Privacy Issues in Biomedical and Clinical Research (1998) / Chapter Skim
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Can We—and Should We—Ensure Genetic Privacy?
Can We—and Should We—Ensure Genetic Privacy?
Pages 7-10
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From page 7... ...
"There is no feasible operational way that you can carve genetic information out of the medical record for purposes of rational legislative or regulatory oversight," said David Kern of the American Association of Medical Colleges. "You just cannot do it.
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From page 8... ...
Thus the results of the genetic test would need to be an integral part of the medical record. "The more information the better if you are trying to treat an individual patient," Penhoet said, "but it seems to me that we are spending a lot of time creating barriers to the truly valuable aspects of this which will come in the near term when we are able to describe each person in much greater detail and therefore customize treatment to individual people in a way that makes treatment much more effective for a variety of different diseases." Regulations that wall off a certain amount of information in the name of genetic privacy would "compromise our ability to address the truly more important issue, which is how you use all this information to develop medical treatments which are much more specific, much more targeted, and therefore much more effective." More generally, Kern said, the urge to create a right to genetic privacy betrays a lack of understanding of how the American system of health care and biomedical research operates.
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From page 9... ...
It just won't work, and I think the problem is that the people trying to do these things don't understand how the system works." Creating a right to genetic privacy will come at a price, Kern concluded, and that price will be to hamper the nation's system of medical care and research. "The issue then is where you draw the line between a low impedance free flow of information and a very high threshold barrier to inappropriate leakage, and that point has not been well defined in the public discourse." Up to now, he said, the debate has generally been presented as a choice between two extreme positions.
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From page 10... ...
10 PRIVACYISSUESINBIOMEDICALAND CLINICAL RESEARCH "Either you don't want any barriers, which I don't think is politically viable, or you want barriers thrown in all over the place, which will bring the whole system to a halt." Ultimately, he said, finding the best solution will depend upon understanding the system and the various tradeoffs involved, debating those tradeoffs, and finding a balance between the desire for genetic privacy and the desire for continued improvement in the nation' s health care system.
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