With its HeLa genome agreement, the NIH embraces a expansive definition of familial consent in genetics

I wrote before about the controversy involving the release earlier this year of a genome sequence of the HeLa cell line, which was taken without consent from Henrietta Lacks as she lay dying of ovarian cancer in 1950s Baltimore.

Now, the NIH has announced an agreement with Lacks’ descendants to obtain their consent for access to and use of the HeLa genome (the agreement applies only to NIH funded research, but the hope is that others will agree to it as well).

I think the NIH handled this reasonably well. There’s no way to go back and consent Henrietta Lacks, so one could reasonably argue that nobody should be allowed to use HeLa cells ever or generate and use information derived from their genome. But that seems like too harsh a judgment, especially given the pride the family takes in the use of Henrietta’s cells for research.

So I think it’s entirely reasonable, in this case, to give the family the right to consent for use of these cells, and to impose whatever restrictions on the use they see fit.

However, there are some issues raised by this case and this decision that warrant further discussion.

First, exactly when, and under what conditions, should someone’s heirs be able to consent on their behalf? It sounds like there was broad consensus from the Lacks family about how to handle this. But what if there hadn’t been? Does the consent right pass down strictly to one’s legal heirs? And maybe more relevant to existing use of clinical samples, many consent documents allow people donating samples to withdraw their consent in the future. Does that right also pass down to one’s heirs?

Second, and to me more importantly, is the issue I raised previously with respect to Rebecca Skloot’s op-ed on the topic. In both her piece, and in the editorial by Francis Collins and Kathy Hudson, there is mention of the need not just to make up for the lack of original consent, but to protect the genetic privacy of the Lacks family. The notion is that, because they are so publicly associated with HeLa cells, anything that is discovered about these cells will immediately be associated with members of the family. And with the decision announced today, the NIH is explicitly giving the Lacks family the right to veto uses of HeLa cells, not because Henrietta would not have consented to the use in 1951, but because they view it as an invasion of their privacy today.

This is indeed an issue, but it is a very different one than original consent. And unlike the original consent issue – which can be argued as applying narrowly to the HeLa case – the privacy issue applies to all genomic data, whether properly consented or not. Collins and Hudson talk about “de-identified” samples in their essay, ignoring the now abundant evidence that one can almost trivially deduce the donor of a clinical sample from a small amount of DNA sequence and the use of public databases of genetic information.

Thus, in the near future, any human genetic data out there will be subject to the same risk that the Lacks family now faces. We can’t set up a panel of family members for each of the tens of thousands of samples that will soon be out there. And even if we could, I don’t think we should.┬áThere is no sensible or even workable way to require familial consent for the use of someone’s genetic material.

We believe in the absolute right of individuals to make decisions about how samples obtained from them can be used. But the very nature of inheritance and genetics means that every decision they make by necessity affects other individuals – close relatives most acutely, but by no means exclusively. Figuring out how we deal with this is one of the major practical and philosophical challenges of the age of genetic information, and even though Collins and Hudson chose to punt this issue down the road in the name of comity with the Lacks family, it is an issue we are going to grapple with very soon.

And I am disturbed that the Director of the NIH has, in effect, embraced an extreme position on this issue – that families have the right to veto uses of someone else’s DNA.

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