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. There 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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  1. Jim Woodgett
    Posted August 7, 2013 at 12:42 pm | Permalink

    You hit on a number of my own discomforts regarding this deal. The interview in Nature between Francis Collins and Ewan Callaway in Nature ( http://www.nature.com/news/nih-director-explains-hela-agreement-1.13521 ) also leaves a lot to be desired, especially his answer to the question: What was your response to the publication of the HeLa genome? Collins answers this from a purely scientific point of view – leaving the ethical issue and sensitivity aside (which I think Ewan was getting at, given the following question). There is an air of this deal being a somewhat forced compromise to make amends and allow this high profile data release. It is also clumsy in trying to re-write history on the eve of personal genomics. Conflicts abound. Presumably, the motivation is that now all samples are properly consented. While this may be the case, do people really understand what information can be logically parsed from their genomic sequences? It’s hard to avoid precedents, but this episode smacks of colliding rather than cooperative desires and the result may echo for many years.

    • Posted August 14, 2013 at 2:52 pm | Permalink

      …do people really understand what information can be logically parsed from their genomic sequences?

      This is going to be tough no matter what. At the moment consent is forever; there’s no time frame when I hand over a sample of my cells. But people can find out so much more about someone now from their genome than was thought possible a few years ago. If that continues to be the case it could raise some ethical problems, and there might be a few people who say, “When I gave consent I didn’t know that they’d be able to figure out that from my DNA!”

      All the more reason we need to be having clear-headed discussions now about genomes, personal information, and ownership.

  2. Ben Kirkup
    Posted August 7, 2013 at 2:25 pm | Permalink

    Not to be too trite about it, but we all have the ability to do things which impact our descendants; and they have no say in the matter, not the least for not yet existing. If we choose to pursue a course of action leading to heritable diseases, if we choose to give away or spend our savings, if we choose to have more or fewer children, and if we choose to publicly release our DNA sequence – descendants do not, as a rule, have any say in the matter. Hopefully, we have that in mind, ourselves.

    However, Lacks did not consent. She did not willingly release her DNA under the assumption, for example, that it might lead to cures for the diseases of her descendants – as sensible as that idea might be. As a result, in this particular case, it makes sense that the family consent corporately; not that other families could somehow overrule the consent of their elders.

    • Posted August 7, 2013 at 3:20 pm | Permalink

      I said quite clearly that I supported engaging the Lack family in the consent of HeLa cells. I think it’s the least that could have been done.

      However, I still maintain that Francis Collins has been conflating the issue of how to consent the use of HeLa cells, which I think was handled well, with the right of the family to protect its privacy, which is an important – and far more general – issue. The principle established here – that families have a right to protect their own genetic privacy by regulating the use of another family members genetic information – is unwise and unworkable, and warrants far more discussion than it got here.

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