On genetic privacy

By Razib Khan | March 29, 2013 8:35 pm

Larry Moran has a post up, Who Owns Your Genome?, where he mentions me apropos of the HeLa genome disclosure:

In my opinion, there is no excuse for publishing this genome sequence without consent.

Razib Khan disagrees. He thinks that he can publish his genome sequence without obtaining consent from anyone else and I assume he feels the same way about the sequence of the HeLa genome [Henrietta Lacks’ genome, and familial consent].

In response to Larry, I don’t have a definitive opinion about the HeLa genome disclosure in terms of whether it was ethical to release it or not. “Both sides” have positions which I see the validity of. I think ultimately the root issues really date to the 1950s, not today, and they don’t have to do with personal genomics as such. Also, I’d recommend Joe Pickrell’s post, Henrietta Lacks’s genome sequence has been publicly available for years.

Larry also has a question in the comments:

Let’s try a thought experiment. Everyone is free to answer. I’d prefer a simple “yes” or “no” followed by an explanation.

Imagine that you have paid to have your entire genome sequenced. You announce that you intend to upload it to a public site so that anyone can see it. Your parents, your siblings, and your children, all object, saying that this would violate their privacy.

Do you upload it anyway? (“Yes” or “no.” Please respect the rules of a thought experiment and don’t try to quibble about the scenario.)

Yes, I’d upload it, and I will (since I’ve committed to uploading it when I have it done). Also note that my daughter is too young right now to give consent, and she probably will be too young when I upload the genome, so I’m going to do something which might impact her as a child.

One nuance I would like to add though is that decisions may vary given circumstance. For example, if you have one of the high penetrance BRCA mutations, you may not want to expose your family’s information for pragmatic reasons. But my question would be: why do people talk about their highly heritable illnesses in public forums already? I’ve seen media profiles of women with a BRCA mutation, with female relatives. By talking about this they’re exposing their family’s genetic information implicitly. Therefore, I suspect many of the pragmatic concerns are moot, because though there is privacy in regards to health information, there isn’t a taboo about discussing one’s health status in public. Most of the time people who have these diseases want their story put out there to aid in medical advancement and consciousness raising (though obviously there are exceptions).

And that is a subset of the primary issue I have with many worries about privacy and policy and the genome. Just transpose the structure of worries into other fields, and you wonder where the analogous concern is elsewhere. For example, in regards to health I’d argue diet is a much larger issue than genomics, at least for non-aged morbidity. But there is a huge industry of diet books, and very few people see licensed nutritionists. The point here isn’t to argue for paternalism or anti-paternalism, it’s to suggest that genetics isn’t special. It is important, it is cool, and it is fascinating. But so are many other things.

CATEGORIZED UNDER: Health
MORE ABOUT: HeLa, Personal genomics
  • svman

    If a woman announces that she has breast cancer, then she is implicating her relatives about as much as if she says she has a bad BRCA variant. So does she have to keep quiet about her medical condition? These ethical concerns make no sense to me.

    • JonFrum

      Your point only holds if all breast cancer is inherited. A bad BRCA variant IS inherited. There’s something in what you say, but it’s a step removed from DNA sequence, and it’s not a small step.

      • svman

        No, it applies if breast cancer is merely heritable, as it is. A huge number of human characteristics, from height to schizophrenia, are heritiable even tho they are not easily predicted from DNA. Knowing the health of relatives is more informative that the DNA of relatives, with today’s technology.

  • razibkhan

    who doesn’t seem to care whether his actions violate the privacy values of his relatives.

    what’s the point in even articulating a position when you forcefully restate your understanding of other’s positions like that? you have a long history of doing that larry in various contexts, which means that i don’t there’s much upside in trying to outline why/what i believe when your mind seems settled on what i believe (in fact, we’ve gone over the position before).

  • http://twitter.com/joe_pickrell Joe Pickrell

    The hypothetical situation is kind of funny. “Should you be respectful of your family’s feelings?” isn’t really a big “ethical” question–some people are respectful, some people aren’t, and for most people it depends on the situation.

    Let’s amend the hypothetical situation: say the reason all your family doesn’t want you to upload your genome is because you might find out you (and thus they) have some African ancestry, and that would make them uncomfortable. Is the “correct” behavior still so obvious?

  • http://hollymaysay.blogspot.ca/ hollymaysay

    If someone wants to study your genome they should be able to without you giving consent. A person could have a particular disease or combinations of diseases they want to study to further their research.
    However, you should be kept anonymous to protect privacy.

  • http://www.sciencepantheism.com Andrew Planet

    Why not ask any other species if we should feel sorry for sequencing their genomes? Needless shame is a perversion.

  • Steve

    With the new health care law, insurance companies won’t be able to deny you based on an existing condition. Eventually insurance companies will request this information for their customers. We are moving in this direction regardless… Besides with diseases like cancer, it’s rarely black and white and there are numerous environmental and epigenetic factors that play a role in the development of cancer…

    In some ways it’s like the resistance with personal credit ratings. At that time, people were concerned about privacy however with the right checks in place abuse is minimized…

  • http://www.sciencepantheism.com Andrew Planet

    Why not ask any other species if we should feel sorry for sequencing their genomes? Needless shame is a perversion.

  • svman

    So explain your position on your blog. Suppose half of the Lacks relatives want the genome published, and half do not? What if research depends on that genome, and without that research, people will die?

  • Dmitry Pruss

    Hawks argues that rules of disclosure for familial conditions (such as breast cancer) are already de facto loosened. There is a clear and understood contradiction between having to treat a condition as familial, and personal medical privacy, and people dig it.

    When genetic disclosure enters the uncharted terrain is not with the things like BRCA1/BRCA2, but with the incidentalome findings (mutations which are not yet manifested in personal or family health history, and which are only discovered incidentally), with the family secrets kept hidden (such as nonpaternity, incest, or stigmatized racial ancestry), as well as with forensic uses of disclosed DNA.

  • razibkhan

    if they didn’t give me any reason aside from privacy in a generic sense, yeah.

  • razibkhan

    1) none of us are “wild type”. we just don’t know it :0)

    2) see follow up post

  • razibkhan

    larry, my close family members, who are muslim, are very distressed by the fact that i use my real name, am an avowed atheist, and have posted sketches of muhammad being sodomized by a camel on the internet. i even have relatives who are muslim fundamentalists who were shocked when they googled me. would you think it would be judicious for me to keep my atheism, which is offensive to them, private, so that it isn’t open knowledge that they’re related to such an individual? (this has real life consequences in that i stain my lineage group, one of whose calling cards in the marriage market is its long history of religious scholars and sufi saint).

  • razibkhan

    be more clear in your comments or i won’t publish them in the future. i don’t know what you’re trying to say.

  • razibkhan

    But we have to draw the line somewhere and that’s where I would draw it.

    people have different lines. i don’t disagree with that. that’s my point. (in particular, it’s contextual)

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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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