Linda Avey at the HUGO Symposium on Genomics and Ethics, Law and Society
Many thanks to Linda Avey, co-founder and former co-president of 23andMe, for speaking at HUGO GELS 2009. The founder and president of Brainstorm Research Foundation also Twittered live from the event and contributed some valuable highlights. Last week, Linda started a new blog—The Life and Times of Lilly Mendel—in which her inaugural post talked about her experience at HUGO GELS 2009.
…back to Geneva. The usual arrows were flying at the HUGO conference…a few, very vocal scientists seem to be quite threatened by this notion of democratizing DNA. They characterize it as "trivializing", which simply doesn’t make sense. I just don’t agree that providing people with their genetic data, which would be virtually impossible for them to derive on their own, demeans or trivializes it. Rather, I think the research community has taken the notion of "human subject protection" way too far, to the point of unchecked paternalism (for more on this, check out Anne’s post here, http://j.mp/RHIrX). And I do think the lay public is capable of understanding that what is currently known about their DNA is mostly a work-in-progress.
She also mentions HUGO again in a discussion of the need for a database that makes it possible to cross-reference genetic associations and disease risk.
…the job of curating, evaluating and scoring genetic associations would be taken on by representatives of the scientific community.
Who would take on this fairly gargantuan role? During my visit to the HUGO GELS meeting last week, I threw out the suggestion that HUGO could be one possibility. They’re an international body–which, in my humble opinion, is important–and they seem to be looking for a new raison d’etre. The problem, as always, comes down primarily to funding. Where would the monies come from to host such a service? And who would take the leadership role within the organization?
Thanks again, Linda, for giving us so much to think about! As always, Linda has incredible ideas and her blog is definitely one to follow.
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[...] 23andMe co-founder and President of the nascent Brainstorm Research Foundation Linda Avey is blogging: The usual arrows were flying at the HUGO conference…a few, very vocal scientists seem to be quite threatened by this notion of democratizing DNA. They characterize it as “trivializing”, which simply doesn’t make sense. I just don’t agree that providing people with their genetic data, which would be virtually impossible for them to derive on their own, demeans or trivializes it. Rather, I think the research community has taken the notion of “human subject protection” way too far, to the point of unchecked paternalism (for more on this, check out Anne’s post here, http://j.mp/RHIrX). And I do think the lay public is capable of understanding that what is currently known about their DNA is mostly a work-in-progress. (via Genomeweb and HUGO) [...]