Genetic Testing and Privacy

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. In the third of four parts, participants focused on public understanding and use of genetic information. Among the issues they addressed were the availability of DNA and genome .. 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. In the third of four parts, participants focused on public understanding and use of genetic information. Among the issues they addressed were the availability of DNA and genome testing, privacy concerns for private persons and public figures, implementation of the Genetic Information Nondiscrimination Act, and ethical guidelines for use of genetic information. They responded to questions from the audience.

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TRANSCRIPT

TIME SPEAKER TEXT
00:00:15 Bierer, BarbaraSenior Vice President THE DIRECTOR CONSUMER GENETICS TESTING CONTINUES. SOME OF THE ISSUES IN THE NEXT TWO PANELS ARE PRIVACY...
00:01:12 Baruch, SusannahDirector THANK YOU. AND THANK YOU VERY MUCH FOR INVITING ME TO TALK TODAY. I'VE WORKED WITH MANY OF YOU FOR...
00:22:15 Bierer, BarbaraSenior Vice President DAVID, THEN JONATHAN.
00:22:22 Korn, DavidVice Provost SUSANNAH, YOU MADE A COMMENT ABOUT HAVING -- I HAVE TWO POINTS. IF SOMEBODY IS GOING TO POTAGE GENETIC...
00:23:01 Baruch, SusannahDirector I'M GOING TO ANSWER YOUR QUESTION FROM TWO CORRECTIONS. CERTAINLY, I THINK THERE'S SORT OF A EVOLVING...
00:24:21 Korn, DavidVice Provost WELL, I WOULD JUST SAY THAT I THINK PEOPLE HAVE TO HAVE SOME RESPONSIBILITY FOR HOW THEY BEHAVE. ...
00:24:45 Bierer, BarbaraSenior Vice President JUST TO ARGUE THE POINT, IF THE INTERVIEWEE OFFERS THE INFORMATION, THE EMPLOYER NOT ASKING IT, MAY...
00:25:14 Baruch, SusannahDirector WELL, I THINK IT DEPENDS ON YOUR VIEW OF HOW PEOPLE DO AND SHOULD USE THE INTERNET IN THEIR PRIVATE...
00:26:54 Korn, DavidVice Provost I KNOW PARENTS WHO TRACK THEIR KIDS FACEBOOK IS THE ONLY WAY THEY CAN FIGURE OUT WHAT THEY KIDS ARE...
00:27:02 Baruch, SusannahDirector WE'VE ALWAYS HAD DIFFERENT RULES FOR EMPLOYERS THAN FOR PARENTS.
00:27:08 Korn, DavidVice Provost THE OTHER POINT IS YOUR MENTION OF THE LACK OF HIPAA EXTENSION I THINK GOES BACK TO A POINT I WAS...
00:27:58 Becker, K. DavidChief Science Officer THANK YOU VERY MUCH. I WAS LISTENING. SO I APPRECIATE YOUR TALK. IT WAS GREAT. I JUST DIDN'T WANT...
00:29:19 Baruch, SusannahDirector CAN I ASK A QUESTION. I'M CURIOUS TO KNOW THE EXTENT TO WHICH YOU WOULD BE, I THINK SOME OF THESE...
00:29:52 Becker, K. DavidChief Science Officer WELL, MICHAEL COX IS OUR PLAN. HE BASICALLY STANDS TOE TO TOE WITH US EVERY DAY AND WE HAVE A PLAN...
00:30:14 Moreno, Jonathan D.Professor BACK TO YOUR SLIDE ON THE INSURANCE SITUATION ON THE 16 STATES WHO WAS LOOKING TO PLUCK HOLES AND...
00:30:56 Baruch, SusannahDirector I THINK IT'S A VERY DIFFICULT POLICY ISSUE. AND I THINK IT'S ONE WORTHY OF SOME CLOSE EXAMINATION....
00:32:09 Anderson, FrederickAttorney THIS QUESTION, I REMEMBER VIVIDLY, A NUMBER OF OTHERS 13 YEARS AGO IDENTIFYING THE PROBLEM OF THE...
00:33:53 Moreno, Jonathan D.Professor LIFE INSURANCE IS INDIVIDUALLY WRITTEN AND UNDERWRITTEN. AND THAT MODEL YOU WOULDN'T HAVE A BIG POOL...
00:34:06 Unidentified Speaker THAT WAS EXACTLY MY QUESTION BROUGHT ABOUT BY HAVING HEARD SOMEONE SPEAK WHO WAS DOING THE REVEAL...
00:36:23 Baruch, SusannahDirector I CERTAINLY AGREE WITH YOUR FIRST POINT, I AGREE WITH BOTH OF YOUR POINTS. THE APOE QUESTION AND THE...
00:37:48 Bierer, BarbaraSenior Vice President THANK YOU SO MUCH FOR A WONDERFUL DISCUSSION. WE'RE GOING TO TURN TO SCOTT WOODWARD NOW ON GENETIC...
00:38:00 Woodward, ScottDirector THANK YOU. IT'S A PLEASURE TO BE HERE. I THINK WE MAY BE -- I THINK I MAY BE A SLATELY DIFFERENT ...
01:10:11 Bierer, BarbaraSenior Vice President WE HAVE A FEW MINUTES FOR QUESTIONS.
01:10:15 Woodward, ScottDirector I ALSO JUST WANTED -- THESE ARE ANOTHER IMPORTANT THING WITH THESE DATA SETS AND THE DATA SET WE HAVE...
01:10:51 Bierer, BarbaraSenior Vice President THE 100 YEAR RULE, DOES THAT APPLY, IF AN INDIVIDUAL HAS DIED, OR DO YOU LIMIT THE 100 YEARS?
01:10:59 Woodward, ScottDirector WE KEEP IT AT 100 YEARS, WHERE THE PERSON IS ALIVE OR HAS DIED. IN THE UNITED STATES, THE LAW SITS...
01:11:44 Bierer, BarbaraSenior Vice President IT WAS A WONDERFUL PRESENTATION, THANK YOU, SCOTT, WE'LL SEE EVERYONE BACK AT 3:20 P.M. FOR OUR LAST...

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

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PEOPLE GRID LIST

  • Woodward, Scott
  • Baruch, Susannah
  • Bierer, Barbara
  • Korn, David
  • Anderson, Frederick
  • Becker, K. David
  • Moreno, Jonathan D.

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