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On genetic privacy

Explore the ethical concerns surrounding the HeLa genome disclosure and personal genomics ethics in genetic research.

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Larry Moran has a post up, Who Owns Your Genome?, where he mentions me apropos of the HeLa genome disclosure:

In my opinion, there is no excuse for publishing this genome sequence without consent. Razib Khan disagrees. He thinks that he can publish his genome sequence without obtaining consent from anyone else and I assume he feels the same way about the sequence of the HeLa genome [Henrietta Lacks’ genome, and familial consent].

In response to Larry, I don't have a definitive opinion about the HeLa genome disclosure in terms of whether it was ethical to release it or not. "Both sides" have positions which I see the validity of. I think ultimately the root issues really date to the 1950s, not today, and they don't have to do with personal genomics as such. Also, I'd recommend Joe Pickrell's post, Henrietta Lacks’s genome sequence has been publicly available for years. ...

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