Magazine article Science News

Burdens of Knowledge

Magazine article Science News

Burdens of Knowledge

Article excerpt

The gold rush of human genetics is well under way. Now that tools for profiling genome activity are widely available, scientists have found more than 80 disease-related variations in human DNA, many of them in the past year.

As a result, ethical arguments about how to handle people's genetic information--and related disease-risk information--are no longer academic. Much of the discussion this year among human-genetics researchers has revolved around the sticky issues posed by the windfall of new knowledge. For example, how can scientists keep genetic data from research studies truly anonymous when DNA is, by its nature, the ultimate fingerprint?

Furthermore, studies looking for genetic variations involved in a disease often include thousands of people as research subjects. Scientists use microchiplike wafers to test each person for hundreds of thousands of DNA variants simultaneously, usually under agreements of confidentially and nondisclosure.

What, then, should researchers do if they stumble across genetic variations in a study participant that put the person at increased risk for a life-threatening disease unrelated to the condition being studied? If the disease is treatable, saying nothing could be unethical, but telling the subject about the risk would require breaking the anonymity of the data and violating the study's nondisclosure agreement.

"If the original agreement was that you wouldn't tell them, then you shouldn't tell them," said Francis S. Collins, director of the National Human Genoine Research Institute in Bethesda, Md. …

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