Genetic Testing and Research

Aug 31, 2009

National Academy of Sciences

The National Research Council and Institute of Medicine held a symposium to explore the health, policy, and ethical implications of direct-to-consumer genetic testing. Scientists in panel four addressed genetic testing and research. Among the topics they discussed were information access, ownership of genetic information, and genetic .. Read More
The National Research Council and Institute of Medicine held a symposium to explore the health, policy, and ethical implications of direct-to-consumer genetic testing. Scientists in panel four addressed genetic testing and research. Among the topics they discussed were information access, ownership of genetic information, and genetic information as a private commodity. Panelists responded to questions from members of the audience.

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TRANSCRIPT

TIME SPEAKER TEXT
00:00:11 Anderson, FrederickAttorney IF WE COULD RECONVENE, I'M THE MOST OPPORTUNITIES OF ALL, WANDERING -- TRUANT OF ALL, WANDERING AROUND,...
00:00:53 Unidentified Speaker SHE'S HERE.
00:00:54 Anderson, FrederickAttorney ALYSSA WILL BE SPEAKING UNDER THE HEADING OF DIRECT TO CONSUMER GENETIC COMPANIES AND AT THIS RESEARCH....
00:01:24 Levin, ElissaCounselor EVERYBODY HEAR ME OK?
00:01:25 Levin, ElissaCounselor THANK YOU FOR HAVING ME. THIS IS A BIT OF A DAUNTING TASK TO TALK ABOUT RESEARCH AND ALL OF THE DIFFERENT...
00:23:15 Anderson, FrederickAttorney THANK YOU, ELISSA AND WE WILL MOVE RIGHT OFF TO QUESTIONS AND DISCUSSION. I SEE A GROUP OF HANDS, I'M...
00:23:28 Moreno, Jonathan D.Professor SO THIS ACTUALLY GOES TO YOUR LAST POINT, ELISSA, WHICH I THOUGHT WAS IMPORTANT, IT HAS TO DO WITH...
00:25:01 Levin, ElissaCounselor I THINK IT DEFINITELY VARIES IN TERMS OF OUR EXPERIENCE NOW, WORKING WITH THE LARGE HE WERE POPULATION...
00:26:43 Moreno, Jonathan D.Professor BUT I THINK THAT'S A PROBLEM. PEOPLE WHO ARE POOR, HAVE MORE COMPLEX CONDITIONS, OR SETS OF CONDITIONS,...
00:26:57 Ganz, PatriciaVice Chair IT WAS A VERY NICE PRESENTATION. I JUST HAVE A FEW QUESTIONS. WHEN THE SPECIMENS THAT YOU'RE LENDING...
00:27:38 Ganz, PatriciaVice Chair THEY'RE ALL RESEARCH RELATED.
00:27:40 Anderson, FrederickAttorney THERE ARE TOO MANY QUESTIONS.
00:27:42 Ganz, PatriciaVice Chair AND THEN I WAS JUST WONDERING ABOUT THE FUNDING FOR THE MAYO AND SCRIPPS STUDIES, BECAUSE THESE SOUND...
00:28:30 Levin, ElissaCounselor ALL RIGHT. I MIGHT HAVE TO ASK YOU TO REMIND ME OF THEM AS I GO. VALIDATION OF HISTORY, WE ARE NOT...
00:29:28 Ganz, PatriciaVice Chair DOES IT GET INTO THE CHART LIKE A MEDICAL REPORT?
00:29:29 Levin, ElissaCounselor IT DOES NOT.
00:29:30 Ganz, PatriciaVice Chair DO YOU HAVE A BUSINESS AGREEMENT WITH THEM? I MEAN, WE'RE TALKING ABOUT PIPPA AND CONFIDENTIAL INFORMATION....
00:29:36 Levin, ElissaCounselor RIGHT. SO ALL OF THESE STUDIES, WENT THROUGH SCRIPPS RIB.
00:29:45 Ganz, PatriciaVice Chair ARE YOU CONSIDERED A --
00:29:47 Levin, ElissaCounselor WE ARE ESSENTIALLY CONSIDERED THE LAB IN THIS EQUATION. NAVIGENICS PROVIDED THE TESTING PLATFORM.
00:29:56 Ganz, PatriciaVice Chair NAVIGENICS COMPANY IS THE LAB FOR THE RESEARCH?
00:30:00 Levin, ElissaCounselor CORRECT.
00:30:02 McInerney, JosephExecutive Director THANKS FOR THAT ELISSA, VERY NICE. I WANTED TO FOLLOW UP ON JONATHAN'S QUESTION. CERTAINLY, THE PARTICIPANTS...
00:30:35 Levin, ElissaCounselor I THINK THE BEST ANSWER THAT, IT'S A BROAD RANGE IN TERMS OF AGE, I THINK THROUGH SCRIPPS, YOU'VE...
00:31:48 Korn, DavidVice Provost LET ME JUST LIMIT IT TO THIS. WHAT IS THE NAVIGENICS HEALTH COMPASS EXACTLY, WHAT DO YOU DO?
00:31:53 Levin, ElissaCounselor WHY ESSENTIALLY WHAT IT IS, WE LOOK FOR CERTAIN SNIPS, CERTAIN GENETIC VARIANCE BASED ON THE SCIENTIFIC...
00:32:00 Korn, DavidVice Provost OK. SO.
00:32:03 Levin, ElissaCounselor HIGH RISK ASSESSMENT.
00:32:04 Korn, DavidVice Provost I MIGHT BE MISTAKEN, I'M NOT AN EXPERT IF THIS FIELD, BUT MY UNDERSTANDING IS THAT NONE OF THEM IS...
00:32:55 Levin, ElissaCounselor ACTUALLY, THE WAY THAT WE DESCRIBE IT, AND I DIDN'T HAVE AN OPPORTUNITY TO DISCUSS REALLY HOW WE,...
00:34:37 Korn, DavidVice Provost OK. AND THE SECOND POINT IS, I REALLY DON'T SEE HE WHY YOU'RE NOT -- I MEAN, I JUST LITERALLY DO...
00:34:59 Levin, ElissaCounselor WE ARE.
00:35:02 Korn, DavidVice Provost YEAH. I HAVE REALIZE THAT.
00:35:06 Levin, ElissaCounselor AND CALIFORNIA CERTIFIED. ALWAYS IN CHECK.
00:35:14 Aitman, TimothyProfessor HI, I ENJOYED YOUR PRESENTATION AS WELL, BUT I HAVE A COUPLE POINTS THAT I WANTED TO ASK. ONE OF...
00:36:45 Levin, ElissaCounselor I'M START WITH THAT LAST POINT, WHICH IS, I ABSOLUTELY AGREE WITH YOU, I THINK THAT'S PART OF THE...
00:37:48 Aitman, TimothyProfessor MOST PHYSICIANS DON'T HAVE KNOWLEDGE TO GIVE ADVICE TO THEIR PARENTS THAT IS GOING TO BE REALLY HELPFUL....
00:37:53 Levin, ElissaCounselor ONE OF THE THINGS THAT WE'RE TRYING TO DO IN OUR LIMITED CAPACITY AS A SINGLE SORT OF STARTUP COMPANY...
00:38:38 Aitman, TimothyProfessor SO THE ANALYSIS IS DONE BY
00:38:39 Levin, ElissaCounselor RIGHT. WE DELIVER OUR SERVICE, BUT EVERYTHING THAT IS GOING TO BE PUBLISHED AND COMING OUT OF IT ...
00:38:56 Unidentified Speaker YOU MAY HAVE ACTUALLY ALREADY TOUCHED THIS OR IT MAY HAVE BEEN OUT OF THE SCOPE -- I'M DIRECTOR OF...
00:39:50 Levin, ElissaCounselor I THINK THE INFORMATION WE GOT PEOPLE NOT BEING AWARE OF THE GENETIC COUNSELING WAS AVAILABLE, THE...
00:40:25 Levin, ElissaCounselor IT SEEMS TO ME IF YOU REALIZED THAT THEY DIDN'T REALLY UNDERSTAND THEIR RISK OR THE RISK THAT YOU'RE...
00:42:07 Unidentified Speaker THANK YOU. I AM AN INTERNIST AND PEDIATRICIAN BY TRAINING, THOUGH CURRENTLY I'M A CHIEF RESIDENT ...
00:43:35 Levin, ElissaCounselor IT'S A GREAT QUESTION. I DO KNOW THAT I HAVE ALL THE ANSWERS TO THAT. WHAT I WILL SAY IS, AND CLEARLY...
00:44:30 Unidentified Speaker MY NAME IS SHARON MURPHY. I AM A SCHOLAR IN RESIDENCE HERE AT IOM. AND MY PAST LIFE I HAVE BEEN A...
00:46:12 Bierer, BarbaraSenior Vice President SO I HAD ONE EASY QUESTION, AND ONE SORT OF PROBABLY UNFAIR QUESTION. SO WHEN YOU SAY YOU REMOVE IT...
00:46:37 Levin, ElissaCounselor I DO. WE ESSENTIALLY SHARE THE GENETIC INFORMATION, WHICH IN AND OF ITSELF CAN BE CONSIDERED IDENTIFIABLE....
00:46:50 Bierer, BarbaraSenior Vice President SO THE 18 IDENTIFIERS ARE NOT INCLUSIVE AND GENETIC INFORMATION AND THEREFORE WHEN YOU RELEASE IT,...
00:47:01 Levin, ElissaCounselor I DON'T THINK WE DEFINE IT AS SUCH.
00:47:08 Bierer, BarbaraSenior Vice President YOU INCLUDE DHI.
00:47:09 Levin, ElissaCounselor IT DEPENDS ON THE SPECIFIC STUDY. WE ACTUALLY WERE NOT IN THE STUDIES THAT WE HAVE DONE TODAY, WE...
00:47:26 Bierer, BarbaraSenior Vice President HERE IS THE UNFAIR WHEN. SO WHEN WE SIT HERE AND TALK ABOUT DPC, GENETICS, AND WE HEARD FROM DAVID...
00:49:04 Levin, ElissaCounselor GREAT QUESTION.
00:49:05 Bierer, BarbaraSenior Vice President I'M SURE PACKWOOD GENOMICS ARE TWO OF THE BEST, BUT THAT MAKES ME WORRY.
00:49:13 Levin, ElissaCounselor I THINK THERE ARE CHALLENGES IN TERMS OF CREATING AWARENESS FOR CONSUMERS. AND WE ARE ALL CONSUMERS....
00:50:37 Bierer, BarbaraSenior Vice President DESPICABLE THAT YOU TMS SUGGESTION ON A PUBLIC WEBSITE TO SORT OF DO THE COMPARISON, RIGHT? DO YOU...
00:51:07 Levin, ElissaCounselor I'M SURE IT IS GOING ON. I KNOW THERE ARE LOTS OF INDIVIDUALS, SOME WHO ARE IN THIS ROOM WILL ACTUALLY...
00:51:37 Anderson, FrederickAttorney THANK YOU. DATAQUICK.
00:51:41 Becker, K. DavidChief Science Officer DOCTOR COLLINS DID MENTION ANALYTICAL ASSET OF THE QUESTION WAS QUITE GOOD BECAUSE IT SEEMED TO AGREE...
00:52:58 Aitman, TimothyProfessor I WOULD ACTUALLY SUPPORT WHAT DAVID HAS JUST SAID. IN THE U.K., THERE WAS A REPORTER WHO SENT HIS...
00:54:15 Anderson, FrederickAttorney WE ARE NEARING THE END OF THE DAY. IT'S BEEN A VERY PRODUCTIVE DAY, AND YOU HAVE BEEN A LOYAL AUDIENCE,...

NOTE: The transcript for this program was compiled from uncorrected Closed Captioning.

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PEOPLE GRID LIST

  • Levin, Elissa
  • Aitman, Timothy
  • Bierer, Barbara
  • Anderson, Frederick
  • Moreno, Jonathan D.
  • Ganz, Patricia
  • Korn, David
  • Becker, K. David
  • McInerney, Joseph

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