Henrietta Lacks, Publishing Genomes, and Family Vetos

Rebecca Skloot, author of the very interesting and well-written bestseller The Immortal Life of Henrietta Lacks — a book about the poor and badly treated black woman whose cells became the famous (and very heavily used) HeLa cells, medicine and the treatment of African-Americans, and who owns products derived from one’s genes — had an interesting op-ed in the New York Times on March 23, with the clever title The Immortal Life of Henrietta Lacks, the Sequel. As Skloot writes:

“On its own, the HeLa genome doesn’t say anything specific about Lacks: it’s a string of billions of letters that detail the genetic information that makes up a HeLa cell, which is useful for science. A news release from the European Molecular Biology Laboratory, where the HeLa genome was sequenced, said, “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.”

But that’s not true. And a few scientists decided to prove it. One uploaded HeLa’s genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family. (The scientist kept that report confidential, sharing it only with me.) Until recently, few people had the ability to process raw genome data like this. Now anyone who can send an e-mail can do it. No one knows what we may someday learn about Lacks’s great-grandchildren from her genome, but we know this: the view we have today of genomes is like a world map, but Google Street View is coming very soon. . . .

After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.

The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent.”

Skloot then quotes a number of scientists and bioethicists decrying the practice. I actually think things are not quite as Skloot sees them. Let me explain why:

First, and this relates more to her general take in the source book, I think her claims about who owns products derived from our genes is somewhat under-theorized. In particular, I think there are some hard and interesting questions about who “deserves” whatever benefits emanate from our genes. None of us “earned” our genes, there is no mixing of labor involved here, nor do I think personality theories of intellectual property do the work needed here, and I have delved into these issues to some extent in this paper. I don’t mean to be definitive and say she is wrong on this, but more that the matter is not as simple as she seems to assume.

Second, I think Skloot somewhat conflates the question of personal veto over the publication of one’s genome with family veto. Even if we thought Lacks, if alive, should have a right to veto the publication of her own genome because we think she had an ownership or privacy interest in doing so, that does not imply her family ought to have the same veto. If the idea (unstated by Skloot and I suspect undertheorized) is that the family is exercising her right that they “inherited,” there are some problems/questions:that assumes that this is the kind of right that passes to family after death, which it may not (many personal rights do not), and/or that the reasons why we permit the veto in the first place (for example harm to the genome source) while alive survive after the genome source’s death, which relate to the question of posthumous interests that I have blogged about before. If instead it is not an inherited right but a right of the family on their own, that would seem to depend on some (unstated) argument that the family has a rights claim over the information in Lacks’ own genome. Now that argument might proceed on the claim that they share some of that genome, but that raises the question why — on this view — they should not be able to veto the decision of a living and consenting family member who wants to donate? Now maybe there is a difference between family veto when individual is silent or absent versus when individual consents, but things can get complicated here. What if my father and mother object, but the brother consents, for example? I don’t mean to definitively resolve the matter, but just to raise several complications with Skloot’s very well-written and intelligent Op-Ed.

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