE ALLOWED TO DO THAT. WE ARE HOPING IT THIS WILL BE SOMETHING THAT NOT JUST THE GENETICS COMMUNITY BUT OTHER COMMUNITIES AS WELL WILL PARTICIPATE IN AND SEE AS AN IMPORTANT KIND OF IDEA TO BRING THIS TOOL THAT WE REAL KNOW KNOW CAN MAKE A DIFFERENCE IN HEALTHCARE AND CAN BE FAIRLY EASILY ACCOMPLISHD THAT WE BE ABLE TO DO THAT IN A MUCH BETTER WAY. SO WITH THAT I'M GOING TO STOP. MR. CHAIRMAN, I DON'T KNOW IF THERE ARE TIME FOR ANY QUESTIONS OR COMMENTS IF FOLKS HAVE THEM. I WOULD BE HAPPY TO TAKE ANY.

WE ACTUALLY DO HAVE JUST A SECOND, THIS IS AN IMPORTANT PRESENTATION. LET ME TURN TO ED. I THINK HE HAS A COMMENT FIRST.

I WANTED TO COMMENT, I TEACH THE MEDICAL STUDENTS. I HAD THREE HOURS LAST WEEK WITH THEM AND I TOLD THEM THAT THIS WAS THE CHEAPEST BUT PERHAPS THE BEST GENETIC TEST THAT WE HAD TODAY. AND THE OTHER THING AS I WAS SHAKING MY HEAD BECAUSE I RECALLED THAT AS A GENETICIST, AS A BOARD CERTIFIED MEDICAL GENETICIST I WAS ALWAYS ASKING MY PATIENTS FOR THEIR FAMILY HISTORY AND I WAS REALIZING THAT I WAS ASKING THEM MORE THAN I COULD PROVIDE MYSELF AND SAT DOWN WITH MY MOTHER AND WENT OVER THE FAMILY HISTORY AND LEARNED QUITE A BIT ABOUT MYSELF THAT I HAD NOT KNOWN. AND TOO SOON THEREAFTER SHE DEVELOPED ALZHEIMER'S DISEASE SO IT WAS VERY IMPORTANT THAT WE WERE ABLE TO RECORD THAT INFORMATION AND STORED IN AWAY IN THE FAMILY BIBLE TO THEN BE UTILIZED BY GENERATIONS TO COME. DH IS AN EXTREMELY IMPORTANT TOOL I THINK TOO FEW OF US TAKE THE TIME TO REALLY GET THAT INFORMATION AND I WOULD ENCOURAGE EVERYONE HERE TODAY TO BE SURE THAT YOU CAN DO FOR YOUR FAMILIES WHAT WE AS GENETICISTS ASK YOUR PATIENTS TO DO FOR US.

ANY OTHER QUICK QUESTIONS OR COMMENTS?

ALAN, THANK YOU SO MUCH. LET ME ASK TWO FOLLOW-UPS BECAUSE YOU HAVE GOT TWO THINGS THAT I THINK WE NEED TO SORT OF GET SOME MORE INFORMATION ABOUT. FIRST IS THE WHATEVER IS GOING TO GO OUT ON THIS IN TERMS OF GENETICS AND LITERACY WHICH IS PART OF THIS, THE WHOLE IDEA OF WHY IS THIS IMPORTANT IN A GENOMIC AGE TO THE PUBLIC AND HOW DO YOU USE THIS INFORMATION WE SURE WOULD LIKE TO SEE THAT AND BENEFIT FROM WHATEVER IS BEING SENT OUT BECAUSE THAT MAY HELP US THROUGH SOME OF OUR EFFORTS TO IMPROVE THE PUBLIC LITERACY AROUND THE ISSUES OF GENETICS AND SO I THINK IT WOULD BE A GREAT FYI FOR US. SECONDLY, IF THERE IS ANY PART OF THIS TOOL IT IS THAT IS GOING TO BE USED AS PART OF ANY OF THE AGENCY'S EFFORTS AROUND INFORMATION TECHNOLOGY OR TECHNICAL MEDICAL RECORDS I THINK IT WOULD BE HELPFUL TO HAVE THAT AS A FYI FOLLOW-UP BECAUSE WE WILL WIND UP HAVING TO DEAL WITH THOSE ISSUES DOWNSTREAM SO IF THIS IS GOING TO BE INTEGRATED IN ANYWAY INTO THE NEW HEALTH INFORMATION TECHNOLOGY EFFORT THAT ARE COMING OUT OF THE GOVERNMENT IT WILL BE INTERESTING TO SEE.

CERTAINLY, WE WELCOME THE OPPORTUNITY TO KEEP THE COMMITTEE AWARE OF THIS AND ALSO TO ASK INPUT FROM THE COMMITTEE AND THROUGH THE COMMITTEE OF THE VARIOUS FOLKS AT THE COMMITTEE IS CONNECTED TO BECAUSE AGAIN THIS IS THE FIRST STAGE OF WHAT WE HOPE WILL BE A LONG-TERM KIND OF INITIATIVE SO WE WOULD BE VERY HAPPY, FOR INSTANCE, WE ARE DEVELOPING NOT JUST COMPUTER-BASED BUT ALSO FAMILIAR NETS AND THOSE KINDS -- PAM PAMPHLETS THAT WE WOULD LIKE ORGANIZATION DISTRIBUTING THOSE. WE ARE DEVELOPING MANY OF THESE THINGS FOR INSTANCE THE COMPUTER BASED TOO I SHOULD TELL YOU WILL BE AVAILABLE NOT JUST IN ENGLISH BUT ALSO IN SPANISH BEFORE THANKSGIVING SO WE WOULD LOVE THE OPPORTUNITY TO INTERACT WITH THE COMMITTEE AS THIS GOES FORWARD.

TO BRING THIS TO CLOSURE, LET ME OFFER THREE QUICK BOTHS THAT WE MIGHT BE ABLE TO DO IF WE CAN DO THIS WITHOUT UNLESS THERE IS MAJOR CONTROVERSY WE MIGHT TRY TO GET AN ENDORSEMENT FIRST THAT WE ENDORSE THE IMPORTANCE OF FAMILY HISTORY AS A TOOL OF FAMILY MEDICINE APROPOS ED'S COMMENTS. THAT WE REPORT TO THE SECRETARY THAT WE ARE ENCOURAGED TO SEE HHS AGENCIES WORKING TOGETHER TO BRING THIS TO FRUITION AND THIRD THAT WE WOULD ENCOURAGE THOSE AGENCIES THAT ARE NOT PART THIS OF TO GET INVOLVED SO THAT WE WOULD THE AT AT LEAST BE SUPPORT IB OF THIS WITH THOSE THREE RECOMMENDATIONS. IS THERE ANY DISCUSSION ABOUT THOSE THREE? EMILY?

I JUST WANTED TO ASK A QUESTION. ARE YOU GOING TO PROVIDE SOME KIND OF LIKE A MAILOUT SO YOU COULD TAKE A PAM NET OR SOMETHING AND MAIL IT TO YOUR ELDERLY RELATIVES AND ASK THEM AT THEIR LEISURE FOR THOSE THAT AREN'T COMPUTER LIT RATE AND ABLE TO DEAL WITH THAT TO SEND INFORMATION BACK?

THERE WILL BE A FAMILIAR PAMPHLET TO EXPLAIN FAMILY HISTORY AND HAS A TEMPLATE THAT YOU CAN RECORD INFORMATION THAT WE MADE AVAILABLE.

WITH THAT BY A SHOW OF HANDS, WOULD YOU SUPPORT ENDORSING THE IMPORTANCE OF FAMILY HISTORY AS A TOOL IN MEDICINE, THAT WE REPORT TO THE SECRETARY THAT WE'RE ENCOURAGED TO SEE HHS AGENT IS WORKING TOGETHER TO GET THIS DONE AND THIRD THAT WE WOULD ENCOURAGE OTHER AGENCIES TO GET INVOLVED AND SUPPORT THIS INITIATIVE? ALL THOSE IN FAVOR AYE. ANYBODY OPPOSED. IN TERRIFIC. FOR A FOLLOW-UP I HOPE WE DO GET THE TWO FOLLOW-UPS SO WE CAN SORT OF SEE WHAT ACTUALLY DOES GO OUT.

VERY GOOD.

THANK YOU.

THANK YOU, APPRECIATE IT.

ALL RIGHT, FOR THE NEXT PART OF OUR EFFORT WE ARE GOING TO DEVOTE FROM NOW UNTIL 12:45 ON A PRETTY SERIOUS DISCUSSION ON GENETIC DISCRIMINATION. YOU WILL REMEMBER THAT THIS IS A TOP PRIORITY FOR OUR COMMITTEE. WE HAVE WRITTEN TWO LETTERS TO THE SECRETARY URGING SUPPORT FOR THE ENACTMENT OF NED FEDERAL NONDISCRIMINATION LEGISLATION. AT OUR MARCH AND JUNE MEETINGS WE DISCUSSED THE QUESTION OF WHETHER THERE WERE ADDITIONAL EFFORTS THAT WE COULD TAKE TO INFORM THE DEBATE REGARDING FEDERAL LEGISLATION IN THIS AREA. THE UNITED STATES SENATE HAS SUBSEQUENTLY YOU NAN M UNANIMOUSLY PASSED A FIREARM DEEGENETICNONDISCRIMINATION BILL BUT THE HOUSE SUB COMMITTEE ON IMPLOWER RELATION HELD A HEARING ON IN THIS JULY WITHOUT FURTHER ACTION THAT WE ARE AWARE OF. THERE IS A SUMMARY OF THOSE HEARINGS IN THE TAB NO. FOUR. THE PURPOSE OF THIS SESSION IS TO GATHER ADDITIONAL PUBLIC PERSPECTIVES ON GENETIC DISCRIMINATION AND INFORMATION ABOUT THE NATURE, MAGNITUDE AND SCOPE OF THIS PROBLEM IN SOCIETY. THE SESSION WAS PLANNED AND ORIGINAORGANIZED BY OUR TASK FORCE. AGNES MASNY TERRIFIC AS CHAIR AND BARBRA HAS LAND AND EVELYN LEONARD AND ROBINSUE FREE FROHBOESE AND JOANNE BOFFMAN ALL WERE EXTRAORDINARILY INVOLVED IN THIS AND WE THANK THEM FOR IT. AMANDA, THANK YOU FOR YOUR LEAD STAFF WORK ON THIS. AND I ALSO WANT TO THANK THE MEMBERS OF THE PANEL FOR PARTICIPATING AND TAKING NOTE OF THE WRITTEN COMMENTS THAT HAVE BEEN SUBMITTED. THEY HAVE BEEN COME COMPILED IN A SEPARATE BINDER WHICH I HOPE YOU ALL HAVE. A COPY IS AVAILABLE FOR REVIEW AT THE VEG STRAIKS DESKS. DRK REGISTRATION DESKS. TO LEAD US THROUGH THIS, LET ME ININTRODUCE AGNES.

I WOULD ALSO LIKE TO THANK DOCTOR TUCKSON WHO IS GOING TO HELP COFFA SILL FATE AND THANK THEM FOR HELPING COORDINATE AND FOR AMANDA WHO HAS BEEN WORKING BY MY SIDE IN HELPING TO PULL ALL THIS TOGETHER AND MOST ESPECIALLY TO THANK ALL OF THE SPEAKERS WHO HAVE COME FROM FAR AND WIDE TODAY TO BE ABLE TO GIVE TESTIMONY TODAY SO THAT WE WILL BE ABLE TO DOCUMENT FOR THE RECORD THE EXPERIENCE OF THE PUBLIC HEALTH PROFESSIONALS AND OTHERS REGARDING THIS VERY IMPORTANT ISSUE OF HEALTH DISCRIMINATION, GENETIC DISCRIMINATION. SO AS DR. REED MENTIONED, WHAT LED UP TO FORMING THIS PARTICULAR TASK FORCE AND THE MEMBERS THAT HE ALREADY INDICATED HAVE BEEN PRESENTED AND THEN THE AS WAS MENTIONED IS THAT ONE OF THE REASONS WHY WE HAVE ACTUALRYLY ACTUALLY ESTABLISHED HAVING A PUBLIC HEARING TODAY IS THAT BOTS FROM THE PAST WE RECOGNIZED THAT THE EVIDENCE ABOUT GENETIC DISCRIMINATION AND PARTICULARLY THE FEAR OF GENETIC DISCRIMINATION HAS BEEN VERY HARD TO DOCUMENT AND THERE ARE VERY MANY REASONS THAT HAVE BEEN BROUGHT FORTH TO THE COMMITTEE REGARDING THE PUBLIC'S CONCERN ABOUT GENETIC PRIVACY AND PRESENTING THEIR INFORMATION IN LEGAL CASES IS STRE HARD TO DO. -- IS VERY HARD TO DO. THAT IS ONE OF THE REASONS WHY WE WANTED TO HAVE THIS HEARING AND ALSO BECAUSE TO DATE THERE HAS BEEN LACK OF SUFFICIENT EVIDENCE AND THIS LACK OF EVIDENCE HAS BEEN ACTUALLY BROUGHT UP AS ONE OF THE REASONS AS A BARRIER TO GOING AHEAD WITH LEGISLATION FOR ANTIDISCRIMINATION. SO AT THE 2004 JUNE MEETING WE DID DECIDE TO UNDERTAKE THIS PUBLIC HEARING IN ORDER TO PROVIDE THE SECRETARY WITH ADDITIONAL INFORMATION THAT MIGHT BE USEFUL IN ADDRESSING THE POTENTIAL OBSTACLES REGARDING GENETIC DISCRIMINATION AND MOVING IT FORWARD FOR LEGISLATION. SO THE PURPOSE OF THIS SESSION AS REED HAS ALREADY MENTIONED IS TO LEARN MORE ABOUT THE MAGNITUDE AND SCOPE AND NATURE OF THE GENETIC DISCRIMINATION THROUGHOUT SOCIETY AND TO PROVIDE ALL OF US WITH THIS PUBLIC FORUM TO BE ABLE TO BOTH HEAR THE TESTIMONY AND THEN TO BE ABLE TO DISCUSS THE ISSUES THAT WILL COME FORTH FROM THIS HEARING. AND THEN THE LAST STEP WILL BE FOR US AS A COMMITTEE TO THEN TO LOOK AT WHAT ARE THE NEXT STEPS THAT WE HAVE TO TAKE TO HOPEFULLY MOVE THE LEGISLATION FORWARD. SO WHAT WE ARE GOING TO BE DOING TODAY IS WE ARE ACTUALLY GOING TO HEAR FROM THREE PANELS. MEMBERS OF THE PUBLIC, HEALTH CARE PROVIDERS AND THEN ADDITIONAL STAKE HOLDERS AND THE PATIENT PANEL WILL CONSIST OF MEMBERS OF THE PUBLIC WHO HAVE EXPERIENCED GENETIC DISCRIMINATION OR WHO HAVE ALTERED THEIR HEALTHCARE BECAUSE THEY HAVE A CONCERN ABOUT GENETIC DISCRIMINATION EITHER FROM INSURANCE OR FROM EMPLOYMENT OR THOSE WHO HAVE HAD TO PAY OUT OF POCKET IN ORDER TO -- BECAUSE OF THEIR CONCERN FOR GENETIC DISCRIMINATION. WE ALSO TOOK TIME TO LOOK AT AS A TASK FORCE IN LOOKING ATGETING MEMBERS OF THE HEALTHCARE COMMUNITY PROVIDERS WHO HAVE THAT FIRST-HAND EXPERIENCE WITH THE PATIENTS HEARING THEIR CONCERNS ABOUT GENETIC DISCRIMINATION TO ALSO BE ABLE TO COME AND TESTIFY. SO AGAIN, HERE, WE HOPE TO HEAR FROM THE PROVIDERS ABOUT SOME OF THEIR PATIENTS WHO MAY HAVE ALTERED THEIR HEALTHCARE DECISIONS OR WHO HAVE NOT PARTICIPATED IN GENETIC RESEARCH BECAUSE OF GENETIC DISCRIMINATION AND OTHER CONCERNS THAT THEY HAVE REGARDING DISCRIMINATION. AND THEN THE THIRD PANEL WILL BE ADDITIONAL STAKE HOLDERS THAT WILL HOPEFULLY GIVE US AN ADDITIONAL PERSPECTIVE IN THIS FROM EMPLOYERS, FROM THE HEALTH INSURANCE PERSPECTIVE AND FROM THE SOCIETY AT LARGE AND THIS PRIMARILY THROUGH A REPRESENTATIVE FROM THE CENTER FOR GENETICS AND PUBLIC POLICY WHO OVER THE PAST SEVERAL MONTHS HAVE HELD TOWN MEETINGS ACROSS THE COUNTRY ON THE ISSUES OF GENETICS AND GENETIC DISCRIMINATION WAS ONE OF THE ISSUES. SO WE WILL BE HEARING THAT PARTICULAR PERSPECTIVE AS WELL. THE COMMITTEE AND THE SACGHS HAD REQUESTED WRITTEN PUBLIC COMMENTS THROUGH THE FEDERAL REGISTER NOTICE, THROUGH THE SACGHS WEBSITE, THROUGH THE MAJOR DISTRIBUTION LIST OF SACGHS AND THEN WE ALSO TARGETED SPECIFIC MEDICAL GROUPS LIKE THE AMERICAN COLLEGE OF OB VET SET IT RICKS AND GYNECOLOGY TO GO DIRECTLY TO THEIR MEMBERSHIP TO ASK ABOUT THIS PARTICULAR ISSUE WHETHER THEY AS PROVIDERS HAVE COME IN CONTACT WITH GENETIC DISCRIMINATION OR THE FEAR OF DISCRIMINATION FROM THEIR PATIENTS AND THEN ALSO VARIOUS LIST SERVES FROM HEALTH PROFESSIONALS, PHYSICIANS, NURSES AND GENETIC COUNSELORS TO REQUEST PUBLIC COMMENTS. SO FROM -- WE DID RECEIVE 43 PUBLIC COMMENTS. # 22 WERE FROM THE PUBLIC. 11 WERE FROM HEALTHCARE PROVIDERS. FROM PROFESSIONAL ORGANIZATIONS. AND ONE VERY NICE THOUGHTFUL TESTIMONY FROM DR.-- FROM REPRESENTATIVE LOUISE SLAUGHTER WHO HAS COSPONSORED THE HOUSE VERSION OF THE BILL 1910. SO WE GOING TO BEGIN THEN WITH THE MOST IMPORTANT PART IS ACTUALLY TO HEAR FROM THE PUBLIC AND WE ARE GOING TO START FIRST WITH THE PATIENT PANEL. AND WE ARE REALLY VERY FORTUNATE TO HAVE WITH US TODAY A PANEL OF 7 MEMBERS OF THE PUBLIC WHO WOULD LIKE TO SHARE THEIR PERSONAL STORIES AND EXPERIENCES AND THEIR OWN PERSPECTIVE ON GENETIC DISCRIMINATION. THEY COME TO US FROM ACROSS THE COUNTRY. AND WHAT I DOLL IS I WILL DO IS I WILL INTRODUCE THE WHOLE PANEL AS A WHOLE AND NOT INTRODUCE YOU AS YOU CAN JUST KIND OF GO IN ORDER ACROSS FROM THE TABLE. WE WILL ASK THE SPEAKERS THAT THEY WILL HAVE TEN MINUTES TO PRESENT THEIR PUBLIC TESTIMONY. WE WILL TRY TO KEEP TRACK OF THE TIME FOR YOU. AND THEN AFTER EVERYONE HAS HAD THE OPPORTUNITY TO PRESENT THEN WE WILL OPEN IT UP FOR QUESTIONS FROM THE ADVISORY GROUP AND THE EX OFFICIOS WILL HAVE AN OPPORTUNITY TO ASK ANY ADDITIONAL QUESTIONS AFTER THE END OF ALL OF THE TESTIMONY. OKAY? SO AGAIN, WE WOULD LIKE TO THANK AND WELCOME OUR FIRST PANEL WE HAVE HEIDI WILLIAMS IS FROM IS A CECELIA KENTUCKY. PHAEDRA MALATEK AND HERE WITH HER TWO SONS FROM CHICAGO, ILLINOIS. AREBECCA FISHER FROM OAKTON VIRGINIA. TONIA PHILLIPS FROM ROANOKE, VIRGINIA. PAULA FUNK FROM LITTLE ROCK, ARKANSAS. MARIA CAROLINA HEINSTROSA FROM WASHINGTON, D.C. AND PHIL HARDT FROM PHOENIX ARIZONA. SO WE ARE GOING TO TURN IT OVER TO YOU. SO, FAY TRA, PHAEDRA WOULD YOU BE WILLING TO START US OFF? HEIDI, YOU WANT TO START AND WE WILL GO DOWN THE LINE?

THANK YOU. MR. CHAIR MAN, MEMBERS OF THE COMMITTEE, MY NAME IS HIGH DEWILLIAMS AND MY CHILDREN JAIME 8 AND JESSE 10 WERE RECENTLY VICTIMS OF GENETIC DISCRIMINATION. IN AUGUST OF 2003, I SAW A COMMERCIAL ON TELEVISION ADVERTISING AFFORDABLE HEALTHCARE INSURANCE FOR INDIVIDUALS THROUGH HUMANA INCORPORATED. I CALLED THE TOLL FREE NUMBER AND TALKED WITH THE YOUNG WOMAN WHO QUOTE IMMEDIATE A PRICE FOR A POLICY THAT WOULD COVER BOFTH MY CHILDREN. I WAS TOLD THAT THE MONTHLY COST TO INSURANCE MY CHILDREN WOULD BE APPROXIMATELY $105 AND I IMMEDIATELY TOLD THE YOUNG WOMAN I WOULD LIKE TO COMPLETE AN APPLICATION SO THAT THE COVERAGE WOULD BEGIN AS SOON AS POSSIBLE. I WAS ASKED A SERIES OF QUESTIONS ABOUT MY CHILDREN INCLUDING WHETHER OR NOT THEY HAD A PREEXISTING CONDITION. HE RELAYED TO THE YOUNG WOMAN UNDER THE THREAT OF A FINE AND INCARCERATION FOR FALSIFYING INFORMATION THE FACT THAT MY CHILDREN WERE CARRIERS OF THE GENETIC DISORDER CALLED ALPHA ONE ANNA TRIP SEEN DEFICIENCY OR AAT. A LIVER DEFICIENCY THAT CAN PROGRESSIVELY AFFECT THE LUNGS OR LIVER OR BOTH BUT THAT MY CHILDREN UNLIKE THEIR MOTHER WHO IS LUNG SYMPTOMATIC WOULD NEVER SUFFER FROM ANY ASPECT OF THE DISORDER. THE YOUNG WOMAN WHO WASN'T QUITE SURE WHAT TO DO WITH THIS INFORMATION ASK NEED HOLD ON THE LINE WHILE SHE CONTACTED HER SUPERVISOR. AS I SPOKE WITH HER SUPERVISOR I AGAIN EXPLAINED HOW MY CHILDREN WERE ONLY CARRIERS OF THE AAT GENE AND THIS MY CHILDREN THEMSELVES WOULD NEVER SUFFER FROM ANY ASPECT OF THE DISORDER AS I AM SUFFERING AND THEY ARE EXCEPTIONAL AACTIVE AND HEALTHY CHILDREN. AGAIN I WAS TOLD TO HOLD THE LINE BECAUSE AS THIS GENTLEMAN WAS UNCOMFORTABLE WITH THE INFORMATION I IMPORTED HE NEEDED TO CONTACT HIS SUPERVISOR. I, ONCE AGAIN, RELAYED THE INFORMATION ABOUT ALPHA ONE AND HOW NYE CHILDREN WERE ONLY CARRIERS. TO BE BORN WHAT IS CONSIDERED SYMPTOMATIC YOU MUST HAVE TWO PAIR RENS WHO ARE AT LEAST CARRIERS OF THE AAT GENE AND BE OF A CERTAIN FINE QUO FINE FOE PHENOTYPE. MY CHILDREN CAN ONLY BE CARRIERS AND AS RESEARCH SU SPORTS WILL NEVER BE SUSCEPTIBLE TO THE VARIOUS PROBLEMS SYMPTOMATIC AAT SPACE INCLUDING LUNG AND LIVE FAILURE. ONCE THE SENIOR SUPERVISOR AND I FINISHED SPEAKING I WAS GIVEN BACK TO THE YOUNG WOMAN WHO INITIALLY TALKED TO ME AND I WAS TOLD THAT I WOULD RECEIVE A REPLY TO MY CHILDREN'S APPLICATION FOR HEALTH INSURANCE WITHIN 24 HOURS. AFTER FIVE DAYS OF WAITING I KNEW IN STINGTIVELY THAT THERE HAD BEEN A PROBLEM WITH MY CHILDREN'S APPLICATION. I RECEIVED A LETTER TWO DAYS LATER EXACTLY ONE WEEK AFTER THE PHONE APPLICATION STATING THAT MY CHILDREN WERE BEING REJECTED FOR THEIR HEALTHCARE INSURANCE FOR HUMANA INCORPORATED DUE TO THEIR AAT STATUS AND FOR MO OTHER REASON. AFTER MUCH SELF-RECRIMINATION I SHARED MY WOES WITH THE ALPHA ONE INTERNET COMMUNITY THAT IS EXTREMELY CONCERNED ABOUT GENETIC GENETIC DISCRIMINATION. LEADING MY FEARS FROM MY CHILDREN HAVING ABOUT BEEN TISE REJECTED FROM HEALTHCARE COVER ANDAGE. NANCY BI ELO HEARD ABOUT MY PROBLEMS WITH HUGH HAN MA INCORPORATED AND APPROACHED ME ABOUT PUBLICLY COMING FORWARD WITH MY STORY THROUGH THE AUSSIES OF THE PUBLIC A-- AUSPICES OF THE PUBLIC ALLIANCE. A WONDERFUL AND KNOWLEDGEABLE AAT DOCTOR AN APPEAL TO THE AUGUST 2003 LETTER A LETTER WHICH REJECTED MY CHILDREN FOR HEALTH INSURANCE COVERAGE ON THE BASIS OF THEIR GENETIC STAT US WAS DRAFTED AND SENT TO HUMANA INCORPORATED. ENCLOSED WITH THE LETTER WAS RESEARCH NAVTION FROM THE NATIONAL INSTITUTE OF HEALTH AND THE ALPHA ONE FOUNDATION SUPPORTING MY ARGUMENT THAT JESSE AND JAMIE AS CARRIERS WOULD NOT BECOME CARRIERS OF ALPHA ONE AND BOTH WOULD REMAIN FREE OF THE AAT DEBILITATING DESTRUCTIVENESS THROUGHOUT THEIR LIFETIME. IN FEBRUARY OF THIS YEAR I RECEIVED MY RESPONSE AFS WAS ONCE AGAIN, SHOCKED TO REED THAT MY CHILDREN WERE WHERING REJECTED FOR HEALTH HEALTHCARE COVERAGE ONLY ON THE BASIS OF THEIR AAT AND NOTHING MORE. IT WAS ONLY AFTER THEY WERE APPROACHED BY A WELL KNOWN NEWSPAPER THAT THEY OFFERED MY CHILDREN FULL COVERAGE UNDER THEIR COMPANY PRO VATTED PRO RATED FROM AUGUST 2003 AND PAID IN FULL THROUGH 2004 BY HUMANA INCORPORATED THEMSELVES. FORTUNATELY FOR ME, A COMPANY THAT DECIDED EVERYBODY IS ENTITLED TO AFFORDABLE HEALTH INSURANCE COVERAGE AND NOT HUMANA COVERS MY CHILDREN. NO ONE SHOULD HAVE TO FORCE AN INSURANCE COMPANY TO COVER PERFECTLY HEALTHY CHILDREN. IN FACT, I DON'T BELIEVE IT SHOULD HAVE MATTERED WHAT THEIR GENETIC STAT US WAS TO BEGIN WITH. WE ARE ALL VIABLE MEMBERS OF A COMMUNITY WITH CONTRIBUTIONS TO MAKE AND SHOULDN'T HAVE TO BE AFRAID THAT OUR GENETIC ANOMALIES IN WHATEVER WERE FORM THEY ARISE WILL BE HELD AGAINST US. I SHOULD NOT HAVE HAD TO SPEND THE BETTER PART OF 6 MONTHS WONDERING IF THE DECISION TO HAVE THE GENETIC STATUS VERIFIED BY THEIR PEDIATRICIAN WAS A HUGE MISTAKE. I SHOULD NOT HAVE TO WONDER IF MY CHILDRENS IF GENETIC STAT US IS GOING TO FOLLOW THEM INTO THE WORK FORCE AND AWN MAKE THEM UNABLE TO BE PLOYED IN THEIR CHOSEN FIELDS. HUMANA INCORPORATED MID ME FEEL GUILTY AND ASHAMED FOR HAVING TO KNOW MY CHILDREN'S AT THAT TIME TUS. FURTHER MORE THEY MADE ME FE GUILTY FOR NEEDING A PARENT'S PEACE OF MIND. THERE IS A CURRENT FEAR REVERB RATING THROUGHOUT THE GENETIC COMMUNITY. IT IS A FEAR THAT FORCES MANY WITHIN THE PARTICULAR COMMUNITY TO ACCEPT WHICH SHOULD BE UNACCEPTABLE. DISCRIMINATION BY GENETIC STATUS. MANY PEOPLE ARE AFRAID TO COME FORWARD AND FIGHT FOR RIGHTS TO EMPLOYMENT AND HEALTH INSURANCE COVERAGE BECAUSE THEY ARE AFRAID OF THE REST DISTRIBUTION THAT MIGHT NOT ONLY BE TAKEN AGAINST THEM BUT TAKEN AGAINST THEIR FAMILIES AS WELL. THEREFORE IT IS BECAUSE OF THE CALLOUS TREATMENT OF M CHILDREN AND THE COUNTLESS OTHERS BEFORE THEM THAT I WANT TO MAKE SURE THAT THIS SORT OF POLICY PRACTICE NEVER HAPPENS TO ANY ONE AGAIN. I WANT TO NEVER AGAIN EXCHANGE E-MAILS WITH SOMEONE PHASED OUT OF A POSITION DUE TO HER GENETIC STATUS. I NEVER AGAIN WANT TO HEAR THE STORY OF SOMEONE WHO HAS BEEN DENIED HEALTHCARE COVERAGE, HAD THE HEALTH INSURANCE COVERAGE CANCELLED AND THEN PASSED EVER FOR PRO MOTION, DEMOTED, FIRED OR SIMPLY NOT HIRED DUE TO GENETIC STATUS. NATIONAL LEGISLATION THAT WOULD MAKE IT ILLEGAL FOR INSURANCE COMPANIES AND EMPLOYERS TO USE ONSOMEONE'S GENETIC AGAINST THEM HAS BEEN INTRODUCE. ONE YEAR LATER THIS IMPORTANT PIECE OF LEGISLATION THAT WOULD PROTECT MANY AMERICANS IS STILL STRANDED IN THE HOUSE OF REPRESENTATIVES IS. AS EACH DAY PASSES AND THE GENETIC COMMUNITY WAITS FOR THE HOUSE TO BRING THIS FOIL A BILL TO A VOTE SCORES OF PEOPLE ARE BEING PERCENPERSECUTED ON THE BASIS OF THEIR GENETIC STATUS CONTRIBUTION IT IS REPRESENT REHENCIBLE THAT ANY TYPE OF DISYIP NATION EXISTS AND MUST BE LEGISLATE THE AGAINST. IT MUST BE ERADICATED IN ANY FORM THAT THIS IS FOUND BEFORE ITS DESTRUCTIVE FORCE HAS HAD THE CHANCE TO HARM ANYBODY ELSE. FINALLY, MY FAMILY AND I WERE EXTREMELY LUCKY. WE HAD THE BACKING OF SEVEN RAL PEOPLE AND ORGANIZATIONS TO HELP US FIGHT OUR BATTLE IN THE WAR AGAINST GENETIC DISCRIMINATION THAT VERY FEW PEOPLE IN THE GENETIC COMMUNITY WIN. ONLY THROUGH LEGISLATION AND EDUCATION WILL GENETIC DISCRIMINATION LOOSEN ITS HOLD ON A COMMUNITY OF PEOPLE WHO ARE SUFFERING FROM ITS DEVASTATEING EFFECTS. THANK YOU.

THANK YOU, MS. WILLIAMS FOR YOUR VERY POWERFUL TESTIMONY. NOW, WE WILL HEAR FROM PHAEDRA MALATEK.

GOOD MORNING. THANK YOU FOR GIVING ME THE OPPORTUNITY TO SFEEK WITH YOU TODAY. MY NAME IS PHAEDRA MALATEK. A WIFE, MOTHER, SISTER, DAUGHTER AND FRIEND OF PEOPLE WHO CARE VERY DEEPLY ABOUT WHAT WE ARE DOING HERE TODAY. I LIVE IN AURORA, ILLINOIS, WITH MY HUSBAND AND TWO SONS. MY PRY PERIOCCUPATION ISED A NCT FACULTY AT TWO LOCAL COMMUNITY COLLEGES. I'M HERE TODAY TO TALK TO YOU ABOUT THE HOPE THAT LIES IN GENETIC TESTING MORE SPECIFICALLY THE GENETIC INFORMATION NONDISCRIMINATION ACT AS 1053 AND I TALK ABOUT HOPE BECAUSE AS RALPH WALDO EMERSON SAYS WE JUDGE OF A MAN'S WISDOM BY HIS HOPE AND TODAY I'M FEELING PRETTY WISE. FOR ME, GENETIC TESTING AND THE PROTECTION OFFERED BY S1053 CAN BE COMPARED IN AN ANALOGY TO WEATHER TRACING OR STORM PREDICTION. EMERGENCY IF YOU WILL THAT WE HAD NO KNOWLEDGE OF THE STORMS THATHAT RECENTLY SWEPT THROUGH THE MORCAKCAKE CINCINNATI. NOW, IMAGINE NEVER HAVING ANY INFORMATION ABOUT ANY STORM EVER. WELL, I THINK THAT IS -- THAT OUR UNDERSTANDING AND CONSIDERATION OF GENETIC TESTING CAN BE COMPARED TO THOSE WHAT IFS. WHAT IF PEOPLE WERE GIVEN THE KNOWLEDGE OF THE POTENTIAL STORMS IN THEIR LIVES? HOW WOULD BE THEY ABLE TO PROTECT THEMSELVES? WHAT WOULD SERVE AS THE PLYWOOD FOR THE WINDOWS AND WHAT EVACUATION ROUTES WOULD BE MADE AVAILABLE TO THEM AND MORE IMPORTANTLY HOW MANY LIVES WOULD BE SAVED? THAT REALLY IS THE QUESTION, ISN'T IT? HOW MANY LIVES CAN BE SAVED THROUGH WHAT WE ARE DOING HERE AND THROUGH THE ENACTMENT OF S1053. CONTINUING THE STORM ANALOGY, CONSIDER A SITUATION WHERE YOU KNOW THAT IS STORM IS COMING OR MAY COME AND YOU TAKE THE PRECAUTIONS SUCH AS BOARDING UP YOUR WINDOWS AND PUTTING THE LAWN FURYK FUHR IN FURNITURE IN THE POOL BUT YOU ARE UNABLE TO GET INSURANCE BECAUSE A STORM MAY COME. YOUR NEIGHBOR HAS NO KNOWLEDGE OF THE STORM AND DOESN'T TAKE THE NECESSARY PLEA PRECAUTIONS. IF THE STORM DOESN'T HIT, EVERYBODY WINS. IF THE STORM DOES HIT THE INSURANCE COMPANY PROVIDES FULL FINANCIAL REIMBURSTMENT FOR THE NEIGHBOR'S SEVERELY DAMAGED OR LOST PROPERTY BUT THERE IS NO COVERAGE FOR YOUR PROPERTY NO MATTER HOW SMALL OR LARGE THE LOSS. IT SEEMS TO ME THAT THAT IS WHAT WE ARE TALKING ABOUT WIT GENETIC DISCRIMINATION. A SITUATION IN WHICH NO ONE WINS AND EVERYONE LOSES. THOSE WITH ADVANCE WARNING ARE ACTUALLY HARMED RATHER THAN HELPED BY THE KNOWLEDGE THEY POSSESS. AN WERE INSURANCE COMPANIES AND THOSE WITHOUT ADVANCED KNOWLEDGE SUFFER EVEN LARGER LOSSES BECAUSE THEY HAVE BEEN GIVEN THE KNOWLEDGE TO PROTECT THEMSELVES. IF FAIR WARNING IS GIVE GIVEN TO ALL PARTIES THE PEOPLE ABLE TO PROTECT THEMSELVES AND THE INSURANCE COMPANIES AGREE TO BE AT RISK FOR ANY LOSS SUFFERED ALL HAVE A LARGER MEASURE OF PROTECTION. THOSE INFORMED CAN BE PROACTIVE AND TAKE PROPHYLACTIC MEASURES OR BE MONITORED MORE CLOSELY INCREASING THE ABILITY TO AVOID HAVING A DISEASE OR HAVE A DETECTED IN THE MOST EARLIEST TREATABLE AND SURVIVABLE STAGES. AS WE ALL KNOW THAT NOT ONLY SAVES LIVES BUT DRAMATICALLY DECREASES THE COSTS TO EMPLOYERS, INSURERS AND THE INDIVIDUALS. A STORM SUCH AS THIS HIT MY LIFE A NUMBER OF YEARS AGO. IN 1991 MY FARE 1991 FATHER GATHERED TOGETHER CHILDREN, NIECES, SIBLING LINGS, COUSINS TO DISCUSS A DISEASE HE HAD BEEN ZING DIAGNOSED WITH. IS IT IS REFERRED TO AS IRON OVERLOAD. MY FATHER HAD BEEN EXHIBITING SYMPTOMS PRIOR TO DIAGNOSIS INCLUDING ARTHRITIS, HEART ARITH MARRHYTHMIA AND CHANGE A SKIN TONE. AT THE SAME TIME THE PHYSICIANS CONJECTURED THAT MY GRANDFATHER AND GREAT GRANDFATHER MAY HAVE ALSO CARRIED AND SUFFERED THE EFFECTS OF THE DISEASE. WITHIN A YEAR OF THE MEETING MY FATHER SUFFERED A HEART ATTACK AND WITHIN TEN YEARS HAD DIED FROM THE DISEASE. SINCE MY FATHER'S DIAGNOSIS, TWO OF MY SIBLINGS DEVELOPED COMPLICATIONS OF THE DISEASE. NONE OF THEM, MY FATHER OR MY SISIBLINGS HAVE HAD GENETIC TESTS FOR HEMOCROW MATOSIS. BECAUSE OF MY FAMILY H S HISTORY AND THE FACT THAT IS IT IS THE MOST COMMON INHERITED DISEASE IN THE UNITED STATES. MY HUSBAND AND I ARE CONCERNED FOR THE HEALTH OF MY TWO CHILDREN. MITCHELL AND TREVOR THROUGHOUT THEIR LIVES WE RECEIVED CONFLICTING INFORMATION ON HOW TO APPROACH THEIR RISK FOR HEMOCROW MOHEMOCROW MA MOW SIS. WE WERE TOLD TO CONSTANTLY MONITOR THEIR DIET. ALL OF THIS MAY HAVE BEEN GOODED A VIS, NONE OF IT REPLACES KNOWING THEY CARRIED THE MUTATION FOR THE DISEASE THAT CONTRIBUTED TO MY FATHER'S DEATH. WITH THAT KNOWLEDGE WE COULD HAVE TAKEN PROVEN MEASURES TO LESSON THE IMPACT, THE PREDISPOSITION FOR THIS DISEASE MIGHT HAVE ON THEIR LIVES. LIKE STORM PREDICTING AND TRACKING CAPABILITIES GENETIC TESTING SEEMS TO OFFER AN OPPORTUNITY TO LEARN MORE ABOUT THE CONSTITUTION OF DISEASES AND THEIR POTENTIAL SERIOUS DAMAGE. IT CAN HELP US TRACK THE PROGRESSION OF THE DISEASE AS WELL AS DETERMINE OR EVEN DETERMINE TREATMENT OR EVEN PROTECTIVE MEASURES TO AVOID THE STORM THAT MAY RESULT FROM A GENETIC MUTATION. FOR MY CHILDREN THIS COULD BE LIFE ALTERING INFORMATION. ALTERING IN THAT IT WILL DECREASE THE LIKELIHOOD THAT THEY WILL BE INCAPACITATED BY HEMOC HROMATOSIS. IT CAN MEAN THE DIFFERENCE BETWEEN FOE FA LACTIC TREATMENT AND THE STARK CONTRAST OF THE OFTEN FEW TILE AND VERY PAINFUL DEATH PROLONGING TREATMENTS. THROUGHOUT THE RECORDED HISTORY OF HURRICANES EXPERIENCES HAVE GONE FROM STORMS THAT CAME OUT OF NO WHERE AS RECENTLY AS A HUNDRED YEARS AGO TO THOSE WE WERE ABLE TO TRACK MINUTE BY MINUTE 100 DAYS AGO. THE DRAMATIC CHANGE IS NOT THE RESULT MUCH THE DECREASE IN THE POWER OF THE STORM BUT RATHER AN INCREASE IN THE TECHNOLOGY AND OUR UNDERSTANDING OF HURRICANES. ALONG THE SAME LINES TECHNOLOGY AND ADVANCES IN THE AREA OF GENETIC TESTING CAN SIMILARLY PROVIDPROVIDE PREDICTABILITY AND GREATER LEVEL OF PROTECTION FOR THOSE AT RISK. THAT RISK OR EVEN THE KNOWLEDGE MUCH THE POTENTIAL RISK CAN BE PROTECTED THROUGH S105 # 3. WHILE THE TECHNOLOGY SEEMS TO BE IN PLACE OR AT LEAST ADVANCING AT A RELATIVELY RAPID CLIP, THE SOCIAL AND ECONOMIC PROTECTIONS ARE NOT. AS IT STANDS RIGHT NOW, IF NYE CHILDREN UNDERGO GENETIC TESTING FOR HEMOCHROMEATOSIS THEY RISK NOT BEING ABLE TO OBTAIN HEALTH INSURANCE AND POSSIBLE DISCRIMINATION WHEN THEY RECEIVE PLOYMENT. WE ARE GIV GIVE AND CHOICE TO PROTECT THEIR HEALTH OR PROTECT THEIR LIVELIHOOD. IT TROUBLES ME THAT S1053 OFFERS PROTECTION THAT WOULD ELIMINATE THE NEED FOR MY HUSBAND AND I DO DECIDE SUCH A DIFFICULT THING AND IT HAS NOT BEEN BROUGHT TO A VOTE IN THE HOUSE OF REPRESENTATIVES. ALL OF THIS IS REMINISCE SENT OF THE SERIES OF CHOICES THAT WERE BEING MADE 40 YEARS AGO. IN THE LATE 50s AND EARLY 60s MY PARENTS FOUGHT DILIGENTLY FOR THE RIGHTS OF PEOPLE WHO WERE GENETICALLY DIFFERENT THAN THEM. THEY WERE NOT DIFFERENT IN THAT THEY WERE A HIGHER RISK OF ARE OBTAINING HEMOAGAIN TOE TESS SKWR S. THE CIVIL RIGHTS ACT ARE THERE TO PROTECT PEOPLE FROM DISYIP NATION BASED ON GENETIC MAKEUP THAT WE CAN SEE. A PERSON'S GENETIC MAKEUP THAT ISN'T VISIBLE SHOULD BE EQUALLY PROTECTED UNDER THE SAME TERMS AND CAN BE THROUGH S1053. IT IS REMARKABLE FOR ME TO REALIZE THAT THE WORK MY PAY NTS DID FOR THE CIVIL RIGHTS IN THE 1960s WERE NOT COMPLETE. HERE I AM WORKING ON THE SAME ISSUE EQUAL RIGHTS AND PROTECTION UNDER THE LAW NO MATTER THE GENETIC MAKEUP OF A PERSON. THE FACT THAT WE CAN LOOK INSIDE A DNA OF A PERSON TO KNOW MORE ABOUT THEM SHOULD NOT PRECLUDE THEM FROM THE PROTECTION THAT WAS FOUGHT FOR SO VALIANTLY. AS I SEE IT, GENETIC TESTING IS THE WEATHER TRACKING DEVICE OF HEALTH. JUST AS WE RELY ON WEATHER TRACKING TECHNOLOGIES TO PREDICT AND ALOUSE ALLOW US TO PROTECT OURSELVES FROM HURRICANES OR OTHER WEATHER RELATED WERE TOES I URGE YOU TO ALLOW US -- I URGE YOU TO ALLOW US TO DO THE SAME FOR GENETIC DISEASES. WE MUST MOVE FORWARD IN PROTECTING PEOPLE FROM THE POTENTIAL STORMS IN THEIR LIVES. YOU CAN DO THIS BY URGING SECRETARY THOMPSON AND MY REPRESENTATIVE SPEAKER HASTERT TO BRING IN BILL TO A VOTE IN THE HOUSE OF REPRESENTATIVES. I'M SURE YOU WILL AGREE WITH ME WHY I SAY THAT PROTECTING LIVES IS EQUALLY OR MORE IMPORTANT THAN PROTECTING PROPERTY. IF WE CAN, WE SHOULD AND S1053 WILL.

THANK YOU, MS. MALATEK. THAT WAS A BEAUTIFUL ANALOGY BETWEEN THE GENETICS AND STORM. WE WILL HEAR NEXT FROM REBECCA FISHER.

UI DON'T THINK I HAVE ANYTHING TO ADD TO THAT. IT SEEMS ALMOST LIKE PREACHING TO THE CHOIR BUT I WOULD LIKE TO THANK THE COMMITTEE FOR EVERYTHING THAT THE COMMITTEE MEMBERS HAVE DONE IN THE PAST TO ADDRESS ADDRESS GENETIC DISCRIMINATION CONCERNS. AND I HOPE THAT OUR REMARKS WILL HELP TO INFORM YOUR ACTIONS GOING FORWARD. IN A PROVOCATIVE OCTOBER EDITORIAL IN THE JURISDICTION DOWNAL OF SIGHNESS NOBEL LAWYER RATE WONDERS WHAT THE HEALTHCARE WILL BE LIKE IN 195 PERHAPS THE KEY YAITION OF A NEW PUBLIC HEALTH PARADIGM IN WHICH THOSE WHO HAVE A GENETIC PREDISPOSITION TO DISEASE WILL LEARN HOW TO TAKE EXTRA CARE. DOCTOR BRENNER NEED NT WAIT 50 MORE YEARS TO SEE THE PREDICTION REAPREDICTION REALIZED. THOSE THAT POSSESS THE RK1 ARE ALREADY TAKING EXTRA CARE. A RECENT STUDY ESTABLISHED THAT 67% OF WOMEN WITH THIS MUTATION ARE DIAGNOSED WITH BREAST CANCER BY THE TIME THEY ARE 50 YEARS OLD. BUT I HAVE A COUSIN WHO DIED OF IT WHEN SHE WAS 28. I HAVE A ANOTHER WHO IS BATTLING STAGE FOUR OH OVARIAN CANCER. HEY HAS A 4-YEAR-OLD. MY MOTHER HAD BREAST CANCER AT 35. HER MOTHER DIED OF OVARIAN CANCER AT 41. HER SISTER HAD BREAST CANCER AT 32. I WAS 31 WHEN I WAS DIAGNOSED WITH STAGE THREE BREAST CANCER. MY DAUGHTER A 21-YEAR-OLD IS IN THIS LINE, TOO. SHE TESTED POSITIVE FOR BRCA1 AND WILL HAVE TO LEARN HOW TO TAKE EXTRA CARE. THE CARE THAT KATIE WILL HAVE TO LEARN HOW TO TAKE INCLUDES NOT ONLY THE LOW FAT DIET SHE IS ALREADY EATING AND THE DAILY EXERCISE RIDGE REGIMEN IT INCLUDES MORE THAN THE BREAST SELF-CM SHE IS REQUIRED TO PERFORM MONTHLY AND BELIEVE ME I DO REMIND HER. IT GEESE BEYOND THE M RIS THAT SHE WILL RECEIVE AT AGE 25. DEMANDS THAT SHE LIKE ME AND LIKE EVERYONE IN OUR FAMILY WHO HAS THIS MUTATION HIDE, THAT IS HIDE, H-I-D-E HER ATHENS INFORMATION EVEN AND EPECS SPECIALLY FROM THOSE LIFE CARE PROVIDERS LIKELY TO HELP HERMAN NAG HER LIFE LONG PREDISPOSITION TO DISEASE ZWLA IS WHAT WE ARE REDUCED TO. HIDING INTEGRAL HEALTH INFORMATION IS THE ONLY FAILSAFE WAY TO AVOID DISCRIM THAT TORRE PRACTICES SUCH AS THE LOSS OF INSURANCE OR LOSS OR DENIAL OF EMPLOYMENT BECAUSE THERE IS NO COMPREHENSIVE FEDERAL LEGISLATION THAT PATENTLY FOR BIDS INSURANCE OR IMPLOWMENT INFORMATION ON THE BABASIS OF GENETIC DISCRIMINATION. SEEKING TO BAN DNA DISCRIMINATION ISN'T REALLY NECESSARY BECAUSE DISCRIMINATION SIMPLY DOESN'T EXIST. ACTUALLY, IT DOES EXIST. BUT THE FACT THAT IT EXISTS ONLY SPORADICALLY AND AND EX-DOATALLY IS THE FUNCTION OF THE NEWNESS OF THE TECH LOGY AND THE FACT THAT USEFUL GENETIC INFORMATION LIKE OURS IS NOT YET YOU YOU BIG WHAT TUS. AND OUT OF THE KIND PS OF THEIR HEARTS REMAIN DISINTERESTED IN THIS INFORMATION IN THE SAME WAY THAT THEY ARE LEGALLY OBLIGED TO REMAIN DISINTERESTED IN INFORMATION SUCH AS RACE, GENDER, CREED OR SEXUAL PREF RENCE. I KNOW FROM EXPERIENCE THAT INSURANCE COMPANIES DON'T WORK THIS WAY. WHEN I WAS SICK, I WORKED AS A MEDICAL LIE LIBRARIAN FOR A SMALL COMMUNITY HOSPITAL IN SOUTH, FLORIDA. THE HOSPITAL WAS SELF-INSURED. PAY ATEX ATTENTION TO THIS PART. THE HOSPITAL WAS SELF-INSURED AND A THIRD-PARTY ADMINISTRATOR MANAGED OUR INSURANCE PLAN. ABOUT A YEAR AFTER MY LAST TREATMENT I WAS SITTING AT MY TEVCEVDESKWHEN THE PHONE RANG. THE PERSON TOLD ME I WAS THE FOURTH PERSON SHE HAD BEEN TRANSFERRED TO AND SOMEONE SUGGESTD THAT PERHAPS I COULD GIVE HER THE INFORMATION SHE NEEDED. PERHAPS I CAN, I OFFERED. WELL, SHE BEGAN, I AM CALLING ABOUT REBECCA FIBBER. HER BONE MARROW TRANSPLANT EXCEEDED THE CALENDAR YEAR CAP LAST YEAR AND I'M CALLING TO FIND OUT IF THAT THE' GOING TO HAPPEN NEXT YEAR. I'M REBECCA FISHER I SAID AND I REALLY HOPE NOT. THIS EXPERIENCE TAUGHT ME SOMETHING. IT TAUGHT ME THAT THERE ARE PEOPLE WHO ARE PAID TO LOOK AT ME AND SEE NOT MY ABILITY TO CONTRIBUTE TO A COMMUNITY, NOT MY HONESTY, MY INTEGRITY AND MY FACE, NOT MY EDUCATION, HARD WORK AND SOCIAL CONSCIENCE, NOT BY FAMILY MEMBERS AND THE WAYS IN WHICH I HAVE HELPED EACH OF THEM SUCCEED, BUT DOLLAR SIGNS, COSTS, INCREASED LIABILITY, AND THE ODDS OF MY DYING AN EXPENSIVE DEATH. LET US FACE THE FACT THAT FINANCIAL INCENTIVES TO USE GENETIC INFORMATION ARE ALREADY PRESENT. THE WASHINGTON POST REPORTED LAST MONTH THAT PLOYER SPONSORED HEALTH INSURANCE PREMIUMS ROSE 11.2% THIS YEAR AND EXPECTED TO RISE 13% WITH THIS YEAR. WITH THESE INCREASES IN MIND AND NO ENJOINEDER AGAINST USING GENETIC INFORMATION TO PREDICT PHYT TYRE LOSSES IT IS FUTURE LOSSES IT AS FAILURE OF SEWARDSHIP SAND I FEEL TERRIBLE THIS THIS COMMITTEE HAS SENT LETTERS T SECRETARY THOMPSON REPEATEDLY WITHOUT ANY ACTION. IT IS A FAILURE OF STEWARDSHIP TO EXPECT K PS AND EMPLOYERS TO DO THE RIGHT THING AND WHEN THEY DON'T LAUGH IRK PRECIOUS MAN HOURS HEALTHCARE DOLLARS AND HIT GAGES COSTS TO UNDO THE DAMAGE. I FEAR FOR MY CHILDREN ESPECIALLY FOR MY DAUGHTER WHO MUST LIVE NOT ONLY WITH AN EXPONENTALLY HIGHER RISK OF DEVELOPING A TERMINAL DISEASE BUT ALSO WITH THE BURDEN OF NEVER KNOWING WHEN SHE WILL BE ASKED TO TAKE A GENETIC TEST FOR A CONDITION OF EMPLOY MMENT OR BE FIRED FROM A JOB BECAUSE SHE IS LIKELY GET BREAST CANCER OR BE DENIED HEALTH INSURANCE ON HER PREDISPOSITION TO DISEASE. WE LIVE IN A WORLD THAT HAS NO SAFETY NET FOR US. HPA IS NO PAN SEIA FOR ALL THAT AILS HEALTH PRIVACY. HPA ADDRESSES NONE OF THE WORK PLACE CONCERNS AND ERISA RULES EXEMPT PLOYER BASED HEALTH PLANS LIKE THE ONE AT THE SMALL HOSPITAL WHERE I WORKED FROM HAN DMANDATORY DOM COMPLYIANCE. IF MY BRICK BRCA1 HAD BEEN KNOWN AND HPA CONDITIONS HAD BEEN IN PLACE THE YOUNG WOMAN WOULD KO HAVE RECOMMENDED FROM HER SUPERIORS AND PROBABLY GOTTEN A HHBONUS HAD SHE DONE IT THAT I NOT BE EXTENDED FURTHER HEALTHCARE COVERAGE. A WHOPPING 45% OF AMERICANS WITH HEALTH INSURANCE THIS IS FROM STEVE DO YOU HUGH AT THE DEPARTMENT OF LABOR,, A WHOPPING 45%, FALL INTO IT. THE GENETIC INFORMATION OF EACH ONE OF THESE INDIVIDUALS TOGETHER WITH THE INFORMATION OF EVERY UNINSURED AMERICAN THAT'S ANOTHER 45 MILLION PEOPLE IS FAIR GAME. IN MY OPINION, GENETIC INFORMATION IS NO DIFFERENT FROM ANY OTHER ESSENTIAL DISTINGUISHING INFORMATION ABOUT ANY HUMAN BEING, ALL OF WHICH, ALL OF WHICH IS BY LAW KEPT OFF THE BARGAINING TABLE THAT BEARS UP THIS HUMAN RIGHTS BASED SOCIETY. BUT IF THIS ARGUMENT IS TRULY DIFFERENT, OKAY, I'M GIVE YOU THIS, IF THIS ARGUMENT IS TRULY DIFFERENT, IF BECAUSE OF ITS FISCAL COMPONENT AS THE UNITED STATES CHAMBER OF COMMERCE MIGHT ARGUE, WE MUST LOCATE THIS DEBATE WITHIN THE FRAMEWORK OF AN IMPLICIT YOU TIL TARIANISM I WOULD POINT TO IMPORTANT CONTRIBUTIONS I AND OTHER GENETICALLY VULNERABLE PEOPLE HAVE BEEN ABLE TO MAKE BECAUSE WE HAVE BEEN LUCKY ENOUGH TO REMAIN CONSIDERED EMPLOYABLE. I WILL POINT TO THE CONTRIBUTIONS MY DAUGHTER 21 YEARS OLD HOPES TO MAKE WITH HER TWO DEGREES IN PUBLIC POLICY AND ECONOMICS FROM DUKE UNIVERSITY. I WOULD POINT TO THE WAY IN WHICH OUR FAMILIES COMPLETION OF INNEWMAN RABBLE SILO. I WOULD ARGUE THAT WE ARE IN FACT MAKING A DIFFERENCE FOR THE HEALTH OF ALL PEOPLE, EVERYONE IN THIS ROOM. THAT WE HAVE LIVED UP TO OUR END OF THE SOCIAL CONTRACT AND DESERVE THE SAME FUNDAMENTAL LEGAL PROTECTIONS THAT ARE EXTENDED TO ALL AMERICANS. LAST SUMMER ATTORNEY LAWRENCE LOR BA REPRESENTING THE U.S. CHAMBER OF COMMERCE, THE LOUDEST VOICE SPEAKING AGAINST FEDERAL GENETIC INFORMATION PROTECTIONS HOLD A HOUSE EDUCATION AND WORK FORCE COMMITTEE THAT THE POSSIBILITY OF MANY PLOYERS BEING ACCUSED OF ENGAGING IN GENETIC GENETIC NATION WOULD BE DISASTEROUS FOR THEM FROM A LEGAL AND PUBLIC RELATIONS PERSPECTIVE. HE OFFERD THAT AS PROOF THAT GENETIC DISCRIMINATION LEGISLATION IS UNNECESSARY. I WOULD LIKE MR. LOR BETTER TO TELL THAT TO MY FRIEND SUSAN. A 38-YEAR-OLD WOMAN HOSPICE TER IS BEING TREATED FOR BREAST CANCER. MOTHER HAD BREAST CANCER AND AUNT DIED OF IT. WE SAT TOGETHER AT ONE OF OUR SON'SIZE ICE HOCKEY GAMES AND SHE SHARED HER STORY. I GENTLY ASKED HER WHETHER SHE CONSIDERED SPEAKING WITH A GENETIC COUNSELOR. OH, KNOW, SHE EX-CHAINED, I WOULD NEVER DRK EXCLAIMED. I WOULD NEVER WANT TO RISK LOSING MY INSURANCE. A MASTERS PREPARED PERSON WHO WATCHES CNN AND READS THE PAPER. PEOPLE ARE AFRAID. THE FEAR KEEPS THEM FROM BEING TESTED EVEN WHEN THIS TEST MIGHT MAKE THE DIFFERENCE BETWEEN WHETHER THEY LIVE OR DIE. AND AT THE RISK OF SOUNDING PARANOID, I WOULD GO ON TO STUG THAT NONE OF US -- SUGGEST THAT NONE OF US PRESENT TODAY CAN AFFORD THE LUXURY OF WRITING OFF THIS PROBLEM TO HIGH RISK INDIVIDUALS LIKE ME. THE STAGE IS ALREADY SET FOR A PROBLEM OF CAT CATASTROPHIC PROPORTIONS. GUTHRIE SPOT PROGRAMS WHERE BY EVERY NEW BORN INFANT ABOUT'S BLOOD IS COLLECTED SCREENED AND STORED ARE FOUND IN ALL THE STATES AND TERRITORIES OF THE U.S. AND PROVIDE WHAT IS POTENTIALLY THE LARGEST AND MOST COMPLETE GENETIC BANK AND LIBRARY AVAILABLE IN THE COUNTRY. CONTINUED NONUSE OF OF GENETIC INFORMATION IMPLIED BY INSURANCE COMPANIES AND EMPLOYERS LACK OF INTEREST TO DATE DOES NOT PROVIDE SAFE UARDS FOR ANY OF US HIGH RISK OR NO.

WOO ASK YOU TO AT ONE MINUTE TO WRAP UP.

I'M ALMOST DONE.

WE WITH STRONG FAMILY HISTORY OF DISEASE IN WHICH THE TONE OF ILLNESS HAS BEEN PASSED FROM AGAINATION TO GENERATION ARE SIMPLY THE FIRST LINE OF DEFENSE AGAINST A STAGGERING SPECSPECTRUM OF POSSIBLE ABUSES. WE WANT TO BE HEARD. WE WANT TO BE PROTECTED AND WE DON'T WANT TO SIT IN THE BACK OF THE BUS ANY MORE. THANK YOU.

THANK YOU VERY MUCH. I THINK I DISAGREE WITH YOUR OPENING STATEMENT THAT YOU DIDN'T HAVE ANYTHING MORE TO ADD BECAUSE YOU DEFINITELY HAD A LOT MORE TO ADD. THANK YOU FOR YOUR VERY POWERFUL TESTIMONY. NOW, WE WILL HEAR FROM TONIA PHILLIPS.

GOOD MORNING, LADIES AND GENTLEMEN OF THE COMMITTEE. MY NAME IS TONIA PHILLIPS AND I'M HERE TO TELL MY STORY. IT IS SHORT AND SWEET. I WORK FOR A SMALL COMPANY OF ABOUT 4 PEOPLE INCLUDING MY TWO LOSSES THE OWNERS. WE ARE A TIGHT KNIT FAMILY. THEY HAVE BEEN WITH ME THROUGH MY MOTHER DAIING DIE ARLE OVARIAN CANCER AND MY GENETIC TETING FOR BRCA2 MUTATIONS. I WAS OPEN WITH MY EXPERIENCE JUST BECAUSE WE ARE A SMALL COMPANY AND THERE WAS NO WAY TO HIDE IT. AFTER FINDING OUT I WAS POSITIVE FOR THE BRCA1 MUTATION IN MARCH OF 2003, WHICH MEANS I HAVE AN 80% LIFETIME CHANCE OF GETTING OVARIAN CANCER AND A 45% LIFETIME CHANCE OF GETTING BREAST CANCER, I BEGAN PREVENTATIVE. I HAD A HIS TER HYSTERECTOMY IN OCTOBER OF 2003 AND A PRO FILL PROPHYLACTIC MA SECTTOMY. OUR GROUP HEALTH INSURANCE CAME IN THE MAIL AND IT HAD GONE UP $13,000 A YEAR FOR FOUR PEOPLE. MY BOSS GOT THE BILL AND YELLED THROUGH THE OFFICE NEWS THAT SHE WAS DIRECTING THAT TOWARDS ME I WAS IMMEDIATELY ASKED TO SWITCH TO MY HUSBAND'S HEALTH INSURANCE POLICY BECAUSE MY SITUATION WAS THE REASON THE INSURANCE PREMIUM WENT UP SO MUCH AND THEY SAID THAT I WAS -- IF I WAS TAKEN OFF THE POLICY IT WOULD NOT GO UP. I WAS EVEN TOLD THAT THEY WOULD RAISE NYMY HOURLY RATE IF I SWITCHED. I TOLD HER I WAS NOT COME COMFORTABLE WITH SWITCHING INSURANCE COMPANIES AT THE TIME BECAUSE I WAS STILL IN THE RECONSTRUCTION PROCESS. IT WAS LIKE PULLING TEETH TO GET THE INSURANCE COMPANY TO PAY FOR THESE PROCEDURES AND SWITCHING WOULD CONFUSE AND COMPLICATE EVERYTHING. I DIDN'T THINK IT WAS IN MY BEST INTEREST TO SWITCH WHILE I STILL NEEDED MORE SURGERY. MY FEELING IS THAT ANY ONE IN THE COMPANY COULD BE DIAGNOSED WITH ANYTHING TOMORROW AND THAT IT IS NOT FAIR THAT I BE ASKED TO DROP INSURANCE THAT IS IMPORTANT TO ME. I WAS DOING SOMETHING THAT WOULD PREVENT ME FROM GOING THROUGH A HORRIBLE DISEASE THAT WOULD COST MUCH MORE THAN THE PREVENTATIVE SURGERIES I WAS HAVING. WE FINALLY CAME TO AN AGREEMENT THAT EMPLOYEES WOULD HAVE TO START PAYING HALF OF THEIR PREMIUM WHICH IS FINE AND FAIR WITH ME BUT I'M SHIRR THE OTHER EMPLOYEES WEREN'T TOO HAPPY TO ME. IT SEEMS UNFAIR TO ME THAT I'M TAKING STEPS TO KEEP MYSELF HEALTHY AND PREVENT CANCER IN THE FUTURE AND I'M BEING SINGLED OUT AND MADE TO FEEL I AM A LIABILITY. I ALSO DON'T SMOKE. I WORK OUT. I EAT RIGHT MOST OF THE TIME. IF SOMEONE IN THE COMPANY WERE DIAGNOSED WITH CANCER OR SOME OTHER DISEASE THEY WOULD NOT HAVE BEEN ASKED TO SWITCH INSURANCE COMPANIES AS I WAS ASKED. I HOPE THAT ME COMING HERE AND TELLING MY STORY WILL HELP WITH DEFINING THE PROBLEM AND PASSING LAWS AGAINST GENETIC DISCRIMINATION OF ANY KIND. INARCHINGTHANK YOU.

THANK YOU, MS. FILL MS. PHILLIPS. YOU DEFINITE ANY DO HELP TO DEFINE THE PROBLEM. NOW, WE WILL HERE FROM PAULA FUNK.

GOOD MORNING. THANK YOU SO MUCH FOR INVITING ME TO COME AND TALK ABOUT MY STORY. WHEN YOU ARE GOING THROUGH THE PROCESS OF FINDING OUT YOUR GENETIC PREDISPOSITION SOMETIMES YOU FEEL ALONE AND LAST NIGHT I WAS THINKING THIS ISN'T ANYTHING I SHOULD BE NERVOUS ABOUT BECAUSE YOU ARE HERE TO HELP ME AND I APPRECIATE THAT INVITATION. MY NAME IS PAULA FUNK. I'M A MOTHER OF TWIN THREE-YEAR-OLD DAUGHTERS AND I HAVE A HUSBAND THAT IS HERE WITH ME TO SUPPORT ME TODAY. AND MY FAMILY HAS A STRONG HISTORY OF BREAST AND OH IAN CANCER. I'M GOING TO TELL YOU A LITTLE BIT ABOUT MY FAMILY. MY DAD IS ONE OF TEN CHILDREN AND HE HAS FIVE SISTERS. ALL FIVE OF HIS SISTERS HAVE HAD BREAST CANCER AND THE CURRENT COUNT RIGHT NOW IS THAT 8 OF MY CUE SINS HAVE HAD -- COUSINS HAVE HAD BREAST CANCER AS WELL. THE NUMBER BREAKDOWN THERE, THAT IS 13 WOMEN OUT OF 24 THAT HAVE HAD BREAST CANCER. THIS DISEASE IS SOMETHING THAT THE WOMEN OF MY FAMILY HAVE TO CONSTANTLY THINK ABOUT. THERE IS A CONSTANT THREAT. MY FIRST MEMORY IN LIFE IS TAKING MY AUNT DOROTHY TO HER WEEKLY TREATMENTS TO FIGHT BREAST CANCER. IF IS A SKETCHYY MEMORY BUT I REMEMBER CLEARLY HER LAYING DOWN IN THE BACK OF MY MOM'S STATION WAGON IN A PINK NIGHT GOWN AND WE TOOK HER TO TREATMENT EVERY WEEK AND THAT WAS THE BEGINNING OF MY UNDERSTANDING OF WHAT MY FUTURE HAD FOR ME. MY SWEET AUNT DOROTHY SURVIVED BREAST CANCER TWICE AND IS NOW FIGHTING OH OVARIAN. SHE HAS TO HAVE A SURGERY TO REPAIR TISSUE. THEY HAVE TO DO TREATMENT JUST TO PATCH THE AREA. THIS MAKES ME REALLY SAD. IT MAKES ME FEEL LIKE I HAVE TO AGGRESSIVELY FIGHT MY POSSIBILITY OF OF CANCER. TEN YEARS AGO, I STARTED REAL ZING THIS AND I DECIDED TO PURSUE GENS TESTING. AT THAT -- GENETIC TESTING. AT THAT TIME GENETIC TESTING REQUIRED SEVERAL WOMEN FROM ONE FAMILY TO GIVE A BLOOD SAMPLE TO DETERMINE IF THERE WAS IN FACT A GENETIC MUTATION. I APPROACHED MY AUNTS AND COUSINS ABOUT THIS AND THEY TALKED TO THEIR PHYSICIANS AND THEIR PHYSICIANS RECOMMENDED THAT THEY NOT PURSUE GENETIC TESTING BECAUSE AT THE TIME PEOPLE COULD DENY INSURANCE AND THE DISCRIMINATION COULD BE EVEN WORSE IN THE FUTURE AS MORE WAS LEARNED ABOUT BEING GENETICALLY POSITIVE. BECAUSE OF THIS, I CHOSE NOT TO HAVE THE TEST AT THE TIME. I WAS 23 AND 30 SEEMED LIKE A LONG WAYS AWAY. WELL, I'M 33 NOW AND I'M IN THE MIDDLE OF WHERE MOST OF THE WOMEN IN MY FAMILY BEGIN TO GET BREAST CANCER. TWO OF THE WOMEN WERE 30 WHEN THEY WERE DIAGNOSED. BECAUSE I AM IN THE MIDDLE OF THAT STAGE WHERE MOST OF THE WOMEN GET BREAST CANCER, IN MAY OF 2003 I DECIDED TO CONSIDER BEING GENETICALLY TESTED AGAIN. I TALKED WITH THE GENETIC COUNSELOR AND SHE ASKED ME A LOT OF QUESTIONS ABOUT INSURANCE. IT WAS AN UNFORTUNATE TIME FOR ME TO WANT TO PURSUE IT. MY HUSBAND AND I JUST OPENED OUR OWN SMALL BUSINESS. WE WERE THE TWO PEOPLE IN THE BUSINESS. AS I RESEARCHED ABOUT INDIVIDUAL INSURANCE, I LEARNED THAT EVEN WITH THE GAPS THAT HPA PROVIDES IT IS A BIGGER PROTECTION THAN WHAT INDIVIDUAL INSURANCE PROVIDES. THERE IS NO PROTECTION. IT IS CONSIDERED FREE MARKET AND THEY CAN DENY YOU FOR ANYTHING. AS A MATTER OF FACT, I WAS DENIED FROM INDIVIDUAL INSURANCE BECAUSE I HAD HAD A C SECTION. BECAUSE OF THIS, WE BEGAN LOOKING TO SEE IF WE COULD FIND A GROUP INSURANCE POLICY FOR TWO PEOPLE. ALMOST ALL OF THE INSURANCE COMPANIES REQUIRED THREE TO FIVE PEOPLE TO QUALIFY AS A SMALL GROUP. I FINALLY TALKED TO UNITED HEALTHCARE WHICH ALLOWED THE TWO PERSON COMPANY TO BE CONSIDERED A GROUP IF THEY HAD NOT ACCEPTED THIS MY HUSBAND AND I WERE GOING TO HAVE TO CLOSE OUR SMALL BUSINESS AND HE WAS GOING TO GO TO WORK FOR A LARGE COMPANY SO WE COULD HAVE PROTECTION IN A LARGE GROUP. I'M THANKFUL THAT THEY ACCEPTED ME AS A SMALL GROUP. BUT I LIVE WITH THE FEAR EVERY DAY THAT I COULD BE REJECTED. DURING THE TIME THAT I WAS TRYING TO FIND INSURANCE I ASKED MY FATHER IF HE WOULD BE TESTED FIRST BECAUSE THE GENETIC DISORDER WAS GOING THROUGH HIS SIDE OF THE FAMILY, NOT MY MOTHER'S, WHICH IS WHAT WE USUALLY HEAR. HE TOOK THE GENETIC TEST AND CAME BACK POSITIVE. I KNEW FROM MY RESEARCH THAT I HAD A 50/50% CHANCE OF CARRYING THIS MUTATION AS WELL. IT WAS TORTUROUS WAITING THE THREE MONTHS TO FIND OUT IF I COULD HAVE INSURANCE BUT I FINALLY WAS ABLE TO TAKE THE TEST AND I, TOO, CAME BACK RCA STRAND 1 POSITIVE. THIS MEANS THAT MY TWIN DAUGHTERS HAVE A 50% CHANCE OF HAVING THE MUTATION AS WELL AND I HAVE UP TO AN 88% RISK OF BREAST CAN TER IN MY LIFETIME AND UP TO A 44 RISK OF OVARIAN CANCER AS WELL AND OVARIAN IS PARTICULARLY ALARMING TO ME BECAUSE I HEARD THAT THERE IS A 50% MORTALITY RATE ONCE YOU ARE ABLE TO BE DIAGNOSED WITH IT. I'M SO GRATEFUL THAT I HAVE AN OPPORTUNITY TO SAVE MY OWN LIFE, THOUGH. I HOPE TO HAVE A PROPHYLACTIC MMASMA SECTTOMY THIS FALL. I PLAN ON HAVING MY OVARIES REMOVED AS WELL AFTER I FINISH HAVING CHILDREN. THAT WILL GIVE GIVE ME A 95% CHANCE THAT I WILL NO HAVE OVARIAN CANCER. I PUSHED THROUGH WITH BEING GENETICALLY TESTED IN SPITE OF MY FEARS. I HAVE HAD SEVERAL PROBLEMS ALONG THE WAY BECAUSE I WAS TESTED GENETICALLY. THE FIRST ONE I MENTIONED EARLIER, WE PUT OFF BEING TESTED FOR TEN YEARS BECAUSE OF WHAT THE PHYSICIANS RECOMMENDED BECAUSE OF THE POTENTIAL DISCRIMINATION. COUNTLESS WOMEN IN MY FAMILY DURING THE LAST TEN YEARS HAVE BEEN DIAGNOSED WITH BREAST CANCER AND WE HAVE, AND SEVERAL OF THEM HAVE LOST THEIR BATTLE TO BREAST CANCER ZWLA COULD HAVE ALL BEEN PREVENTED IF WE HAD PURSUED TESTING THEN. THAT GRIEVES ME THINKING ABOUT THE LOSS OF LIFE THERE THAT COULD HAVE BEEN AVOIDED. I HAVE DECIDED THAT KNOWLEDGE ABOUT MY HEALTH IS A GIFT. I WANT EVERYONE TO FEEL THE FREEDOM TO HAVE THAT GIFT. MY DAD AND I PAID FOR OUR OWN TESTS BECAUSE OF OUR FEAR AND R AND THEN MY DOCTORS AFTER I WAS DIAGNOSED BRCA STRAND 1 POSITIVE CHACED MY DIAGNOSIS R CHANGE THE MY DIAGNOSIS CODE FOR EACH PROCEDURE THAT THEY REQUESTED. FOR THE BREAST MRI THEY DIDN'T WRITE THAT I'M BRCA STRAND ONE POSITIVE. THEY SIMPLY WROTE THAT I HAD A STRONG FAMILY HISTORY. AND I KNOW THAT THAT MEANS THAT THERE IS DISCRIMINATION OUT THERE OR THEY WOULDN'T DO THAT BEING BRCA STRAND ONE POSITIVE IS A STRONGER CASE THAN HAVING A STRONG FAMILY HISTORY. I AM IN THE PROCESS OF SENDING OUT INFORMATION PACKETS TO 86 DIFFERENT ADDRESSES OF MY DIRECT RELATIVES AND THINKING ABOUT THE FACT IF THERE IS 86 DIFFERENT ADDRESSES HOW MANY DIFFERENT PEOPLE LIVE THERE BECAUSE THIS IS A DISEASE THAT AFFECTS MEN AND WOMEN. MEN HAVE THE SAME CHANCES CARRYING THIS STRAND AS WOMEN DO. AS I TALKED TO MY FAMILY MEMBERS, THE AMAZING THING TO ME IS THEY HAVE MORE QUESTIONS ABOUT GENETIC DISCRIMINATION THAN THEY DO ABOUT HOW IT AFFECTS THEIR HEALTH. THAT IS SO SAD TO ME. AND MOST OF THE RELATIVES THAT I HAVE TALKED TO HAVE REFUSED TO TAKE THE TESTS BECAUSE OF THAT FEAR. AND I CAN'T HELP BUT THINK JUST IN MY FAMILY IF WE COULD ALL BAND TOGETHER HOW MUCH WE COULD DO FOR THE RESEARCH OF GENETICS IF THEY FELT THE FREEDOM TO BE TESTED. I HAVE ONE COUSIN THAT DESPERATELY WANTS TO TAKE THE TEST BUT HER HUSBAND IS A PREACHER AT A SMALL CHURCH AND THEY HAVE AN INDIVIDUAL INSURANCE POLICY SO SHE CAN'T TAKE THE TEST. THERE IS NO PROTECTION AT ALL FOR HER. AND SHE IS 35. SHE IS TWO YEARS OLDER THAN ME AND IF THE 13 WOMEN IN MY FAMILY THAT HAVE HAD BREAST CANCER MOST OF THEM HAVE BEEN IN THEIR 30s. IF MAKES ME SO SAD THAT SHE HAS TO WAIT UNTIL SHE HAS CANCER UNTIL INSURANCE WILL PAY FOR A PROCEDURE. ONE LAST AREA OF CONCERN IS THE PROBLEM THAT I'M HAVING WITH INSURANCE CURRENTLY. I HAVE HAD MY INSURANCE FOR LESS THAN A YEAR. OTHERS IN THE BASIC SCREENING TESTS THAT -- OTHER THAN THE BASIC SCREENING TESTS THAT I HAD TO DETERMINE WHETHER I CURRENTLY HAVE CANCER OR NOT SUCH AS CA125 COUNTS, ULTRASOUNDS, MA'AM MOW GLAMS AND A BREAST -- MAMMOGRAMS AND A BREAST MRI AND A NEEDLE BIOPSY THERE HAVE BEEN NO OTHER EXPENSES AND I WAS INFORMED THAT MY HEALTH INSURANCE WAS RAISED $100 A MONTH WITH NO EXPLAINABLE REASON. I TALKED TO SEVERAL MEDICAL PEOPLE AND THEY SAY THAT THIS IS UNUSUAL AND LOOKS SUSPICIOUS. INAND ANOTHER PROBLEM THAT I'M HAVING CURRENTLY IS THAT PROPHYLACTIC MEASURES ARE NOT SOMETHING THAT THAT THEY AUTOMATICALLY COVER. OH TWO MONTHS AGO I REQUESTED FOR THEM TO AGREE TO COVER A PROPHYLACTIC MA MASTECTOMY FOR ME. MY FATHER HAD BYPASS SURGERY FIVE YEARS AGO AND THERE WAS NO BOARD OF REVIEW THAT HE HAD TO GO TO FOR THAT SURGERY AND I DON'T UNDERSTAND WHY I HAVE TO SIT AND WAIT DURING THAT TWO MONTHS. ONE THING THAT I WOULD LIKE TO LEAVE YOU WITH, IT I IS I SO APPRECIATE YOU LISTENING. MY MEDICAL MANAGEMENT AND MEDICAL MANAGEMENT OF MANY OF MY FAMILY HAVE GREATLY BEEN AFFECTED BOTH BY GENETIC DISCRIMINATION AND THE FEAR AND POSSIBILITY OF IT. AVOIDING DISCRIMINATION HAS BECOME A MAJOR PART OF MY TAYLY E AND DISCRIMINATION WORRIES ME SO MUCH FOR THE FUTURE AS WELL. LAST SATURDAY, MY HUSBAND JONATHAN AND MY TWO DAUGHTERS AUDREY AND ANNA AND I WALKED IN THE RACE FOR THE CURE. MY 4-YEAR-OLD DAUGHTERS HAD SO MANY QUESTIONS ABOUT WHAT WAS GOING ON AND WHAT WAS IT ABOUT AND MY ANSWERS HAD TO BE SIMPLE BECAUSE THEY WERE SO YOUNG. BUT I COULDN'T HELP BUT THINK WHAT A COMPLEX ISSUE THIS HAS BEEN FOR ME AND MY PRAYER IS THAT WHEN THEY ARE OLD ENOUGH TO DECIDE WHETHER THEY SHOULD BE TESTED GENETICALLY THAT DISCRIMINATION ISN'T EVEN A PART OF THEIR DECISION PROCESS. FINDING OUT YOUR GENETIC STATUS IS PERMANENT. YOU CAN'T TAKE IT BACK. AND IT ISN'T SOMETHING THAT YOU CAN CHANGE YOUR MIND ON AND WHAT I REALLY NEED AND WHAT WE ALL NEED IS A LAW THAT CLEARLY DEFINES THE SAFETY AND THE FACT THAT YOU CANNOT BE DISCRIMINATED AGAINST GENETICALLY. WE DON'T KNOW WHAT THE FUTURE HOLDS OR HOW SOCIETY HAS CHANGED SO AT THIS POINT I'M VERY VULNERABLE DEPENDING ON THE DIRECTION THAT THAT GOES. THANK YOU SO MUCH FOR YOUR TIME AND THANK YOU FOR INVITING ME TO TELL MY STORY.

THANK YOU, MS. FUNK. WE WILL NOW HEAR FROM MS. HEIN STROSA.

GOOD MORNING. MY NAME IS CARE LENA MINE LEE MINE STROH IS A. I AM A TEN YEAR TWO TIME BEST CANCER SURVIVOR. I'M A MOTHER OF A 13-YEAR-OLD DAUGHTER AND THE EXECUTIVE VICE PRESIDENT FOR PROGRAMS PLANNING IN THE NATIONAL BREAST CANCER COALITION. MY FIRST DIAGNOSIS WITH BREAST CANCER WAS AFTER THE AGE OF 35 THE SECOND WAS AT AGE OF 40. MY YOUNGEST SISTER WAS ALSO DIAGNOSED TWICE. FIRST AT AGE 29 AND THEN AT 34. OVER CHRISTMAS LAST YEAR TWO OF MY COUSINS AND AN AUNT WERE DIAGNOSED WITH BREAST CANCER AS WELL. OF COURSE, WE SUSPECT THIS IS A GENETIC MUTATION THAT PREDISPOSES MEMBERS OF MY FAMILY TO BREAST CANCER. APARTMENT CAREFULLY WEIGHING THE POTENTIAL BENEFITS AND HARMS OF GENETIC TESTING I DECIDED NOT TO UNDERGO TESTING FOR FEAR OF POTENTIAL CONSEQUENCES TO MY DAUGHTER. MY FEARS ARE TWO FOLD. FIRST, THAT THE INFORMATION MAY NOT BE PRO DEBTED AND MIGHT -- PROTECTED AND MIGHT EVEN BE MISUSED. I ALSO WORRY THAT IF I TEST POSITIVE MY DAUGHTER MIGHT BE OBLIGATED TO DISCLOSE THE PRESENCE OF A 21ST GENETIC MUTATION AND MIGHT SUFFER DITS CRIM ION AND IN HEALTH INSURANCE AND EMPLIMENT IN THE FEATURE. YET NONE OF US IS SAFE ENOUGH TO UNDERGO AGAINST TESTING. MY FAMILY EXPERIENC ILLUSTRATES WHY OUR FAMILY NEEDS STRONG GENETIC NONDISYIP NATION DISCRIMINATION LAWS. SINCE ITS FOUNDING IN 1991 THE NATIONAL BREAST CANCER COALITION WHICH I AM A MEMBER AND EXECUTIVE VICE PRESIDENT HAS CHANGED THE WORLD OF BREAST CANCER IN PUBLIC POLICY, SCIENCE, INDUSTRY AND ADVOCACY BY EMPOWERING OR FAMILIAR FAMILIES AND FRIENDS AND CREATING RESEARCH AVENUES FOR QUALITY ACCESS TO HEALTHCARE. THE NATIONAL BREAST CANCER COALITION IS NOW OVER 600 STRONG IN TERMS OF ORGANIZATIONS WHO ARE MEMBERS AND WE REPRESENT SEVERAL MILLION PATIENTS, PROFESSIONALS, WOMEN, OUR FAMILIES AND FRIENDS. COALITION MEMBERS INCLUDE CANCER SUPPORT INFORMATION AND SERVICE GROUPS AS WELL AS WOMEN'S HEALTH AND PROVIDER. THE MAPPING OF THE HUMAN GENOME HAS BROUGHT WITH IT THE PROMISE OF REDUCING HUMAN SUFFERING BY TARGEB TARGETING INTERVENTION. THE NATIONAL BRAEFT BREAST CAN SORE LIEVES THAT STRONG LEGISLATION.

IMPORTANT. IT IS INFORMATION THAT SHOULD NOT BE DISCLOTESED WITHOUT THOR ZAIAUTHORIZATION BY THE INDIVIDUAL. IT COULD LEAD TO HARM IN THE AREA OF EMPLOYMENT, EDUCATION, HEALTHCARE AND INSURANCE. THE 1996 HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT TOOK STEPS TOWARDS EXTENDING PRO TEBUCKY TO INDIVIDUALS FROM GENETIC DISCRIMINATION IN THE HEALTH INSURANCE ARENA BY CREATING PRIVACY STANDARDS BUT THE LAW DOES NOT GO FAR ENOUGH. IT IS TIME TO EXTEND PROTECTIONS AGAINST GENETIC DISCRIMINATION TO EVERYONE. THE DEVELOPMENT OF NEW GENETIC TESTS NECESSARYIATES LEGISLATIVE ENACT. FEAR OF POTENTIAL DISCRIMINATION THREATENS A WOMAN'S DECISION TO USE NEW GENETIC TECHNOLOGIES AND TO SEEK THE BEST MEDICAL CARE. WOMEN ARE ALSO AFRAID TO ENROLL IN RESEARCH AND CLINICAL TRIALS THAT INVOLVE GENETIC STUDIES AND THIS IN TURN THREATENS THE ABILITY OF THE SIGH SCIENTIFIC COMMUNITY TO CONDUCT THE RESEARCH NECESSARY TO UNDERSTAND THE CAUSE AND FIND A CURE FOR BREAST CANCER. MANY OF THE WOMEN TESTIFYING AND PRESENT IN THE AUDIENCE COULD HAVE EXPERIENCED EXACTLY THOSE CONCERNS. NBCC STRONGLY SU SPORTS THE ENACTMENT OF LEGISLATION THAT WOULD PROTECT MILLIONS OF INDIVIDUALS NOT ONLY IN HEALTH INSURANCE BUT ALSO IN THE WORK PLACE AND THAT WOULD PROVIDE STRONG ENFORCE ENFORCEMENT MONTREAL EXPOMONTREAMECHANISMS.N CAN BCC SUPPORTS SR1910. THIS LEGISLATION PROHIBITS HEALTH PLANS FROM REQUESTING, REQUIRING, COLLECTING OR DISCLOSING GENETIC INFORMATION WITHOUT PRIOR SPECIFIC WRITTEN AUTHORIZATION OF THE INDIVIDUAL. AN INDIVIDUAL'S REQUEST FOR GENETIC SERVICES TO DENY OR LIMIT ANY COVERAGE TO ESTABLISH ELIGIBILITY, EDUCATION, ENROLLMENT OR CONTRIBUTION REQUIRE OPINIONS OR FROM ESTABLISHING PREMIUM RATES BASED ON GENETIC INFORMATION OR AN INDIVIDUAL REQUEST FOR GENETIC SERVICES. THIS LEGISLATION ALSO PROVIDES EMPLOYERS FROM USING GENETIC INFORMATION TO AFFECT THE HIRING OF AN INDIVIDUAL OR TO AFFECT THE TERMS, CONDITIONS, PRIVILEGES, BENEFITS OR TERMINATION OF EMPLOYMENT UNLESS THE EMPLOYMENT ORGANIZATION CAN PROVE THE INFORMATION IS JOB RELATED AND CONSISTENT TO BUSINESS NECESSITY. ALSO FROM REQUESTING, REQUIRING, COLLECTING OR DISCLOSING GENETIC INFORMATION PRIOR TO A CONDITIONAL OF OF EMPLOYMENT OR UNDER ALL OTHER CIRCUMSTANCES REQUESTING OR REQUIRING COLLECTION OF DISCLOW SUR OR DISCLOSURE OF GENETIC INFORMATION UNLESS THE EMPLOYMENT ORGANIZATION CAN PROVE THIS INFORMATION IS JOB RELATED AND CONSISTENT WITH BUSINESS NECESSITY. IT ALSO PROHIBITS FROM ACCESSING GENETIC INFORMATION CONTAINED IN MEDICAL RECORDS RELEASED BY INDIVIDUALS AS CONDITION OF EMPLOYMENT IN CLAIMS FILED FOR REIMBURSEMENT, HEALTHCARE COSTS AND OTHER SERVICES. IT PROHIBITS RELEASING GENETIC INFORMATION WITHOUT THE ORIGINAL THOR AUTHORIZATION OF THE INDIVIDUAL. MOST IMPORTANTLY, HR1910 HAS STRONG ENFORCEMENT LANGUAGE AND PROVIDES INDIVIDUALS WITH A PRIVATE RIGHT OF ACTION TO GO TO COURT FOR LEGAL AND EQUITABLE RELIEF IF THEY ARE A VICTIM OF GENETIC DISCRIMINATION WHETHER SUBJECT TO DISCRIMINATION BY THE HEALTH PLAN OR THE IMPLOWER. NBCC DOES NOT SUPPORT S1053 PASSED BY THE SENATE ON OCTOBER OF TWIEW 2003 BECAUSE IT DOES NOT CONTAIN SUFFICIENT ENFORCEMENT PROVISIONS. UNLIKE HR1910, S1053 DOES NOT PROVIDE INDIVIDUALS WITH A PRIVATE RIGHT OF ACTION SHOULD THEY BECOME A VICTIM OF ENETIC DISCRIMINATION. NBCC LEAVE BELIEVES THAT A RIGHT WITHOUT NO ENFORCEMENT IS REALLY NOT A RIGHT AS OUGHT AT ALL. NO MATTER HOW MUCH IS INCLUDED IN PUTTING PROTECTIONS THAT THE BREAST CANCER PATIENTS NEED IF THE BILL DOES NOT HAVE A STRONG ENFORCEMENT MECHANISM THEN NBCC WILL NOT SUPPORT IT. AS WE CLEARLY CAN SEE FROM THE WITNESSES MERE TODAY GENETIC DISCRIMINATION IS A REAL AND GROWING PROBLEM THAT NEEDS IMMEDIATE SOLUTION. NOT ONE THAT SHOULD WAIT UNTIL WE HAVE FURTHER CASES OF WOMEN AND MEN WHO EXPERIENCED THIS TYPE OF DISCRIMINATION THAT IS SO DETRIMENTAL TO THE ABILITY TO SEEK QUALITY HEALTHCARE. THANK YOU FOR THE OPPORTUNITY TO SHARE THE VIEWS OF THE NATIONAL BREAST CANCER COALITION.

THANK YOU VERY MUCH FOR YOUR OWN PERSONAL EXPERIENCE AS WELL AS FOR THE VIEWS OF THE NATIONAL BREAST CARE COALITION. AND NOW LASTLY WE WILL HEAR FROM PHIL HARDT.

GOOD MORNING. IT IS A PRIVILEGE TO BE HERE TODAY AND I WANT TO THANK THE COMMITEE FOR INVITING ME TO SHARE NYE THOUGHTS AND PERSONAL -- MY THOUSANDS THOUGHTS AND PERSONAL EXPERIENCES. I HAVE HEMOPHILIA B A BLEEDING DISORDER AND ALSO HUNGINGTON ABOUTS DISEASE, A DEGENERATIVE BRAIN DISORDER WHICH I INHERITED FROM MY FATHER. MY TWO BIOLOGICAL DAUGHTERS AND GRAND DAUGHTERS ARE CARRIERS OF HEMOPHILIA B AND AS A RESULT I NOW HAVE TWO HANDSOME GRANDSONS WHO MUST INFUSE WITH CLAW DEAN FACTOR EACH TIME THEY GET HURT. ALL NYE CHIN WERE AT RISK FOR HUNTINGTON'S DISEASE BUT NONE OF THEM CARRY THE DESTRUCTIVE GENE AND CANNOT PASS IT ON TO SCBEPT GENT GENERATIONS. I MENTION BIOLOGICAL BECAUSE I HAVE FIVE ADOPTED CHILDREN FOUR OF HOW MANY HAVE SEVERE HANDICAPS. NEVERTHELESS, OUR STORERY IS ONE OF CONTINUING GENETIC DISCRIMINATION EVEN THOUGH WE HAVE LAWS THAT ARE SUPPOSED TO PROTECT ME, MY CHILDREN AND MY GRAND CHILDREN. IT WAS THE BEST OF TIMES, IT WAS THE WORST OF OF TIMES AS DICKENS SAID IN A TALE OF TWO CITIES. BECAUSE OF ADVANCEMENTS WITH THE HUMAN GENOME PROJECT WE STAND ON THE BRINK OF HAVING MORE USEFUL INFORMATION THAT HAS THE POTENTIAL OF HELPING LITERALLY MILLIONS OF INDIVIDUALS PREPARE EARLY FOR VARIOUS DISEASES. HOWEVER, THE REALITY IS THE KNOWLEDGE THAT YOU ARE CARRYING ANY PARTICULAR GENETIC DISORDER IN MY CASE HEMOPHILIA AND HD IS JUST AS DEVASTATING TO YOU, YOUR CHILDREN, AND YOUR GRAND CHILDREN AS THE DISEASE WILL BE LATER. THIS IS FURTHER EX-AS BETTER RATED IN HUNTINGTON'S DISEASE BECAUSE OF THE SEVERE ILT OF THE SIM AND THE NECESSITY FOR THOSE THAT FACE THE 50/50 CHANCE OF INHERITING IT TO PREPARE EARLY AND THOROUGHLY IN ORDER TO MINIMIZE ITS OVERALL DESTRUCTION. TENS OF THOUSANDS OF INDIVIDUALS WITH HUNTINGTONS DISEASE HAVE LIVED AND DIED AND ARE ALREADY IN THE INSURANCE COMPANY'S PROFITABILITY CALCULATIONS. HOWEVER, IT WASN'T NOTED ON THEIR DEATH CERTIFICATES BECAUSE OF GENETIC DISCRIMINATION FEARS. IT IS LUDICROUS NOW TO BELIEVE THAT BECAUSE YOU CAN KNOW EARLY THAT YOU MIGHT INHERIT A GENETIC DISORDER THAT ALL OF A SUDDEN WE ARE GOING TO CREATE HIGHER MEDICAL COSTS. THIS IS NOT THE CASE. WE ARE LIVING EXAMPLES OF THE TERACISA COMPLEX. IF YOU ARE A MEMBER, HE CONFRONTED EDIFICE WITH THE DA LEMMA. IT IS BUT SORROW TO BE WISE WE WISDOM PROFITS NOT. HUNTINGTON'S DISEASE IS AN IN HAIR AT THIS TIMED PROGRESSIVE BRAIN DISORDER THAT RESULTS IN LOSS OF MENTAL FACULTIES AND PHYSICAL CONTROL. IT CAUSES BRAIN CELLS TO DIE PREMATURELY AND CAUSES SPECIFIC IMPAIRMENT AND EVENT LALLY DEATH. EVERY CHILD OF AN AFFECTED PARENT HAS A 50% CHANCE OF INHERITING THE GENE AND SELL THE DISORDER THEMSELVES. EACH GENE POSITIVE CHILD BECOMING SYMPTOMATIC EVEN AS EARLY AS A YOUNG INFANT OR EVEN IN THE TEENAGE YEARS. HD HIM SYMPTOMS DEBILITATE A PERSON WHEN THEY LEAST EXPECT IT. USUALLY IN THE PRIME OF THEIR LIVES AROUND 40 YEARS OF AGE WHEN THEY STILL HAVE CHILDREN AT HOME AND ARE ACTIVELY PURSUING CAREERS. LIVING WITH HD IS LIKE LIVING WITH ALZHEIMER'S, PARKINSON'S, MS, AND GOING INSANE ALL AT THE SAME TIME. GENETIC TESTING HAS BEEN AVAILABLE FOR HUNTINGTON'S DISEASE FOR LONGER THAN ANY OTHER ADULT ONSET DISORDER SINCE 1993. THE DISCOVERY OF THE GENETIC MUTATION MADE POSSIBLE THE USE OF PREDICTIVE TESTING TO IDENTIFY CURRENT UNAFFECTED CARRIERS. IN 2000 COLLIN SAID GENETIC TESTING IS INTENDED TO GIVE FAMILIES WITH THE FAMILY HISTORY OF HD THE OPPORTUNITY TO ASSESS THEIR OWN RISK FOR DEVELOPING THE DISEASE MORE SPECIFICALLY, MONITOR THE HEALTH STATUS CLOSELY AND IF A PREDICTED MUTATION IS PRESENT MAKE INFORMED CHOICES ABOUT REPRODUCTION AND LIFESTYLE. IT IS INTERESTING TO NOTE HERE THAT BEFORE 1993 THE ALMOST QUARTER OF A MILLION INDIVIDUALS WHO ARE AT RISK FOR HD IN THE UNITED STATES WERE POLLED AND OVER WHELMINGLY ABOUT 90% OF THEM SAID THAT THEY WOULD TAKE ADVANTAGE OF THE TEST TO FIND OUT IF THEY WERE CARRYING THE DESTRUCTIVE HD GENE. HOWEVER, SINCE THE DEFINITIVE TEST BECAME AVAILABLE FEWER THAN 10% HAVE TESTED AS A DIRECT RESULT OF GENETIC DISCRIMINATION. I WOULD LIKE TO NOW TELL A LITTLE BIT ABOUT MY FAMILY HISTORY. IN 1971 I WAS DIAGNOSED WITH HEMOPHILIA B. IN 1989 I WAS HIRED BY ALLEY SIGNAL AUTOMOTIVE AND TOLD BY THE HR MANAGER THERE NOT TO TELL MY BOSS ABOUT MY HEMOTEALIHEYHEMOFILLIA OR I WOULD NEVER BE PROMOTED OR TRAINED BECAUSE HE WANTED TO GET THE BIGGEST RETURN ON INVESTMENT FOR HIS BUCKS AND IF HE KNEW I MIGHT HAVE A DISABILITY I WOULD NEVER GO ANYWHERE IN THE COMPANY. CONSEQUENTLY, ALL FUTURE PLEADING EPISODES HAD TO BE HIDDEN FROM HIM. IN 1996 A CLAIM I FILED ON CREDIT INSURANCE FOR A CAR I PURCHASED ON MY DAUGHTER WAS DENIED BECAUSE I HAD RECENTLY SEEN A NEUROLOGIST ARTING ROVE REGARDING PROBLEMS I WAS HAVING. IN 1997 I WAS DIAGNOSED AS HAVING HAUNTINGTONS HUNTINGTONS IT DISEASE. MY OLD EFTD DAUGHTER WAS TURNED DOWN FOR MORTGAGE INSURANCE BECAUSE OF HUNTINGTON'S DISEASE. COPIES OF SEVERAL REJECTION LETTERS ARE INCLUDED IN YOUR PACKETS AND NOTE THAT THE INSURANCE COMPANIES DON'T HAVE FEAR OF PUTTING THEIR REJECTIONS IN WRITE JG, EACH OF HER RE, CORRECTION LETTERS STATE THAT THEY WILL NOT INSURANCE HER UNTIL SHE TESTED FOR HUNTINGTON'S DISEASE AND TWO, THAT SHE IS FOUND TO BE NEGATIVE.

THEN THE INSURANCE AGENT ON ONE OF THE LETTERS WHERE THEY INSURANCE HER HUSBAND WRITES A NOTE AT THE BOTTOM THAT SAYS WHEN YOU FIND OUT YOUR STATUS FOR HD, THEN WE CAN INSURANCE YOUR CHILDREN. -- ENSURE YOUR CHILDREN SHOWING THAT THE DISCRIMINATION IS DOWN TO THE THIRD GENERATION NOW. IN 2002, MY GRANDSON ENICK MAXIMILIAN IS DENIED HEALTH INSURANCE COVERAGE BECAUSE OF HEMOPHILIA THAT HE INHERITED FROM ME AND A COPY OF IT DENIAL IS ALSO INCLUDED IN YOUR HANDOUTS. THEY MUST NOW EARN LESS THAN THEY ARE CAPABLE OF TO CALL QUALIFY FOR STATE WELFARE IN ORDER TO GET COVERAGE. NOW, IN 2002 MY DAUGHTER MICHELLE ANDERSON PHILLIP TESTED ANONYMOUSLY FOR HD TO PROTECT THEM IN CASE EITHER OF THEM TESTED POSITIVE AND I AM SEW VER THE HUNTINGTON'S DISEASE SOCIETY OF AMERICA AFFILIATE IN THE STATE OF ARIZONA AND IN 2001 A GENETICIST AND I ESTABLISHED ANONYMOUS GENETIC TESTING TO PROTECT INDIVIDUALS SO THAT THEY CAN USE A BOGUS NAME AND SOCIAL SECURITY NUMBER AND ADDRESS AND ALL OTHER INFORMATION AND PAY CASH BUT THE PROBLEM IS IT IS VERY EXPENSIVE. IT IS AROUND $900 OUT OF POCKET TO FIND OUT. BUT IT IS COMPLETELY CONCEALED. BUT IT IS A SHAME THAT WE HAVE TO DO THIS. AND LAST YEAR I PLIED FOR LONG-TERM I APPLIED FOR LONG-TERM CARE INSURANCE AND WAS REJECTED ON THE BASIS OF MY HD AFTER BECOMING DIVORCED AND REALIZED THAT I WOULD PROBABLY NEED SOMEONE TO TAKE CARE OF ME LATER. NOW, HERE IS THE LIST OF WAYS THAT OPEN GENETIC DISCRIMINATION ADVERSELY AFFECTS THOSE WITH HD OVER AND ABOVE THE NEGATIVE EFFECTS OF THE DISEASE ITSELF. THOSE WHO ARE AT RISK ARE RELUCRELUCTANT TO PARTICIPATE IN RESEARCH EVEN ANONYMOUS RESEARCH BECAUSE THEY FEAR OF BEING FOUND OUT. FOR EXAMPLE, THE FARRELL STUDY FOR HT COULD HAVE ALMOST A QUARTER OF A MILLION GAT AT-RISK INDIVIDUALS IN THIS BUT THEY HAVE ONLY BEEN ABLE TO RECRUIT ABOUT 1,000. IMAGINE THE DECREASE IN NUMBER NUMBERS. OTHER IMPORTANT RESEARCH TESTS ARE NO DIFFERENT. BECAUSE OF OUR SMALL NUMBERS UNFORTUNATELY WE NEED EVERY BIT OF DATA POSSIBLE TO MAKE THINGS SIGNIFICANT. PROPER MEDICAL AND MENTAL HEALTHCARE ARE NOT SOUGHT ON A TIMELY BASIS THAT COULD HAVE -- THAT WOULD HELP REDUCE SUFFERING AND RACE EVERYONE'S RAISE Q1S IF QUALITY OF LIFE. OPEN COMMUNECATION IS ALMOST NONEXISTENT BETWEEN PARENTS AND THEIR AT-RISK CHILDREN. HD MUST BE SHEPT SHROUDED IN -- KEPT SHROUDED IN SECRECY TO PROTECT EVERYONE. FOR THE SAME REASON, AT-RISK CHILDREN ARE NOT ENCOURAGED TO SEEK GOOD EDUCATION, COLLEGE EDUCATIONS, CAREERS WITH P COMPANIES THAT OFFER GROUP BENEFITS, MARRIAGE AND CHILD BEARING OPTIONS INCLUDING ADOPT. MISDIAGNOSIS OCCUR BECAUSE ONE DOESN'T KNOW OR KNOWS BUT CAN'T BE ON WITH THEIR DOCTORS AND OTHER HEALTHCARE PROVIDERS FOR FEAR OF BEING DISCOVERED. HEALTHY LIVING HABITS AREN'T ADOPTED EITHER EARLY ON O POSTPONE ONSET. NOW, USING OUR NEGATIVE EXPERIENCES WITH BEING WISE, AND OUR WISDOM, NOT ONLY DOESN'T PROFIT US BUT IS EVEN USED AGAINST US. HOW MANY OTHER FUTURE DISCOVERIES THAT HAVE THE POTENTIAL TO BLESS THE LIVES OF MILLIONS OF OTHERS BY PREDICTING OTHER DISEASES SOON ENOUGH FOR INDIVIDUALS TO TAKE POSITIVE AXPOPOSITIVE ACTION AGAINST THEM WILL BE THWARTED BECAUSE OF FLAGRANT GENETIC DISCRIMINATION? THANK YOU VERY MUCH.

THANK YOU, MR. HARDT. AND THANK ALL OF YOU FOR YOUR VERY PRO FOUND TESTIMONY. NOW, WE ARE GOING TO OPEN UP TO THE COMMITTEE A QUESTION AND ANSWER PERIOD TO BE ABLE TO DIRECT QUESTIONS TO OUR PANELISTS IF ANY MEMBERS OF THE COMMITTEE WOULD LIKE TO TREK ANDIRECTANY QUESTIONS TO THEM.

I JUST WANT TO JUST AS WE GET INTO THAT JUST SAY TO EVE OF YOU THAT ON BEHALF OF -- EACH OF YOU THAT ON BEHALF OF ALL OF US ON THE COMMITTEE WE APPRECIATE YOUR TAKING THE TIME TO COME AND TALK TO US. I CAN IMAGINE THAT IT IS NOT EASY TO DO WHAT YOU ALL JUST DID AND I WILL ASSURE YOU AS THE -- FROM THE CHAIR'S DESK HERE THAT AS WE GO FORWARD IN OUR WORK WE ARE GOING TO MAKE SURE WE DO EVERYTHING IN OUR POWER TO MAKE IT WORTH YOUR WHILE AND THAT SOMETHING H COME OF THIS. I KNOW YOU GO HOME AND PEOPLE SAY WHAT HAPPENED. WE WILL TRY TO MAKE SURE THAT SOMETHING HAPPENS AS A RESULT OF YOU DOING THIS. BEFORE MY COLLEAGUES GET INTO THE SPECIFICS, A REAL BIG THANK YOU TO YOU ALL.

I ALSO WANT TO THANK ALL OF YOU FOR VERY POWERFUL AND MOVING STORIES THAT YOU HAVE TOLD WHICH CERTAINLY UNDERLINE IN STARK AND COME COMPELLING TERMS THE NEED TO DO SOMETHING ABOUT A SITUATION WHICH GROWS WORSE EVERY DAY. IT IS, I'M SURE, A GREAT DISAPPOINTMENT FOR ALL OF YOU THAT WE HAVEN'T FIXED THIS BY NOW, WHEN THE ARGUMENTS ARE COMPELLING AND WHEN YOU CAN SEE THAT THE LIKELIHOOD OF MORE AND MORE GENETIC TESTING BEING OFFERED IS IN EVERYBODY VISITABLE AND THEREFORE THE LIKELIHOOD OF MORE AND MORE PEOPLE FACING UP TO THE DA DILEMMAS THAT ALL OF YOU HAVE FACED ALMOST BECOMES INEVITABLE. IT SEEMED AS IN THIS WAS GOING TO GET SOLVED AT YET HERE WE ARE. BECKY, FISHER, I KNOW YOU HAVE BEEN AN EFFECTIVE VOICE IN TERMS OF CARRYING THIS PES MESSAGE ON THE HILL. WHAT DO YOU HERE HEAR WHEN YOU SPEAK TO PEOPLE ON THE HOUSE SIDE ABOUT THE IMPORTANCE DOFFING DOING THIS? WHAT IS THE ROAD BLOCK GETTING IN THE WAY NOW? WHAT DO YOU SEE AS THE REASON WHY THIS HASN'T BEEN SOLVED AND WHAT DO YOU SEE AS THE WAY AROUND THAT?

THANK YOU FOR ASKING ME THAT, DOCTOR COLLINS. SOMEONE ELSE ASKED ME THAT ACTUALLY AT THE D.C. CITY COUNCIL. THEY WERE CONSIDERED THE LEGISLATION FOR THE CITY OF WASHINGTON AND MY RESPONSE WASN'T EXACTLY POLITICALLY CORRECT BUT IT IS WHAT I BELIEVE. THE UNITED STATES CHAMBER OF COMMERCE IS THE STRONGEST LOUDEST VOICE SPEAKING OUT AGAINST THIS LEGISLATION. WITHOUT GOING INTO TOO MUCH DETAIL THEY HAVE A LOT MORE MONEY AND THAN MEDICAL LIBRARY AND HEALTH LIFE LIVING IN NORTHERN VIRGINIA AND THIS HE HAVE A LOT MORE CLOUT THAN WE DO. THE ONLY PROBLEM IS THEY DON'T HAVE ANY MORAL AUTHORITY. I STILL GLEEV WE WILL GET IT DONE. WITH ALL DUE RESPECT THE NATIONAL BREAST CANCER COALITION, I THINK THAT THEIR SUPPORT OF THE SENATE BILL WOULD BE A HUGE, HUGE HELP FOR US BECAUSE MOST OF US DON'T REALLY WANT PRIVATE RIGHT OF ACTION. WE JUST WANT THE PROTECTION. SO I WOULD LIKE TO GO ON THE RECORD AS EXPRESSING THAT FOR MYSELF AND FOR LITERALLY HUNDREDS OF PEOPLE THAT I KNOW WHO ARE IN THE SAME BOAT.

THIS IS REALLY TWO PARTS AND IT AGAIN I WISH TO SHARE WHAT HAS BEEN SAID BEFORE. THESE ARE POWERFUL, STRE MPORTANT STATEMENTS THAT ALL OF YOU HAVE MADE AND I APPRECIATE ALL OF THE SACRIFICES THAT YOU HAVE GONE THROUGH BEFORE, YOU AND YOUR FAMILIES AND THE SACRIFICES THAT YOU MAKE JUST TO APPEAR BEFORE US TODAY. SO THANK YOU VERY MUCH. WE AS A GENETICS COMMUNITY AND ALSO AS MEMBERS OF THE PUBLIC HAVE BEEN TOLD THAT GENETIC DISCRIMINATION DOES NOT EXIST E HAVE BEEN TOLD THAT OVER AND OVER. IN FACT, SCHOLARLY ARTICLES HAVE BEEN WRITTEN AND ARE REVENUE RENED IN THE GENETIC LITERATURE WHERE THE AAH THOORS MADE INQUIRIES TO INSURANCE COMPANIES AND GUESS WHAT, THEY SAID THERE IS NO GENETIC DISCRIMINATION. AND YET ALL OF US KNOW THAT IT IS EXISTS AND THAT IS WHY THIS IS SO IMPORTANT TODAY. I WOULD ASK PERHAPS MR. CHAIRMAN, THAT THE NATIONAL CHAMBERS OF COMMERCE BE INVITED AT SOME FUTURE MEETING TO APPEAR BEFORE US SO THAT THEY COULD EXPLAIN WHY IT IS THAT THEY VALUE INDIVIDUALS AS COMMODITIES MORE THAN THEY VALUE THEM AS INDIVIDUALS. BECAUSE I AM, I'M VERY CONCERNED THAT THESE MEMBERS OF OUR COMMUNITIES HAVE THIS AS -- AS SUCH PRO PROFOUND POLICY POSITION TO PROFOUND THAT THEY HAVE PROTECTED THIS BILL FROM LEAVING THE DESK IN THE HOUSE OF REPRESENTATIVES. I DON'T KNOW IF IT HAS LEFT YET. BUT IT -- I MEAN TO BE ABLE TO FREEZE A BILL THAT PASSED UNANIMOUSLY IN THE SENATE WITHOUT LEAVING THE DESK, WE HEARD AT A PREVIOUS MEETING FROM A HOUSE OF REPRESENTATIVES STAFF PERSON THAT THE HOUSE AS TO HAVE SEPARATE HEARINGS, THEY CAN'T SIMPLY RIDE ON THE COATTAILS OF THE SENATE. THERE HAVE BEEN NO HEARINGS BECAUSE IT DID NOT LEAVE THE DESK. AND I WOULD LIKE TO HEAR FROM THE MOST POWERFUL GROUP THAT HAS PROTECTED THAT. WE HAVE ALSO BEEN TOLD IN PREVIOUS MEETINGS AND PIECES IN LITERATURE THAT THERE IS NO NEED FOR LEGISLATION BECAUSE WE ARE ALREADY PROTECTED BY LEGISLATION AND THERE IS THE LITANY OF LAWS THAT ARE CITED INCLUDING THE ADA TO PROTECT INDIVIDUALS AGAINST GENETIC DISCRIMINATION. AND I WAS ASKED AND I SORRY TO PUT YOU ON THE SPOT, DR. MA GEATTY BUT I WOULD ASK HAS THE DEPARTMENT OF JUSTICE EVER GONE THROUGH A SYSTEMATIC REVIEW OF THE CURRENT LEGISLATION TO DOCUMENT THAT IN FACT AS CITIZENS THIS OF COUNTRY WE ARE PROTECTED BY THE EXISTING LAWS?

I'M AFRAID WE HAVEN'T BEEN QUITE EYE APPROACHED TO DO THAT REVIE YET SO I DON'T HAVE ANY SPECIFIC INFORMATION FOR YOU.

WHO WOULD NEED TO APPROACH YOU TO DO THAT REVIEW?

BASICRY THE SECRETARY FOR HEALTH AND HUMAN SERVICES WOULD BE A GOOD STARTING POINT.

WELL, GIVEN THAT WE HAVE BEEN AND THAT I UNTIL RECENTLY HAVE BEEN WRITING LAWS TO TWO SECRETARIES OF HEALTH AND HUMAN SERVICES, IF ANOTHER LETTER FROM THIS COMMITTEE COULD MOVE THAT AGENDA FORWARD AND DETERMINE WHETHER IN FACT WE ARE PROTECTED OR NOT PROTECTED, I WOULD ASK THE COMMITTEE TO GIVE CONSIDERATION TO YET ANOTHER LETTER.

YES, THAT WE WILL TAKE INTO, ONSIDERATION. ALSO FOR THE RECORD JUST TO MENTION THAT THE CHAMBER OF COMMERCE WAS INVITED TO THIS MEETING WITH THE SPECIFIC INVITATION TODAY BUT ACTUALLY REFERRED US TO ANOTHER GROUP WHWHO WE WILL BEHEARING FROM IN THE STAKE HOLDER PANEL.

WHAT IS THE NAME OF THAT GROUP, PLEASE?

THE SEW SOCIETY FOR HUMAN RESOURCE MANAGEMENT.

AND WE HAVE A DOCUMENT FROM THEM ALSO DOCUMENTING THE LAWS THAT EXIST WHICH WAS PART OF THE WHAT PRECIPITATED MY -- MY QUESTION. I WOULD ASK IF THE SOCIETY OF HUMAN RESOURCE MANAGEMENT CONSIDER IS THEMSELVES A SPOKES ERSON FOR THE NATIONAL CHAMBERS OF COMMERCE SO PERHAPS THEY CAN BE PREPARED BECAUSE I WILL BE ASKING THAT QUESTION WHEN THEY SPEAK.

GOOD MORNING. I JOINED MY COLLEAGUES ON THE COMMITTEE IN THANKING EACH AND EVERY ONE OF YOU FOR YOUR COURAGE AND IMPORTANT ADVOCACY IN THIS IMPORTANT AREA. FOLLOWING UP ON DR. MCCABE'S QUESTION ABOUT VARIOUS LAWS AND THEIR COVERAGE, I KNOW SEVERAL OF YOU, I BELIEVE, MS. FISHER AND MS. HIN HEINSTROSA MENTIONED A HPPA GAP AND I WONDERED IF YOU COULD ADDRESS THAT A BIT MORE FROM YOUR PERSPECTIVE? , A I'M PARTICULARLY CURIOUS AS TO WHETHER IT HAS TO DO WITH THE PRIVACY RULE WHICH MY OFFICE WITHIN HHS OFFICE FOR CIVIL RIGHTS IS RESPONSIBLE FOR ENFORCING OR IF IT HAS TO DO WITH OTHER ASPECTS OF HPPA?

WELL, THE PROTECTIONS THAT HEPA BRINGS ABOUT REALLY ARE FOR PEOPLE WHO ARE MEMBERS OF A GROUP PLAN AND DON'T EXTEND TO PEOPLE IN THE INDIVIDUAL MARKETS SO THAT IS AN IMPORTANT GROUP OF OF PEOPLE WHO ARE NOT WELL PROTECTED BY HEPA.

I WOULD JUST LIKE TO ADD TO THAT THAT MY UNDERSTANDING OF THE HEPA GAP IS THAT WELL THE BIGGEST PROBLEM IS IT DOESN'T ADDRESS ANY WORK PLACE CONCERNS AT ALL. BIGGEST PROBLEM. IT ONLY DEALS WITH INSURANCE AND IF YOU ARE JUST CONSIDERING THE INSURANCE PIE THEN THAT PIE IS SLICED UP AGAIN INTO PEOPLE O WHO ARE PROTECTED AND WHO AREN'T PROTECTED. THOSE PROTECTED ARE PROTECTED UNDER GROUP HEALTH INSURANCE PLANS. THIS IS IMPORTANT BECAUSE MOST PEOPLE DON'T UNDERSTAND THIS. HEPA DOES NOT EXTEND TO ERISA ENGERISAEXEMPTED STATE PLANS. 77% OF EMPLOYERS OFFER AT LEAST ONE STATE SELF-FUNDED INSURANCE MAN TO THAT MEANS THAT IF MY HUSBAND WORKS FOR BANK OF AMERICA, WHICH HE DOES, WE HAVE THE CHOICE EVERY NOVEMBER OF GETTING, YOU KNOW, TEN DIFFERENT CHOICES OF PLAN THAT WE COULD SUBSCRIBE TO. WE COULD GO WITH A BLUE CROSS OR AETNA AND BE IN A GROUP HEALTH PLAN OR WE COULD GO WITH BANK OF AMERICA SELF-INSURANCE PLAN. THAT IS BANK OF AMERICA BETTING THAT THEY WILL DO BETTER THAN BLEW CROSS IS WITH THAT MONEY. BLUE CROSS HAPPENS TO ADMINISTER THAT PLAN TO I DON'T REALLY HAVE A CLUE THAT I'M NOT PROTECTED UNDER HEPA. THIS IS A BIG PROBLEM. THERE ARE A HUNDRED MILLION PEOPLE IN THIS COUNTRY WHO ARE HAVING THE SAME PROBLEM AND THEY DON'T EVEN KNOW IT. SO I THINK THIS IS A REALLY IMPORTANT PIECE OF INFORMATION TO GET OUT THERE. DR. COLLINS ASKED EARLIER WHAT WAS THE PUSHBACK ON THE HILL? THE PUSHBACK IS NO PROBLEM, WE DID HEPA. WELL, GUESS WHAT, 2 IT DOESN'T WORK FOR LAST US AND I'M GLAD TO HAVE THE OPPORTUNITY TO TELL YOU ALL THIS BECAUSE MY GUESS IS THAT IT HAS NEVER GOT THAN GRANULAR WITH ANY OF YOU EITHER. THOSE OF US WHO KNOW WHAT WE ARE UP AGAINST KNOW THIS. THANKS FOR ASKING THAT.

ONCE AGAIN, WE WOULD LIKE TO REITERATE WHAT WE HAVE HEARD FROM EVERY ONE OF THE MEMBERS HERE TO THANK YOU VERY MUCH FOR YOUR TESTIMONY. IT CERTAINLY D WE HAVE HEARD YOU AND WE ALREADY HAVE ACTIONS THAT WE WILL BE READY TO TAKE AS WE DISCUSS FURTHER. YES, MS. WILLIAMS?

I WOULD LIKE TO REITERATE, THE FACT THAT A LOT OF PIECE PEOPLE COME FORWARD AND TAKE A CHANCE THAT WHEN THEY GO BACK TO WHEREEVER THEY HAVE COME FROM THAT THEY COULD BE SUMMARILY FIRED, THAT THEY COULD HAVE THEIR INSURANCE POLICIES PULLED FROM THEM. I COME HERE WITH NOTHING TO LOSE, OKAY. THE BA TAKES CARE OF ME ANDISM' ON DISABILITY. I HAVE NOTHING TO LOSE BUT THESE PEOPLE WHO SIT TO MY LEFT HAVE A LOT TO LOSE WHEN THEY GO HOME. AND THEY KNOW THAT. AND THEY COME HERE AT GREAT RISK TO THEMSELVES AND THEIR FAMILIES. AND I WANT EVERYONE TO UNDERSTAND THIS. I WANT THE HOUSE TO UNDERAND IT HIS THAT THERE ARE PEOPLE HERE AT RISK. MY CHILDREN WHO ARE HERE TODAY ARE STILL AT RISK THAT AS THEY GET OLDER AND CHOOSE THEIR CAREERS MY DAUGHTER IS A COMPETITIVE GYMNAST. SHE WANTS TO GLOW UP AND BE A GYMNAST BUT THERE IS A CHANCE THAT SHE COULD BE DISCRIMINATED AGAINST BECAUSE SHE IS A CARRIER OF ALPHA ONE. MY SON WANTS TO BE A RESEARCH SCIENTISTS. HE WANTS TO BUILD HABITATS ON THE MOON. HE IS 10 YEARS OLD. THERE IS A CHANCE THAT WHEN HE GETS TO THAT POINT HE MAY NOT BE HIRED IN HIS CHOSEN FIELD. HE MAY HAVE TO GOD FOR BID FLIP BURGERS AT MCDONALDS THAN LET HIS AT THIS AGELET SEE AT AGE 9 HE WAS CONSIDERED TO HAVE AN ESTIMATED 138IQ, OKAY. AND IT IS A LOT MORE THAN THAT NOW. HE MAY HAVE TO LET HIS CONSIDERABLE IQ GO TO WASTE. AND NOTHING AGAINST MCDONALDS THEY FUND COLLEGE EDUCATIONS ALL OVER THE NATION. BUT MY SON HAS THE POTENTIAL DO GREAT THINGS AND THAT MAY NOT HAPPEN BUT I'M WORE CONCERNED -- I'M MORE CONCERNED WITH THE PEOPLE TO MY LEFT BECAUSE I KNOW WHAT HAPPENS AND I KNOW AND I HAVE SEEN IT AND THAT IS WHAT I WANT EVERYONE TO UNDERSTAND.

WE WILL WORK TODAY NOT TO LET ANY OF YOUR OWN EXPERIENCES GO TO WASTE. THANK YOU. WHAT WE'RE GOING TO DO IS TAKE A BREAK NOW AND THAT WILL BE FOR UNTIL 10:45 AND THEN RECONVENE FOR THE PANEL TWO WHICH WILL BE THE HEALTHCARE PROVIDERS. [ APPLAUSE ]

PLEASE STAKE YOUR TAKE YOUR SEATS SO THAT WE CAN START WITH OUR NEXT PANEL OF PRESENTERS.

OUR SECOND PANEL THEN IS OF HEALTHCARE PROVIDERS AND THE COMMITTEE THEN WILL BE HEARING FROM THEM REGARDING THEIR OWN PATIENTS' EXPERIENCES THAT THEY HAVE BEEN IN CONTACT WITH AND THEY WILL BE TELLING US ABOUT THEIR PATIENTS' CONCERNS ABOUT THE IMPACT OF GENETIC DISCRIMINATION. OUR PANEL THEN WILL BE THREE AND AGAIN THEY WILL EACH HAVE TEN MINUTES TO PRESENT AND WE WILL HAVE TEN MINUTES FOR QUESTIONS AFTER THEIR PRESENTATIONS SO WE WILL BE HEARING FROM JEFF SHAW WHO IS AN ONCOLOGY GENETIC COUNSELOR FROM PENROSE CANCER CENTER IN COLORADO. THEN WE WILL BE HEARING FROM DON HADLEY. A RESEARCHER AT THE NATIONAL IN SISUIT OF HEALTH IN BE THESE DA MARYLAND AND MARK BRANTLY WHO IS A PROFESS OFFER OF MEDICINE AT UNIVERSITY OF FLORIDA. WE BEGIN WITH JEFF SHAW.

MY NAME IS JEFF SHAW AND I'M THE DIRECTOR AND COUNSELOR FOR THE HER HA TARE HEREDITARY CANCER SERVICE IN COLORADO. I DON'T QUITE KNOW WHAT TO DO WITH THIS MUCH OXYGEN. I WOULD LIKE TO THANK YOU FOR GIVING THE OPPORTUNITY TO PRESENT INFORMATION FROM OUR PROGRAM THAT TO THIS COMMITTEE. THE CLINICIANS FEEL THAT YOU WERE A DIFFICULT GROUP TO FOLLOW BUT ONE THING WE HAVE GOT IS NUMBERS SO I HAVE PROVIDED COUNSELING FOR INDIVIDUALS AND FAMILIES IN EVERY AREA OF MEDICAL GENETICS FROM PRENATAL TO ADULT ONSET CONDITIONS. FOR THE LAST SEVEN YEARS I HAVE WORKED EXCLUSIVELY WITH PATIENTS CONCERNED ABOUT HEREDITARY CANCER PREDISPOSITIONS MUCH LIKE THE WOMEN WHO PRESENTED HERE TODAY. THE PURPOSE OF OUR PROGRAM IS TWO-FOLD. ONE, TO PROVIDE THE BEST ESTIMATE OF CANCER RISK SO THAT SCREENING CAN BE APPROPRIATELY MODIFIED SO THAT IF IS CANCER OCCURS IT CAN BE CAUGHT AS SOON AS PROVE POSSIBLE WHEN SURVIVAL IS THE HIGHEST AND TREATMENT TO GO THROUGH. TO REDUCE THE RISK OF CANCER RESPECIALLY IN THOSE WITH AN INHERITED PREDISPOSITION. OW PROGRAM IS CLINICALLY BASED AND BRIDGES THE GAP BETWEEN RESEARCH-BASED PROGRAMS AND THE IMPLEMENTATION OF GENETIC TESTING INTO GENERAL MEDICAL PACK TIGS. ALTHOUGH WE ARE CLINIC ANY BASED AT THE OUTSET WE CREATED A LARGE DATABASE TO COLLECT INFORMATION WE FELT WOULD BE HELPFUL TO THE PROVISION OF OUR SERVICE. THE DATA PRESENTED TODAY COVERS 7 YEARS OF CLINICAL SERVICE TO 00 INDIVIDUALS FOR HA RED TARE I CANCER -- HEREDITARY CANCER PREDISPOSITION. I WILL START WITH THE FEAR OF GENETIC DISCRIMINATION. COUNSELING IS COMPLEX AND TIME CONSUMING. IT INVOLVES, OF COURSE, THE DETAILED FAMILY HISTORY THAT WE TRY AND CONFIRM WITH MEDICAL RECORDS. EDUCATION REGARDING THE DIFFERENCES BETWEEN SPORE RAD DICK, FAMILIAL AND INHERITED CANCER PREDISPOSITIONS AND ALSO THE PSYCHOSOCIAL ISSUES AND FAMILY ISSUES INVOLVED WITH THIS TYPE OF TESTING. AS YOU HEARD, IF YOU TEST ONE INDIVIDUAL THAT INFORMATION IS GOING BE APPLICABLE TO THE ENTIRE EXTENDED FAMILY. IF YOU LOOK AT THE ENTIRE PEOPLE THAT WE SEE 61% OF PATIENTS HAVE A FAMILY HISTORY STRONG ENOUGH TO INDICATE THE POSSIBILITY OF GENETIC TESTING. IF AN INDIVIDUAL IS OFFERED THE POSSIBILITY OF 21ST CENTURY G WE GO THROUGH A LENGTHY -- GENETIC TESTING WE GO THROUGH A LENGTHY PROCESS AND HOW IT ILL APPLY TO THEIR MEDICAL CARE. THE BULK OF THIS DECISION OR THIS DISCUSSION I FEEL I NEED TO BE ALAWYER, UNFORTUNATELY, BECAUSE IT IS STRONG LISTEN TERED AROUND THE CONCERNS OUR PATIENTS HAVE REGARDING GENETIC DISCRIMINATION. NOT ONLY FOR THEMSELVES, BUT FOR THEIR SIBLINGS AND I FIND MOST IMPORTANTLY FOR THEIR CHILDREN. IN OUR PROGRAM'S EXISTENCES, EXPERIENCE, 20% OF THOSE INDIVIDUALS FOR -- WHO ARE ELIGIBLE FOR GENETIC TESTING FOR PRESYMPTOMATIC CANCER PREDICTION DECLINE HAVING THE TESTS. OF THOSE INDIVIDUALS 22% DID SO BECAUSE OF A FEAR OF DISCRIM FAKES. YOU MUST REALIZE THAT THE PEOPLE WHO SEE ME ARE MOTIVATED TO LEARN MORE ABOUT THEIR FAMILY HISTORY. OF INTEREST, THE PATIENTS THAT DID DECLINE BASED ON A FEAR OF DISCRIMINATION 90% OF THOSE HAD A SIGNIFICANT INCREASED RISK FOR OR INCREASED CHANCE FOR TESTING POSITIVE FOR A MUTATION THAT WOULD INCREASE THEIR RISK FOR CANCER. THEREFORE, THE PEOPLE WHO WOULD EXPERIENCE -- EXPERIENCED THE GREATEST POSSIBLE BENEFIT FROM THIS TESTING ARE THE MOST LIKELY NOT TO PURSUE IT. I WOULD LIKE TO GIVE A FEW PATIENT EXPERIENCES BECAUSE SH THESE NUMBERS TAKE ON A PERSONAL TONE IN THE CON CONTEXT OF REAL PEOPLE. I RECENTLY SAW A WOMAN WITH A STRONG FAMILY HISTORY OF CANCER MUCH LIKE THE WOMEN WHO HAVE TALKED EARLIER TODAY. SHE HAD BEEN DIAGNOSED WITH A STAGE ONE BREAST CANCER AT THE AGE OF 46. HER MOTHER DIED OF OVARIAN CANCER AT THE AGE OF 52. TWO MATERNAL AUNTS HAD BREAST CANCER IN THE EARLY 40s AND PASSED AWAY AND HER MATERNAL GRAND MOTHER DIED FROM BEST CANCER AT THE AGE OF 41. WE DETERMINED THAT SHE HAD AT LEAST A 43% CHANCE OF CARRYING AN INHERITED MUTATION THAT WOULD INCREASE HER RISK FOR SECOND PRY PERICANCERS. IF SHE PURSUED THE TESTING AND WAS TERMED TO CARRY ONE OF THE FAULTY GENES SHE WOULD HAVE A 60% RISK FOR A SECONDARY WRES BREAST CANCER. PROPHYLACTIC SURGICAL IN INTERVENTION COULD REDUCE THE RISK FOR THE CANCERS 90% FOR GREATER. IF SHE TESTED POSITIVE EACH OF OTHER FOUR DAWT DAUGHTERS WOULD HAVE A 50% CHANCE TO INHERIT THE FAULTY GENE THAT WOULD INCREASE THE RISK FOR CANCER. SHE HAS DECLINED TESTING AND THIS HAS BEEN VERY EMOTIONAL AND DIFFICULT FOR HER BUT SHE HAS DONE SO BECAUSE SHE IS CONCERNED AS TO HOW THIS INFORMATION COULD AFFECT HER CHILDREN'S CHANCES OF GETTING HEALTH INSURANCE. SHE DOESN'T KNOW WHAT PROFESSION THEY GOING TO GO INTO. SHE DOESN'T KNOW IF THEY WILL BE GROUP OR SELF-INSURED OR WHAT STATE THEY WILL END UP LIVING IN. BECAUSE OF THAT, WITHOUT THE GENETIC TESTING IT IS UNCLEAR HOW TO PROCEED WITH HER MEDICAL CARE, ESPECIALLY THE SURGICAL ONES THAT COULD REDUCE HER RISK FOR CANCER DEVELOPING AGAIN. HOWEVER, WITHOUT DOCUMENTATION OF A MUTATION THAT SHE WOULD CARRY, HER INSURANCE COMPANY WILL NOT PAY FOR ANY OF THESE SURGICAL INTERVENTIONS. THEREFORE, SHE REMAINS IN A STATE OF ANXIETY USING IMPERFECT BREAST AND OVARIAN CANCER SCREENING METHODS AND SIMPLY HOPING THAT ANOTHER CANCER DOES NOT OCCUR. DUE TO HER CURRENT EMPLOYMENT SITUATION SHE MIGHT HAVE TO CHANGE INSURANCE COMPANIES AND IS AFRAID THAT SHE COULD BE DENIED AND WITH THE CURRENT DIAGNOSIS SHE CANNOT AFFORD TO BE WITHOUT HEALTH INSURANCE. ANOTHER PATIENT WE HAD HAD A STRONG FAMILY HISTORY OF FAP. A DOMINANTLY INHERITED CO-RU CO-RUN -- COLON CANCER PREDISPOSITION CHARACTERIZED BY COLOCOLON POLYPS THAT CAN BEGIN AS EARLY AS THE AGE OF 10. INDIVIDUALS WITH THIS CONDITION BASICALLY HAVE UP TO 100% CHANCE OF DEVELOPING COLON CANCER SOMETIME IN THEIR LIFE. HE WORKED HIS WOLE LIFE AT A RELATIVELY -- HIS WHOLE LIFE AT A RELATIVELY SMALL COMPANY WITH A SMALL SELF-DIRECTED GROUP INSURANCE PLAN. HE HAS BEEN WARNED BY HIS DOCTOR NOT TO HAVE GENETIC TESTING FOR FAP AS HE WOULD LOSE HIS JOB OR HEALTH INSURANCE IF THEY WERE TO FIND OUT ABOUT THE CONDITION IN THE FAMILY. AT THE AGE OF 42, HE HAD SIGNIFICANT RECTAL BLEEDING AND FINALLY WENT IN FOR EVALUATION. HE WAS FOUND TO HAVE OVER 400 POLYPS IN HIS COLON. HE WAS SO EXTENSIVE HE NEEDED TO HAVE HIS ENTIRE COLON REMOVED. A DRAS DRASTIC BUT LIVE SAVING TECHNIQUE FOR THESE INDIVIDUALS. LUCKILY, HE DID NOT HAVEIN' INVASIVE COLON CANCER. OTHER FAMILY MEMBERS WERE NOT AS LUCKY. MOST OF THOSE AFFECTED WITH FAP IN HIS FAMILY DIED OF COLON CANCER IN THE LATE 20s. AT THE AGE OF 46 HE CAME TO ME FOR GENETIC COUNSELING. HE HAS TWO CHILDREN, AGES 22 AND 24 AND HE HAD NOT NFORMED THEM OF THE CONDITION PRIOR TO THIS TIME AS HE DID NOT WANT THE FAMILY HISTORY IN THEIR MEDICAL RECORDS DIE TO A FEAR OF GENETIC DISCRIMINATION. UNFORTUNATELY, THIS MEANT THAT THESE EARLY 20-YEAR-OLD CHILDREN WERE NOT HAVING APPROPRIATE SCREENING WITH SEVERAL GENETIC COUNSELING SESSIONS WITH HIM AND HE FINALLY DECIDED THAT HE WOULD DO THE TESTING EVEN WITH HIS FEAR OF THE DISCRIMINATION IN ORDER TO HAVE APPROPRIATE MEDICAL CARE FOR HIS KIDS. HE WAS TESTED AND THE GENETIC MUTATION IN THE APC GENE THAT WAS CAUSING FAP IN HIS FAMILY WAS IDENTIFIED. HIS CHILDREN DECIDED TO HAVE TESTING. ONE CHILD HAS TESTED POSITIVE AND ONE CHILD HAS TESTED NEGATIVE. THE 22-YEAR-OLD THAT TESTED POSITIVE IS NOW HAVING APPROPRIATE SCREENING BUT ALSO LIVES IN FEAR THAT AT SOME POINT SHE COULD LOSE MER MEDICAL INSURANCE. THE FEAR OF GENETIC DISCRIMINATION IN THIS FAMILY COULD HAVE CAUSED THE SAME EARLY DEATHS IN HIS IMMEDIATE FAMILY AS IT DID IN HIS EXTENDED FAMILY. I JUST SAW A 24-YEAR-OLD PATIENT WHOSE MOTHER TESTED POSITIVE FOR A MUTATION IN ONE OF THE BREAST OVARIAN CANCER SUPPRESSOR GENES. SHE DID NOT HAVE TESTING BASED ON A FEAR OF DISCRIMINATION. SHE WAS DIAGNOSED WITH A STAGE THREE BREAST CANCER AND DIED IN JUNE. SHE FINALLY HAD THE TESTING DONE AND A MUTATION WAS IDENTIFIED. THEREFORE WE COULD KEEPLY TEST HER THREE CHILDREN TO SEE IF THEY, INDEED, INHERITED THIS MUTATION OR NOT. ALL THREE CHILDREN DECIDED THEY DID WANT TO BE TESTED BECAUSE THEY FELT IT WAS UPON TORE THEIR CARE. ALL THREE CHILDREN PAID FOR THIS TEST OUT OF POCKET TO KEEP THIS INFORMATION AS CONFIDENTIAL AS POSSIBLE. IN FACT, WHEN WE LOOK AT INDIVIDUALS WHEN THE CHEAPER TESTS CAN BE PERFORMED THIS IS ABOUT $350 WHEN A MUTATION HAS BEEN IDENTIFIED IN A FAMILY. 74% OF THOSE INDIVIDUALS WILL PAY OUT OF POCKET BECAUSE OF THEIR FEAR OF GENETIC DISCRIMINATION. UNFORTUNATELY, IF YOU ARE THE FIRST PERSON BEING TESTED IN THE FAMILY THE TEST COSTS ABOUT $3,000, MAKE THAT REALLY NOT AN OPTION FOR THE BULK OF INDIVIDUALS THAT WE SEE. ALTHOUGH SHE HAS INFORMED HER FAMILY ABOUT THIS MUTATION WELL OVER 50% HAVE DECIDED NOT TO BE TESTED BASED ON A FEAR OF DISCRIMINATION. ALTHOUGH ANECDOTAL MY EXPERIENCE WITH HUNDREDS OF FAMILIES SHOWS ME THAT THAT IS THE CASE FOR MANY OF THESE FAMILY MEMBERS. WHAT ABOUT AFTER TESTING? WE CONDUCT ONE YEAR FOLLOW-UP SURVEY IS OF ALL PAY SHENS SEEN BY OUR PROGRAM. WE ARE HAPPY WE HAVE A 72% RESPONSE RATE TO THE SURVEYS. OF THOSE PATIENTS WHO TESTED POSITIVE FOR AN INHERITED CANCER PREDISPOSITION, 70% REPORT HAVING CONTINUED SIGNIFICANT ANXIETY THAT THEY WOULD EXPERIENCE GENETIC DISCRIMINATION AT SOME POINT IN THE FUTURE. FEAR OF FUTURE GENETIC DISCRIMINATION REMAINS A REAL CONCERN FOR OUR PATIENTS, ESPECIALLY THOSE WHO HAVE TESTED POSITIVE. THEN WE ARE WONDERING ABOUT THOSE PEOPLE WHO DON'T EVEN MAKE IT FOR GENETIC COUNSELING. DHE DON'T EVEN GET -- THEY DON'T EVEN GET TO THE POINT OF BEING OFFERED TESTING. IN ADDITION TO A FEAR OF GENETIC DISCRIMINATION THERE IS ALSO FEAR OF DISCRIM DISCRIMINATION SIMPLE FROM FROM PARTICIPATING IN A GENETIC COUNSELING SESSION. IN 2001 STUDIED FACTORS THAT WOULD INFLUENCE AN INDIVIDUAL'S DIVISION NOT TO COME IN FOR -- DECISION NOT TO COME IN FOR GENETIC COUNSELING. THE BIGGEST REASON OF THE FEAR OF GENETIC DISCRIMINATION, ACCOUNTING FOR 46% OF THOSE INDIVIDUALS SURVEYED. OUR PROGRAM HAD A SIGNIFICANT NUMBER OF PHYSICIAN REFERRED INDIVIDUALS WHO DID NOT SHOW UP FOR THE APPOINTMENTS. WE WANTED TO SEE INFORMALLY IF THIS WAS A CONCERN FOR THE PEOPLE REFERRED TO OUR PROGRAM. WE CONDUCTED AN INFORMAL 6 MONTH SURVEY OF THOSE PATIENTS. IN THE TIME FRAME WE HAD 60 PAY ENTS THAT DID D. SHOT SHOW. IS A% WOULD NOT RETURN THE CALLS 15% WOULD NOT RETURN THE CALLS AND 40% SAID THEY WERE TOLD THEY SHOULD NOT HAVE THIS DOCUMENTED IN THE MEDICAL CHART BECAUSE OF GENETIC DISCRIMINATION. I WAS UNABLE TO GET THE BULK OF THE PEOPLE IN FOR AN APPOINTMENT. THIS SUSUPPORTS THE DATA SEEN IN A GREER STUDY AND A FEAR OF GENETIC DISCRIMINATION IS A BARRIER FOR INDIVIDUALS THAT COULD BENEFIT GREATLY FROM GENETIC COUNSELING AND TESTING FOR HA HA RAID TERRI CANCER PREDISPOSITIONS.

WHEN I BRAD GRADUATED THERE WERE A HANDFUL OF TESTS AVAIL BLE. IN 2004 THERE ARE OVER 1,000 GENETIC TESTS AVAILABLE ON A CLINICAL AND RESEARCH BASIS. THE NUMBER OF GENETIC TESTS THAT WILL BECOME AVAILABLE FOR SINGLE GENE AND COMPLEX DISORDERS IS EXPECTED TO INCREASE EXPONENTIALLY OVER THE NEXT DECADE. I FEEL THAT WITHOUT STRONG FEDERAL PROTECTION TH APPROPRIATENESS OF THESE TESTS WILL BE UNDERUTILIZED. NONE OF US ARE GENETICALLY PERFECT. LEARNING WHAT GENETIC IMPER FEXZIMPERFECTIONS WE HAVE INHERITED AND IS DIFFICULT SOMETIMES FRIGHTENING AND A LIFE CHANGING EXPERIENCE. THE DECISION TO HAVE PRESYMPTOMATIC GENETIC TESTING IS MULTIFACETED. ISSUES REGARDING ONE'S SENSE OF SELF, FAMILY RELATIONSHIPS, ANXIETY, DEPRESSION AND COMPLEX DECISIONS REGARD GED FUTURE MEDICAL CARE. THE CITIZENS OF OUR COUNTRY NEED TO BE ASSURED WHEN DECIDING WHETHER OR NOT TO PURSUE GENETIC TESTING A FEAR OF DIVIDENDS IS NOT -- GENETIC DISCRIMINATION IS NOT A FACTOR. THANK YOU NOR YOUR KIND ATTENTION AND I LOOK FORWARD TO YOUR QUESTIONS.

THANK YOU PL SHAW. HE WILL HEAR NEXT FROM CON DONALD HADLEY.

THANK YOU. I'M AN SOTSIATE INVESTIGATOR AND GENETIC COUNSELOR AT THE NATIONAL GENOME INSTITUTE AT THE NIH. MY PROFESSIONAL EXPERIENCE AND WORK HAS FOCUSED PRIMARILY ON PROVIDING EDUCATION AND COUNSELING TO FAMILIES WHO ARE THREATENED WITH GENETIC AND INHERITED DISEASES. I HAD THE PRESIDENT CLINTON PRIVILEGE OF WORKING WITH THESE FAMILIES FOR THE LAST 23 YEARS. GSH PRESIDENT PRIVILEGE OF WORKING WITH THESE FAMILIES. WAR GOAL WAS TO DEVELOP RESEARCH THAT FOCUSED ON IDENTIFYING FACTORS THAT IN FLEW WENED THE INTERESTS IN AND UPTAKE OF GENETIC COUNSELING AND TESTING AND THE ASSOCIATED PSYCHOLOGICAL, SOCIAL AND BEHAVIORIALOUT COMES. THE RESEARCH AGENDA WAS INSPIRE BY THE EYE IDENTIFICATION OF A RAPIDLY GROWING NUMBER OF GENES THAT PREDISPOSE OR INCREASE CERUS SEPTEMBERIBILITY TO DISEASE. MY RESEARCH SP EUF SPECIFICALLY FOCUSED ON FAMILIES DIAGNOSED WITH HNPCC AND FAMILIES WHO SPECIFICALLY HAVE DILL TEAROUS MUTATIONS IDENTIFIED. THE IDENTIFICATION OF FAMILIES WITH AHNPCC MUTATION ALLOWED THE OPPORTUNITY TO LEARN FROM THEM' AFTER AND DURING THE GENETIC COUNSELING AND THE OFFER OF GENETIC TEST. WE FELT IT WAS YES, NECESSARY TO PLAN FOR A FUTURE WHEN GENETIC TESTING WILL BE MORE ROUTINELY USED TO REPRESIDENT PREDICT FOR RARE AS WELL AS COMMON DISEASES IN THE GENERAL POPULATION. WITHIN THE STUDY ONCE A FAMILY IS IDENTIFIED TO CARRY A MUTATION WE SEQUENTIALLY OFFER PARTICIPATION TO FIRST-DEGREE ADULT RELATIVES AT 50% RISK OF INHERITING THE MUTATION. IT INCLUDES THE PROVISION OF COME PREHEN SIV GENETIC EDUCATION AND COUNSELING ABOUT HNPCC AND THE OPTION OF GENETIC TESTING. FOR THOSE ELECTING TO PURSUE THE TESTING THE CLINICAL CENTER PAYS FOR THE GENETIC STUDIES REMOVING THE ISSUES OF COST AND INSURANCE COVERAGE FROM THE DECISION-MAKING PROCESS. HOWEVER, PRIOR TO THE EDUCATION AND COUNSELING SESSIONS WE ASK PARTICIPANTS TO COMPLETE A QUESTIONNAIRE THAT COLLECTS DEM GRAPHIC INFORMATION, INFORMATION ABOUT THEIR KNOWLEDGE OF GENETICS AND GENETIC TESTING AND PERCEIVED CANCER RICKS AND STANDARDIZED SCALES ASSESSING MOOD, COPING STYLE, SPIRITUALITY AND THEIR PERCEPTION OF THEIR OWN CONTROL OVER HEALTH ISSUES AND FAMILY RELATIONSHIPS. ADDITIONALLY WE ALSO ASK THEM TO SPECIFICALLY IDENTIFY WHAT FACTORS MOTIVATE THEM TO CONSIDER GENETIC TESTING SUCH AS THE DESIRE TO CLARIFY THEIR RICK OR CHILDREN'S RISK FOR CANCER OR GUIDE THE CANCER SCREENING. LIKE WISE, WE ALSO ASKED THEM TO IDENTIFY FACTORS THAT CONCERN THEM ABOUT UNDERGOING GENETIC TESTING SUCH AS EMOTIONAEMOTIONAL CONCERNS ABOUT HANDLING THE RESULTS FOR THEM ELVES OR FOR OTHER FAMILY MEMBERS. THEIR LEVEL OF CONFIDENCE IN THE PREVENTION STRATEGIES THAT EXIST AND THEIR CONCERNS ABOUT TEST RESULTS AFFECTING INSURABILITY. THESE QUESTIONS ARE ASKED INDIVIDUALLY SO WE MIGHT OBTAIN A LEVEL OF SIGNIFICANCE FOR EACH ISSUE. IN ADDITION WE ASK THE PARTICIPANTS TO IDENTIFY THE MOST IMPORTANT REASON FOR THEM TO CONSIDER TESTING AND LIKE WISE THE GREATEST CONCERN THEY HAVE IN CONSIDERING TESTING. ALL THE QUESTIONS ARE VALLEY MEASURES -- VAL DATED MEASURES ELDEVELOPED AND USED BY THE CANCER CONSORTIUM OF THE ETHICAL LEGAL AND SOCIAL IMPLICATIONS PROGRAM. AS WE BEGAN TO TALK INDIVIDUALLY WITH EACH PARTICIPANT DESCRIBING THE INTENT OF THE STUDY AND PROCESS INVOLVED ONE KEY ISSUE WAS CONSISTENTLY IDENTIFIED AND THAT WAS POSED IN THE FORM OF A QUESTION. HOW MIGHT PARTICIPATION IN THIS STUDY AFFECT MY INSURANCE OR THAT OF MY FAMILY. THE QUESTION SAME UNSOLICITED IN THE BEGINNING OF THE INFORMED CONSENT PROCESS. THIS QUESTION AND ASSOCIATED WORRY SEEMED TO PERSIST EVEN AFTER WE PROVIDED EACH PAR PARTICIPANT OF INFORMATION THAT REASSURED THEM OF THE CONFIDENTIAL NATURE OF THE STUDY THAT THE STUDY HAD A CERTIFICATE OF CONFIDENTIALITY ISSUED BY THE NATIONAL INSTITUTE OF HEALTH, ALL ARE EYE SIGNED STUDY ID CODES THAT REMOVES INFORMATION FROM THE DATA AND THE TEST RESULTS AND THE COSTS ARE PAID FOR BY THE STUDY SO INSURERS ARE NOT INVOLVED AND RECORDS ARE PROTECTED AND ARE ONLY RELEASED IF INFORMATION IS RETAINED BY THE PARTICIPANTS. NEVERTHELESS, IT WAS CLEAR THERE WAS AN OVERWHELMING CONCERN SNED IN SOME CASES A PALPABLE ANXIETY ABOUT THE IMPACT OF GENETIC TESTING ON HEALTH INSURANCE. THESE CONCERNS DOMINATE THE INFORMED CONSENT PROCESS AND OCCUR SESSION AFTER HE IS' SESSION. I SPECIFICALLY FERREL ONE YOUNG WOMAN AND HER MOTHER BOTH OF WHOM EXPERIENCED UTERINE AND COLON CANCERS AT YOUNG AGES WITH A FAMILY RIDDLED WITH HNPCC CANCERS. EVEN THOUGH THE YOUNG WOMAN EXPERIENCED CANCER TWICE AND FELT THERE WAS LITTLE RESIDUAL DISCRIM THAT TORRE RISKS TO HER SHE WAS IMMOWMOBILIZED ABOUT THE POTENTIAL GENETIC TEST RESULTS BRANDING HER FAMILY AS UNINSURABLE. SHE OPTED TO WAIT ON TESTING BUT WOULD PERIODICALLY CALL TO DISCUSS THE SAFEGUARDS. SHEAF WASED SHE WASED ADMITTEDLY TORTURED ABOUT THE CONCERNS. SHE YOUR HONOR ARED TO PURSUE -- HEY RETURN THE TO TESTING KNOWING THAT THE RESULTS MAY WELL PREVENT OTHERS FROM EXPERIENCING WHAT SO MANY IN HER FAMILY HAD ALREADY ENDURED. SEQUENCING EFFORTS IDENTIFIED A MUTATION PROVIDING A MEANS TO IDENTIFY THE CANCER RISK AND FOCUS THE CANCER SCREENING AND CONSIDER PREVENTATIVE STEPS SUCH AS FOE FA LACTIC SURGERY. WE ANTICIPATED WE WOULD BE HEARING FROM A FEW OF THE FAMILY MEMBERS. THERE WERE NO CALLS, NO E-MAILS AND NO LETTERS. THROUGH FOLLOW-UP WE LEARND THAT SHE HAD SAIRED THE SHARED THE RESULTS WITH THE FOUR SISTERS AND THEY EXPRESSD THAT THEIR CONCERNS REGARDING DISCRIMINATION WERE TOO GREAT TO SAFELY ALLOW THEM TO PARTICIPATE IN A GENETIC COUNSELING STUDY WITH THE OPTION OF GENETIC TESTING. THEY WERE WORRIED ABOUT WE BEING IN SMALL COMPANIES WITH LIMITED INSURANCE OPTIONS AND THE ASSOCIATED RISKS THAT GENETIC TESTING POSED FOR THEM AS WELL AS THEIR CHILDREN. WE STEP BACK FROM THAT EXPERIENCE AND WONDERED HOW PERVASIVE IS THE THREAT OF GENETIC DISCRIMINATION? IN 2003 WE PUBLISHED A PAPER IN THE ARCHIVES OF INTERNAL MEDICINE WHICH I BROUGHT ALONG FOR YOUR CONSIDERATION. IN THE PAPER WE REPORTED ON ATTITUDES, INTENTIONS AND UPTAKE OF GENETIC TESTING OF INDIVIDUALS WITHIN THESE FAMILIES. OF PARTICULAR RELEVANCE TO THIS GROUP WERE OUR FINDINGS REGARDING THE LEVEL OF CONCERN THAT EXISTS WITHIN THESE FAMILIES ABOUT PARTICIPATING IN A GENETIC COUNSELING AND TESTING RESEARCH STUDY. THE QUESTIONS THAT WE USED TO IDENTIFY THE CONCERNS REGARDING GENETIC TESTING ARE ALSO INCLUDED IN THE PACKET BEFORE YOU. IN LOOKING SPECIFICALLY AT WHAT FACTORS INFLUENCE DECISIONS WE IDENTIFIED AND PUBLISHED THAT 39D% OF PARTICIPANTS REPORTED THAT THE MOST PRESSING CONCERN WAS THE WORRY ABOUT THE POTENTIAL OF A GENETIC TEST RESULT AFFECTING THEIR OR THEIR FAMILY'S INSURABILITY. I LOOKED AT THE DATA TO SEE IF THE LEVEL OF CONCERN HAS HELD TRUE FROM THE EARLIER ANALYSIS SINCE WE ADDED 80 ADDITIONAL PARTICIPANTS. I FOUND THAT THE CURRENT DATA SUGGESTS THE NUMBER IS SLIGHTLY HIGHER THAN ORIGINALLY PUBLISHED. NOW, ABOUT 43% IDENTIFYING THAT THE GREATEST CONCERN REGARDING TESTING PERTAINS TO THE CONCERNS ABOUT DISCRIMINATION. ON FOLLOW-UP AT 6 AND 12 MONTHS A GREATER PROPORTION OF THEM IDENTIFIED DISCRIMINATION AS A SINGLE MOST WORRISOME FACTOR, SPECIFICALLY AT 6 AND 12 MONTHS, 48 AND 54% RESPECTIVEL IDENTIFIED CONCERNS ABOUT GENETIC DISCRIMINATION BY THEIR INSURER AS THEIR PRINCIPAL CONCERN. OBVIOUSLY THIS CONCERN IS NOT GOING AWAY WITH TIME AND ADJUSTMENT TO THE JUT COME OF TESTING. THIS SEEMS SURPRISING SINCE RESEARCH FROM OTHER STUDIES FOCUSED ON PRESYMPTOMATIC AND CERUSUSCEPTIBLE TESTING DEMONSTRATE THAT OTHERS SEEM TO RETURN TOO PRETEST LEVEL FROM A YEAR OUT OF TESTING. WHAT IS DIFFERENT ABOUT THE CONCERNS REGARDING INSURANCE? IF PEOPLE HAVE NOT ACHIEVED WHAT THEY PERCEIVE AS DISCRIM NATION WHAT ARE THERE CONCERNS? PARTICIPANTS Z HAS ANY ONE IN THE STUDY EVER REPORTED DISYIP NATION ON THE PART PART OF THE INSURANCE COMPANY OR EMPLI PLOYER. APPARENTLY JUST REASSURING THEM THAT THE DISCRIMINATION IN GENERAL AND WIN OUR STUDY IS NOT THE NORM DOESN'T HELP. THERE IS A PERVASIVE MISTRUST THAT SEEMINGLY WORSENS WITH TIME. IN SUMMARY, THE PRE VAU VALENCE OF GENETIC DISCRIMINATION BY INSURANCE COMPANIES DOES NOT APPEAR TO BE THE KEY ISSUE. THE ISSUE IS THE PUBLIC PERCEIVES THAT THE GENETIC DISCRIMINATION IS AN OVERWHELMING RISK AND IN MY PERNEXPERIENCE THIS PROVIDES A BARRIER TO GENETIC RESEARCH AND CLINICAL CARE AND IT LIMITS POE TEMPERATURES FOR -- POTENTIAL FOR RESEARCH. THE GREATEST TRAGEDY, HOWEVER IS THE MISSED OPPORTUNITY TO PREVENT CANCER OR DIAGNOSE IT EARLY IF PERSONS AT HIGH RISK WHO ARE UNWILLING TO RISK THE POTENTIAL OF DISCRIMINATION. PROVIDING FEDERAL LEGISLATION PROHIBITING GENETIC DISCRIMINATION WILL REASSURE THE PUBLIC THAT GENETIC DISCRIMINATION IS NOT A RISK, PROVIDE AN INCREASED OPPORTUNITY TORE RESEARCH TO ADDRESS OTHER SIGNIFICANT ISSUES AND REDUCE MORTALITY AND MORMORED BIDITY. THANK YOU FOR THE OPPORTUNITY TO PRESENT OUR WORK.

THANK YOU, MR. HADLEY. THE LAST OF THE HEALTH CARE PROVIDERS IS MR. MARK BRANTLY.

I WOULD LIKE TO THANK THE COMMITEE FOR INVITING ME TO COME AND SPEAK. MY NAME IS MARK BRANTLY. I'M A PULMONARY PHYSICIAN AND PHYSICIAN SCIENTIST AT THE UNIVERSITY EVER FLORIDA. I HAVE BEEN INVOLVED IN LPHA TESTING SINCE IS THE 83 AND TESTED ABOUT 20,000 INDIVIDUALS AND IDENTIFIED # 2,000 INDIVIDUALS OVER THE LAST 20 YEARS AND IN RECENT YEARS I HAVE BEEN TESTING APPROXIMATELY 5-6,000 PATIENTS FOR YEARS FOR ALPHA DEFICIENCY. AT UNIVERSITY OF FLORIDA AND HAVE FIRST HAND EXPERIENCE REGARDING THE IMPACT OF THIS DIAGNOSIS ON THEM PERSONALLY AND ALSO THEIR FAMILIES. LET ME BEGIN BY GIVING A BRIEF EXPO SAY OF ALPHA IMMUNOTRIP SIN LEVEL AND A PI TYPE OR GENE KNOW TYPE. ONE OF THE MORE COMMON GENETIC DISEASES WITH THE FREQUENCY OF 1 IN 3,000 TO 400. THE FINE FOE PHENOTYPE IS PIE MARELY LIVER DISEASE ANN ASSOCIATED A RAPID DECLINE IN LUNG FUNCTION. IT IS ONE OF THE CLASSIC GENES IN WHICH THERE IS AN ENVIRONMENT AND A GENE INTERACTION THAT IS THAT THE SLIDES LOSE FUNK FUNCTION FASTER WHEN THEY SMOKE CIGARETTES. IMPORTANT MR. N. MY CLINIC POPULATION I HAVE INDIVIDUALS THAT ARE 80 YEARS OLD WITH PRO FOUND THAT ARE LIVING ACTIVE LIVE PS. PREVENTION OF BEHAVIORS AND INTERAXEINTERACTIONS IS CRITICAL ASPECT OF THE DISEASE. IT IS NOT ABOUT HAVETH EXPENSIVE AROUND. PEOPLE CAN LIVE WITHOUT HAVING DISEASE IF THEY WERE IDENTIFIED EARLY AND WE ARE ABLE TO PROTECT THEM. EARLY DIAGNOSIS AND PREVENT ATIFF CARAATIVE CARE ARE CRITICAL. IN THE STATE OF FLORIDA THERE ARE 9,000 INDIVIDUALS WITH COPD AND 9,000 DIAPER YEAR. ALMOST A THOUSAND HAVE AT RISK ALLELES. IN THE STATE OF FLORIDA WE HAD A PROGRAM IN WHICH WE HAVE DONE TARGETED DETECTION. WE FIRST BEGAN BY ESTABLISHING A CONSENSUS AMONG THE COMMUNITY WITH THE HELP OF THE ALPHA ONE FOUNDATION THAT DEFENDANTING EXCEEDED THE RISK OF TESTING WE ESTABLISHED A HIGH THROUGHPUT LANT AND PROVIDED PROFESSIONAL AND LAY EDUCATIONAL MATERIALS TO DEAL WITH SOME OF THE EDUCATIONAL MATERIALS SOS ASSOCIATED WITH THE DIAGNOSIS. WE DEVELOPED AN EASY TESTING SYSTEM WHICH PATIENTS CAN PATRIOTIC THEIR FINGER AND SENT IT TO THE CENTRAL LABORATORY. YET WE STILL HAVE SIGNIFICANT BARRIERS TO TESTING THESE INDIVIDUALS DESPITE MAJOR RECOMMENDATIONS FROM THE MAJOR THORACIC SOCIETIES RIDGING A CATEGORY A RECOMMENDATION FOR TESTING. THESE BARRIERS INCLUDE GENETIC DISCRIMINATION AND PARTICULARLY FEAR OF GENETIC DISCRIMINATION IGNORANCE REGARDING THE DISEASE AMONG THE PHYSICIAN POPULATION. WE ALSO ESTABLISHED TERTIARY CARE REFERRAL SYSTEMS TO MAKE SURE THAT THEY HAVE SOME PLACE TO GO WITH THE PATIENTS. SO WE HAVE YET STILL AN IMPORTANT JOB AND THAT IS TO BE ABLE TO INSTEAD RIGHT NOW WE HAVE 5,000 INDIVIDUALS THAT ARE IDENTIFIED WITH ALPHA IMMUNOATRIP SEEN DEFICIENCY. IF THEY WERE IDENTIFIED EARLY OON THEY PERHAPS COULD BE PROTECTED FROM DEVELOPING DISABILITY. ONE OF THE APPROACHES IS A COATED TESTING TRIAL. FUNDED ENTIRELY BY THE ALPHA ONE FOUNDATION AND A LONGITUDINAL STUDY LOOKING AT THE REASONS WHY PEOPLE DO NOT WISH TO BE TESTED THROUGH THEIR PHYSICIAN. WE HAVE TEST THE NOW MORE THAN 3,300 INDIVIDUALS FOR IN THIS TESTING PROGRAM AND HAVE DONE INITIAL LONGITUDINAL FOLLOW-UP. I PROVIDED YOU WITH A MANUSCRIPT WITH THE RESULTS. I WOULD LIKE TO FOCUS IN ON A COUPLE OF THINGS RECENTLY WE HAVE DONE. THE FIRST ONE IS THE RISK AND BENEFITS OF GENETIC TESTING. 33% SAID THAT THE REASON WHY THEY CHOSE THE TESTING TRIAL WAS BECAUSE OF FEAR FOR LOSING THEIR HEALTH INSURANCE OR HIGHER HEALTH INSURANCE COST TS. THE OTHER THING IS IN THE POST TEST WHO WOULD YOU GIVE YOUR RESULTS TO? NOT SURPRISINGLY THEY WOULD GIVE THE RESULTS TO THE CHILDREN AND SPOUSE AND NOT SURPRISINGLY THEY WOULDN'T GIVE IT TO THE EX-SPOUSE.

( LAUGHTER ).

IN ADDITION, THEY WOULD NOT PROVIDE IN INFORMATION TO THEIR HEALTH INSURANCE COMPANIES OR THEIR LIFE INSURANCE COMPANIES AND, INDEED, ONLY ABOUT 16% WOULD DISCLOSE THAT. SADLY, THOUGH, I HAVE TO SAY THAT ONLY 80% OF THESE INDIVIDUALS THAT WERE PRO FOUNDLY DEFISH SHENT WOULD EVEN THEY WILL THEIR PERSONAL PHYSICIAN AND THAT IS PROBLEMATIC AS AS FAR FAR AS I'M CONCERNED. FINALLY, ONE OF THINGS THAT THIS STUDY I THINK BRINGS UP IN CLOSE CONTRAST IS THAT WHEN PATIENTS WERE DIAGNOSED WITH ALPHA ATRIP SEEN IMMUNODEFICIENCY ONE OF THE THERAPIES IS TO DO SPOKING CESSATION. WHILE THERE WAS A TREND FOR THEM QUITTING SMOKING THIS WAS NOT SIGNIFICANT. IN ACTUALITY, IT WAS HIGHER FOR ALPHA IMMUNOATRIP SEEN DEFICIENCY INDIVIDUALS STILL A LARGE PORTION GREATER THAN 80% DID NOT QUIT SNOW COVERING. Y CLINIC I HAVE A 95% QUIT RATE FOR CIGARETTE SMOKING. THE NATIONAL AVER AVERAGE IS 10%? I HOUND THESE PATIENTS TO DEATH. I SCHEDULE THEM FOR APPOINTMENTS TO SEE ME EVERY MONTH AND THE NUTS HASSLE THEM -- NURSES HASSLE THEM. GETTING THEM TO QUIT SMOKING IS ONE OF THE MOST IMPORTANT THINGS THAT I CAN DO. WE WE HAVE TO RESORT TO CODED TESTING AND WE LEAVE OUT THE PHYSICIAN AND HEALTHCARE PROVIDER IN HELPING THESE INDIVIDUALS COPE WITH AND MAKE THESE CHANGES WE SHORT CHANGE THEM IN A BIG WAY. WE SHORT CHANGE THEM BECAUSE THEY ARE AFRAID BECAUSE THEY CAN'T TEST OUR SYSTEM TO PROTECT THEM AND GIVE THEM THE CORRECT INFORMATION. THERE IS ONLY ONE DIFFERENCE BETWEEN MY PATIENTS AND ME. WE ALL AS COMPLEX GENETIC ORGANISMS HAVE FIVE TO 15 QUOTE UNQUOTE LETHAL MUTATION PS MAY BE ASSOCIATE THE WITH OUR DEMICE OR DISABILITY. THE -- DEMISE OR DISABILITY. THE DIFFERENCE FINE ME AND MY PATIENTS IS I DON'T KNOW ABOUT MINE. MY PAIENTS NO ABOUT THEIRS AND HAVE THE ABILITY TO DO RISK PREVENTION. THANK YOU VERY MUCH.

THANK YOU FOR ALL YOUR TESTIMONY AND IT CONTINUES TO CLARIFY THE THAT GENETIC DISCRIMINATION AND ESPECIALLY THE FEAR OF GENETIC DISCRIMINATION IS VERY REAL. WE ARE GOING TO OPEN IT UP NOW AGAIN TO THE COMMITTEE MEMBERS TO ASK OUR HEALTHCARE PROVIDER PANEL ANY QUESTIONS THAT THEY MAY HAVE. BRAD?

SO IT IS ASTOUNDING HOW PEOPLE'S BEHAVIOR DIDN'T CHANGE IN THE LAST STORY EVEN AFTER THEY HAVE THE GENE OH TYPE AND KNOW THE RISK. DID ANY OF YOU ASK THE PARTICIPANTS WHOSE WEARY OF SHARING THE INFORMATION OR PERSPECTIVES BEING TEST -- PARTICIPANTS BEING TESTED IF THEY WOULD IN FACT DO SO IF THERE WAS A LAW THAT PRO VEKTED THEM? IS IT CLEAR TO YOU THAT TOMORROW WE ANOWRCHS ANNOUNCE THERE IS A SOLID LAW THAT SAYS YOU CAN'T DISCRIMINATE THAT THESE PEOPLE WOULD SUDDENLY THEN ALL TIP AND ALL BE WILLING TO PARTICIPATE AND TAKE THE RISK OR WOULD THERE STILL BE QUITE A BIT WITT F PAIR NOW THAT?

I THINK THIS WILL BE PEOPLE WHO WON'T PARTICIPATE FOR OTHER REASONS. IT IS NOT GOING TO BE 100% OF THE PEOPLE WHO DON'T PARTICIPATE THAT HAVE INSURANCE CONCERNS AS THE MAJOR FOCUS. SOME WILL IS STILL BE OUT THERE NOT ARE PARTICIPATING. NOT GETTING INFORMATION AND NOT CONSIDERING TESTING. IT IS CLEAR FROM BOTH A QUALITATIVE PERSPECTIVE AND FROM TALKING WITH THESE PEOPLE IN THE CLINIC AS WELL AT KWAN TAYTIVE THAT THIS IS A -- QUANTITATIVE THAT THIS IS A FEAR AND IF Q3 COULD SAY THERE ARE FEDERAL LAWS THAT PREVENT DISCRIMINATION BY INSURANCE COMPANIES AND EMPLOYERS THAT THAT WOULD BE REMOVED, THAT THAT CONCERN WOULD BE TAKEN OFF THE TABLE AND THEN WE WOULD HAVE BETTER OPPORTUNITIES TO FOCUS OUR EFFORTS TOWARDS THEM HELPING THEM TAKE BETTER CARE OF THEMSELVES THROUGH SCREEN OR DIETS WHAT WHATEVER EXISTS. IF THER