A Question About the HeLa Genome and Privacy

Since I’m putatively on vacation, this will be a quick hit, and I’ll admit up front I haven’t been following all of the back and forth. It seems to me the controversy about the release of the HeLa genome without the consent of the Lacks family seems to conflate two things:

1) Basic decency. First, why are we still using a cell line derived from a patient without her consent (and that’s putting it mildly)? If we are going to use that cell line, basic decency, given how scientists and society have treated the Lacks family, should have governed the decision to publish the genome. What is legal and what is decent are unfortunately not always the same thing. So don’t be an asshole.

2) Privacy and Ownership. Leaving aside the observation that we’ve already done a lot of sequencing of the HeLa genome–enough to easily and quickly determine that it was derived from an African-American woman–the privacy and ownership issues are unclear to me. Why would the family get a veto over the genome sequence? I don’t see, besides the moral claims listed above, how they would have more claim than I would if one of my parents sequenced his or her genome. That could potentially reveal lots of private information about me (cuz heredity) or my parents’ relatives. Should I or my relatives be able to ‘deconsent’ the data? Would that only apply if the sequenced relative were dead?

#2 is a serious issue and one that I think too many in the genomics biz are willing to gloss over–thanks to heredity, you’re never sequencing just the target genome. But legitimate considerations of decency and historical abuse aside, why would the family get a veto?

Discuss.

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3 Responses to A Question About the HeLa Genome and Privacy

  1. Imagine that you had paid for the complete sequence of your genome and you wanted to post it on a public site. Imagine that your parents, your siblings, and your children objected on the grounds that the information would reveal things about them that they did not want made public.

    What’s the decent thing to do: (a) post the sequence anyway, or (b) not make your sequence public?

  2. R. Geeta says:

    Mike (hi!): #2: Not sure why the individual needs to be identified under most circumstances. I suppose that the case of the HeLa genome is of specific (scientific) interest, but here I think #1 ought to have trumped everything else. It is unconscionable insult upon injury, methinks.

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