A big win for consent, privacy, and genome data




Excellent documentary by Adam Curtis about Henrietta lacks and her HeLa cell history.
The Way of all Flesh.


Good for the family... bad for the plot of Orphan Black and I was really liking that show.


Single mom discovers immortal life with one weird trick!


See why genome researchers hate her!


Agreements like this are useful in putting the brakes on the inexorable dissemination of information until we've all had a chance to adjust. I don't think there's any long-term solution except to accept that this sort of privacy is ultimately doomed.

I understand some (certainly not all) of the concerns about cell genome data being made public and I don't discount them at all but aren't we all leaving cells laying around wherever we go? Is it reasonable to hope your genome won't ever be sequenced and made public as the technology becomes more advanced?


The idea that an arbitrary choice of descendants of a person should have some sort of odd intellectual property rights to that person's genome is certainly unusual. It's particularly unusual that acknowledgements and "expressions of gratitude" should have to be made to the Lacks family. It's distinctly unclear to me how the family, unlike Henrietta Lacks herself, has contributed anything but hindrances to research.

The end result of this, hopefully, is that we'll stop using HeLa entirely, and find a reasonable alternative from a consenting donor. As Collins noted, this is an unusual case and shouldn't be a precedent for other cell lines.

This does bring up interesting issues, though. The primary problems mentioned in things discussing this, beyond IP, is that the sequence can reveal information about disease propensities and other such genetic matters. These problems for her relatives would exist regardless of Henrietta Lacks' consent. For example, the same information can be had regarding any relatives of Venter. Should the consent of relatives be required for someone to publish a sequence of their own genome? That would seem utterly ridiculous.


I think you're missing the point on this particular case. Their mother's cells were taken and used without her permission, their own medical data was collected and used without their knowledge that it was being used for research purposes or permission to be used as such, the genome of their mother's cells (which allows you to infer things about their genomes) were published without any input or even a "hey we're doing this".

When you say -- "It's distinctly unclear to me how the family, unlike Henrietta Lacks herself, has contributed anything but hindrances to research" -- I think you're being wildly dismissive of a legit grievance on the part of her survivors and severely underplaying the consent and privacy violations that happened to her, simply because she is too dead to complain about them herself.


For those needing some background on the case, nature.com covered her story (longform) in June- http://www.nature.com/news/medical-research-cell-division-1.13273


I was discussing a particular requirement of the new regulations there. The violations happened to Henrietta Lacks. The cell line was derived from her cells, and her cells are the cells that have facilitated the research. If this is being done to redress these grievances, it would be appropriate to acknowledge her in an Acknowledgements section, not her family. Simply because she is dead does not mean that her descendants should get credit instead of her individually. Acknowledging her family makes this seem more like an IP issue, which it is not.

Suggesting that the descendants have grievances because of their genetic similarity becomes complicated; again, as I noted, do you also think that any relatives of Venter should have some right to restrict access to his genome, directly contradicting his own wishes? And how far should this restriction go? If an individual would prefer that their genomic data be publicly available, should relatives have a say?

However, that was reading from Reuters, which, as is ubiquitous in scientific matters, has done a terrible job representing the agreement. The actual controlled access policy has a very reasonable acknowledgement requirement, in my view, that is also very different from what Reuters was describing.

It's worth noting, though, that this is disturbing from an open-access perspective. The agreement does not appear to be in line with Nature's data availability policies, and seems a bit dubious with regards to G3's. While it seems clear that neither Nature nor G3 will be retracting the papers involved, reviewers should definitely consider this for future papers, especially if they are not given access themselves.

It's also worth noting that it's a bit unclear that this actually satisfies the descendants anyway. The Hudson & Collins article in Nature seems to suggest that of the three options given to them (public access, controlled access, or no access), the NIH was never willing (nor able, for that matter) to implement the third option. And realistically, it is only a matter of time before someone publishes the full genome data; there are no laws I am aware of preventing anyone from doing so themselves.


As I brought up before, the family behind the K12 strain of E. coli probably has equally the case as Henrietta's if it could be identified. But because nobody is sure who it was, there isn't a similar silly battle. Thankfully nobody knows. The lesson is don't name strains like "HeLa" - name them like Q57 so money-grabbing descendants have no clue.


There's a problem with your comparison of Craig Venter's relatives and those of Henrietta Lacks. Venter chose to release his genome, predispositions and all (the first version included some alleles from a few other individuals, so there could have been some doubt about any specific locus). The relatives of Henrietta Lacks could face discrimination due to susceptibility inferred from her genome (GINA has lots of holes), without ANYONE having given consent.


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