Is the publication of the HeLa genome an invasion of the privacy of Lacks’ living relatives?


Mike Eisen has joined the discussion about the HeLa genome:

Skloot’s piece glides from the issue of how to retroactively get Henrietta’s permission to experiment with and publish about her cells to the seemingly related  issue of whether publication of the HeLa cell genome is an invasion of the privacy of Lacks’ living relatives. (…)

I find the way Skloot’s NYT piece moves back and forth between the historical transgressions against Henrietta Lacks and the contemporary threat to her relatives’ privacy incredibly misleading.

I doubt this was intentional – rather I think it reflects muddled thinking on her part about these issues. *

I think this is a very good point.

And when discussing how much threat the HeLa genome is to the privacy of her living (and future) relatives, it would actually be important to know if Skloot is right that a few minutes of analysis of the HeLa genome provide “a report full of personal information about Henrietta Lacks, and her family.”

I still doubt it.

But it’s a testable hypothesis. We just need to sequence other members of the Lacks family and see if their genomes are significantly closer to the HeLa genome than yours or mine or Skloot’s.

Now there’s an experiment waiting to be done.

I’ll start talking to the folks at the EMBL.



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