The Immortal Consenting of Henrietta Lacks

Rebecca Skloot has an essay in today’s New York Times discussing the recent publication of the genome sequence of a widely used human cell line. Skloot, as most of you already know, wrote a book about the history this cell line  – known as HeLa for Henrietta Lacks, the woman from whom they were obtained.

In her book, Skloot describes how the cells were taken from Lacks, who was dying of agressive ovarian cancer, without her knowledge or consent, and how the family was kept in the dark about the cells for decades, even as they researchers showed up to take samples from Lacks’ descendants. Skloot has done a wonderful job of not only gaining the Lacks family’s support for her book, but of engaging them with the legacy of Henrietta’s unwitting contribution to science and medicine.

So it makes sense that Skloot would take umbrage with the release of the complete sequence of HeLa cells, published without the consent of knowledge of the Lacks family. I can understand how this happened – HeLa cells are so ubiquitous in the lab, it’s easy to forget that they come from a real person (although it’s hard to believe the authors of the paper hadn’t read, or at least heard of, Skloot’s book). But it’s really not acceptable, something the authors now realize and are trying to correct.

Unfortunately, Skloot’s NYT essay on this topic was muddled – conflating two distinct issues – one very general, the other specific to HeLa cells – that have to be dealt with separately.

The first issue is one of consent from Henrietta Lacks to sequence and publish the genome of cells derived from her body. As Skloot made very clear in her book, no such consent was obtained. And, since Lacks died a long time ago, it can not be obtained. Lots of people, including Skloot, point out that consent was neither required nor generally obtained in the 1950’s when Lacks was sick. And knowing that Lacks was a poor African-American woman, it’s hard not to see more sinister overtones her treatment.

To me, there really is no moral question here. We should not be using HeLa cells because no consent was obtained to take them. And I am very uncomfortable with the general idea that heirs/descendants should be allowed to retroactively consent for a dead relative. Nothing that can happen now or in the future can make up for the lack of real consent. But whether they should be used or not, these cells are being used all over the planet. Given that this is unlikely to change, there’s really no choice but to de facto give the Lacks family a kind of proxy consenting power to act on Henrietta’s behalf.

However 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. Skloot repeatedly raises the issue of all the things we can learn about an individual and their relatives by sequencing their DNA, and whether family members should have some kind of veto power over the publishing of a relatives genome.

But this is a very different than the question of how to obtain consent from an individual who is not longer alive. To see why, lets stipulate that Henrietta Lacks had consented to all these studies – had, in sound mind, given permission for the doctors to take her cell lines, establish cultures, send them around the world to be used for any purpose and to freely publish the results of any studies on these cells. Would you still require the authors of the paper to consent Lacks’ family?

Skloot clearly thinks the answer is yes – positing that publishing any individual’s genome sequence is intrinsically   an invasion of the privacy of their relatives – whether or not the sequenced individual consented to the process. Hence this quote:

“That is private family information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It shouldn’t have been published without our consent.”

This has nothing nothing to do with the history of Henrietta Lacks and HeLa cells. It is an active assertion about familial privacy rights that would – if you accept it – be just as true if the paper in question had described the sequencing of anyone else’s genome. Why weren’t the same issues raised when the genome belonged not to Henrietta Lacks, but to Jim Watson or Craig Venter?

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. But either way, by juxtaposing the entirely justifiable empowering of the Lacks family to grant individual consent on Henrietta’s behalf with the desire of the same family to protect its genetic privacy, Skloot is implying that these are one and the same – that we should give ANY family the right to veto the publication of a relative’s genome.

But this is a logical fallacy. We probably all agree that the Lacks family should have been consulted about the publication of the HeLa genome because Henrietta herself never gave such permission. And some of you (not me) may think that a family’s right to genetic privacy trumps the right of an individual to publish their genome. But the former does not, in any way, imply the latter, and I think Skloot did the conversation around these issues a huge diservice by conflating them in such a prominent way.

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