News FocusHuman Genome 10th Anniversary

What Would You Do?

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Science  11 Feb 2011:
Vol. 331, Issue 6018, pp. 662-665
DOI: 10.1126/science.331.6018.662

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With genetic studies multiplying and sequencing costs plunging, more than a million people worldwide are, sometimes unknowingly, sharing their DNA with hundreds or even thousands of researchers. And it's slowly dawning on many scientists and ethicists that even if the DNA was offered to study diabetes or heart disease or some other specific condition, it may surrender many other secrets. Whether to divulge these results, and how, is arguably the most pressing issue in genetics today. The Ethical, Legal and Social Implications Research Program at the U.S. National Human Genome Research Institute is now accepting applications for more than $7.5 million in studies on how to share genetic results with research participants. In December, 28 researchers convened by the U.S. National Heart, Lung and Blood Institute published a set of "ethical and practical" guidelines for returning such results. Hospitals struggling with the issue are running focus groups and mailing surveys to patients and families, querying them on what they might want to learn, however unexpected, about their or their child's DNA.

This News Focus article and the one on the genomic data explosion are part of a collection this month reflecting on the 10th anniversary of the publication of the human genome, which is gathered here.

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