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Health

Decency not by law alone

Gene ExpressionBy Razib KhanOctober 2, 2011 9:58 AM

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Rasmus Nielsenhas a long response below to the issue of the getting some sort of consent from Aboriginals in the local region in regards to a specimen from a deceased individual. He has a full entry on this at the new weblog of his research group. As an aside, let me say that it is heartening to see such an eminent young scientist put up an initial post where he forthrightly states that "We will use this space to spread our opinions about the state of affairs in evolutionary genomics. If you disagree with us – leave a comment." This makes me less skeptical of the medium term future which Joe Pickrell outlined last summer in relation to peer review. More specifically in this case it would be interesting to see what exchanges, disagreements, and agreements, the authors of the Science Aboriginal genomics paper had with the authors of the broader Denisovan admixture paper in The American Journal of Human Genetics. My friends at IB surely know if there was any such exchange, but it feels kind of lame asking people for possible personal communication constantly. Going back to Nielsen's post he contends that it would be the "nice thing" for him to do to consult his sibling if he was going to disclose genetic information which might have broader impact upon him (in this case, the potential presence of a gene predisposing someone to Alzheimer's). I think that's key: I don't have much of an issue with scientists who follow their conscience, and try to be decent human beings. Scientists are people too; not just analytic computation machines. The problem is when a legal framework emerges which regulates what science is, and isn't, done. Obviously at the boundary I totally agree with the idea that science has some ethical constraints. We wouldn't want a thousand Mengele's to bloom. But I think the legal threshold should be set rather high. If governmental bodies begin to regulate the bounds of scientific inquiry at a fine-grained level that's a pretty strong incentive for aspiring Leon Kass' to take over such agencies.

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