Henrietta Lacks’ genome, and familial consent

By Razib Khan | March 24, 2013 3:07 am

Rebecca Skloot has an op-ed in The New York Times, The Immortal Life of Henrietta Lacks, the Sequel. I’ve read it a few times now and I’ll be honest and say I’m not totally clear on some of the points she’s trying to make, so I didn’t have a strong reaction to it. This is in contrast to Michael Eisen, who has a post up, The Immortal Consenting of Henrietta Lacks. He told me on Twitter that he had some exchanges with Skloot (on Twitter) which informed his response, so he probably has more context than I do. Eisen says:

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.

I don’t know if Skloot is actually implying this.* If so, then I disagree with her on this, as I’ve stated in the past. But I do want to emphasize I feel that the op-ed overemphasizes the power of genes. For example: “Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you. That report would list the good news (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism.” It’s a op-ed in The New York Times, so I don’t hold this against the author.

But much of the controversy about this stuff would be diffused if people were more straightforward about the comparative advantage of genetic information over any other sort of information. If, for example, you tell people that you have a health condition which is known to run in families (e.g., breast cancer), then you’re also telling people about your family. To my knowledge there isn’t a tacit social contract that you need to check with your family before you ever discuss you health status, though I could be out of the loop on this.

* Skloot disputes Eisen’s characterization of what she meant to imply. See her response in Eisen’s comments.

CATEGORIZED UNDER: Personal Genomics
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  • klmr

    What the discussion so far ignored is the fact that legislation differs drastically across countries. Genetic tests are forbidden in Germany or require consent from all family members precisely *because* of the inferences that can be drawn. So what Rebecca Skloot demands in her article is already reality, and when she quotes Collins as saying that “policy is lagging years and maybe decades behind the science” he’s taking a US-centric stance.

    (However, for the purpose of the HeLa publication this is not legally relevant since the EMBL is multinational and not part of Germany.)

  • https://delicious.com/robertford Robert Ford

    weird how (seemingly liberal) people will downplay the power of genes in most other instances but emphasize them in ones like these. and by “weird” i mean dumb.

  • RebeccaSkloot

    I am definitely not implying what Eisen thinks I’m implying. The thing he seems to be missing is that this is a story very specific to the Lacks family. You can not ignore their history when you ask whether scientists should have gotten their consent for sequencing and publishing the HeLa genome. My point is that their story, as it has many times in the past, is raising important ethical issues that many people (scientist, ethicists, policy makers, the public) agree we need to address, but haven’t yet. I do not try to answer those questions: I’m a journalist, it’s not my job to try to dictate the specifics of policy decision. My job is to raise the issues and essentially say, Discuss. This is what I did with The Immortal Life, and it’s what I did with this OpEd.

    As for your comments above, I’m not emphasizing “the power of genes” at all. This is just a fact: When you get reports from companies like 23andMe, they say those things you quote above (x% more likely to get Alzheimer’s, etc). I’m not saying those reports are as predictive as many people think they are (I actually think they’re not, and I haven’t done one myself because I think they don’t they’re useful). The point is that many people (including the Lacks family) don’t want private information like that public, especially since we don’t entirely know what that information means yet, or what we may learn from it in the future.

    You say, “To my knowledge there isn’t a tacit social contract that you need to check with your family before you ever discuss you health status.” I have no argument with that, it’s just not related to this story. This story isn’t about whether *family members* can disclose their family’s genetic information without consent. It’s about whether *scientists* can.

    The big issue here isn’t whether genes are as predictive as many people think they are, or whether family members should have veto power over other family members releasing genetic information. As I say nearly every time I speak, and in the OpEd you link to: It’s about consent and public trust. Over the last three years since my book has come out, I’ve talked with thousands and thousands of people about this. The message from the public is clear: People want to be asked permission before scientists do things like using their cells in research, or sequencing and publishing their genomes. In this case, the Lacks family’s genetic information was published without the consent of even a single family member. If Henrietta had consented to the use of her cells in research, the discussion would be different — given that her cells are not anonymous, and that she died long before genetic sequencing was even conceivable, people might be discussing whether her children should be *re-consented* for that new research (which is a question being asked by many scientists and policy makers about other cases right now). But that’s not what happened.

    Most people, in the end, will give their consent and let scientists do whatever research they want and need to do. People just want to be asked. They don’t want to find out after the fact that scientists are doing things like this without people’s knowledge. When that happens, it damages public trust, which is something no scientists wants.

    • razibkhan

      When you get reports from companies like 23andMe, they say those things you quote above (x% more likely to get Alzheimer’s, etc). I’m not saying those reports are as predictive as many people think they are

      the examples you used are peoples’ perceptions of what personal genomics offers, it isn’t the reality. it isn’t a fair and accurate representation of the sort of results which 23andMe provides most people. i know, because i see many 23andMe risk assessments. i would have preferred that instead of reinforcing public confusions in this area you’d toned down that sentence, but your op-ed was no less problematic than what i regularly see in the media so i don’t think it’s that big of a deal. a non-trivial minority of people will get novel information which a large effect/impact. most people do not. this is clear once you use the service.

      as for the rest, i am inclined to take your word that michael misunderstood you. i kind of wondered if you implied what he thought you did too, though i came to a different conclusion (i didn’t get that sense).

      • RebeccaSkloot

        I totally hear you on that. My point with that graph was that this is what the public sees when they look at these reports: They see probability percentages and disease names. This is what the Lacks family saw when they got this report (which they did not ask for) on Henrietta. There’s an entirely different article to be written about the public may or may not understand what those percentages mean (and the fact that science doesn’t even really know at this point), and I definitely hope someone writes it.

        • razibkhan

          let me unpack what my issue is specifically:

          (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism.

          1) the “you’ll probably live to be 100″ isn’t based on any real prediction by any real company. no one would see this. this is way outside the normal range of what would be offered even by the most unethical of personal genomics firms.

          2) a small % of people will get the prediction they’ll develop alzheimer’s, because a small % do have a large effect gene. so that’s defensible, though there needs to be qualification that 99% of people won’t get anything like this.

          3) i am very skeptical that anyone would genetically predict you’d get biopolar disorder. is there even a SNP that’s so penetrant??? this is especially true for endophenotypes.

          4) the “maybe alcoholism” is totally accurate, and reflects what these services provide.

          but this sort of framing is typical in a lot of media treatments of personal genomics. sometimes the firms collude with this, even if they might object to specific inferences. obviously i push back against it when possible.

    • JonFrum

      No, Eisen hit the nail on the head, and your answer was obtuse at best. This: ” My job is to raise the issues and essentially say, Discuss” is just bizarre. Eisen asked a simple question. When journalists write books on contentious subjects, clinical objectivity is not required, and very rarely – if ever – produced. Books covering controversial subjects that are entirely absent of point of view are just not going to sell. And I can’t imagine the author of a book on slavery refusing to answer a question about the moral basis of the institution with that cavalier
      ” My job is to raise the issues and essentially say, Discuss”

      • razibkhan

        your point is defensible. but sometimes it isn’t too interesting/informative/productive for the author’s perspective to strongly stamp the narrative (usually you can glean it). though i suppose that is more true for academic works.

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Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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