Tuesday, March 26, 2013

Who Owns Your Genome?

The sequence of your genome contains lots of information about you. It also contains lots of information about your parents, your siblings, and your children. That's why you should not make your genome sequence public without obtaining their permission.

The sequence of Henrietta Lacks' genome was just published (HeLa cells) and nobody bothered to seek permission from her survivors. Jonathan Eisen has a comment and he has also collected all the information on the internet [HeLa genome sequenced w/o obtaining permission/consent from family - some comments and background]. Be sure to read the New York Times article by Rebecca Skloot: The Immortal Life of Henrietta Lacks, the Sequel. She says,
LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.
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].


18 comments :

  1. 2 points, both of which are not original to me, having been brought up on Razib's and Michael Eisen's blogs -

    1) The issues of consent for publication of the HeLa cell genome are quite distinct from broader questions, given the fact that Henrietta Lack's cells were gathered with out her knowledge or consent. In that case it makes sense to demand consent be gathered from Lack's next of kin, and the argument can even be made that the genome should never be published. It is not clear to me from Razib's posts that he's taken a position on this matter, but I think it's logically consistent to a) think consent should have been gathered in this case but b) a person is free to publish their own genome sequence.

    2) In regards to the larger question of whether a person must gather consent from their relatives before publishing their own genome - the standard counter argument is that people feel free to disclose heritable medical conditions and personal traits that they could keep secret. That gives you information about the likelihood that a person's relatives have the same conditions or traits as well, arguably as much or more than you could learn from the genome sequence itself. So are people obligated to keep hidden all non-obvious medical conditions and personality traits without consent from their relatives?

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    1. Actually, precisely because of how special the case is, the sequencing of the HeLa genome is not a problem at all. Can you imagine how much noise would be generated if someone tried to use the variants they find in the HeLa genome to discriminate against the relatives given how widely publicized the whole story has been? It would seem to me that those people actually have a lot less to fear than others.

      Regarding your second point - I personally do not see other way into the future than full disclosure and just getting over the whole thing - given how easy it's going to be to sequence genomes in the very near future when we move to the next generation of sequencing technologies, I just see no way of keeping that information private. I see people comparing the situation to the other protections of privacy we have in place such as not taking naked pictures of other people without their permission. Well, you only get naked a few times day, but you shed DNA everywhere you go. Then, there is the whole issue of personalized medicine - if we're going to be sequencing everyone's genome as part of it, how do we keep the information private? Presumably, at the very minimum, the patient himself would like to know about his genome, but once the patient knows, how do you prevent him from telling his relatives what diseases they might have? It's going to be a nightmare, and the costs and the negatives of trying to keep information private will vastly outweigh the benefits of it staying private. Of course, it would help if there is a reform in the health care system to go with that transition, but that's a different topic...

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    2. @ Georgi,

      I suspect your opinion "just get over it" is quite rare, and confined to those who routinely use human cells. In every other domain, people are getting more and more uncomfortable regarding privacy and technology. This trend is completely incompatible with free-for-all genome publication, especially when the person and families involved are identifiable.

      Given Henrietta's family's explicit behaviour and requests on the topic of her cells, this is irresponsible.

      Ex. Text messaging privacy concerns have hit Canada's supreme court.
      http://www.cbc.ca/news/technology/story/2013/03/26/technology-text-messages-telus-supreme-court.html

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    3. It's not as rare as you think.

      It is worth thinking about the consequences of not only making genetic information easily available but also of the consequences of trying to keep it secret in a world in which it will be easier and easier to obtain it.

      We already live in a society that has grown way too complex for its own good - do you want to add yet another thick layer of complexity to it?

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    4. 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.)

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    5. I would but it's easy for me because I don't have that many siblings and none of them knows anything about genetics so they would not object.

      That's not the situation we're debating though - the question is should the HeLa genome have been sequenced given that there was no consent. Well, at the time the cell line was established, people did not even know the structure of DNA. Sequencing genomes did not even exist as a concept. There is no way it could have been consented for whole genome sequencing. So I simply don't understand where the whole "It wasn't consented, keep the data private" thing comes from.

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    6. P.S. Following that logic, people should not be doing paleogenomics either because those samples surely weren't consented

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    7. Georgi Marinov says,

      I would but it's easy for me because I don't have that many siblings and none of them knows anything about genetics so they would not object.

      Well, that didn't take long. It took you only 15 minutes to avoid answering the question and quibble about the assumptions in the thought experiment. Have you thought about becoming a creationist? :-)

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    8. You asked for yes/no answer. I gave you that plus some explanation that was admittedly not general (and my answer is "yes" in the general case too) but that secondary in your question - the primary thing was the yes/no answer and I provided that.

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    9. Sorry, didn't see the discussion had continued -
      In answer to the thought experiment - yes. Generalized worries about genome "privacy" are silly, for the reasons I gave above: people talk about heritable diseases and non-obvious traits all the time with none of these concerns, but this behavior will often give more information away than the genome sequence itself right now.

      Caveats - specific, well-founded worries about insurance status due to crappy laws would give me pause for pragmatic purposes, as I suppose would weird issues about unknown paternity etc. But I consider these special cases, in the same sense that I might avoid speaking publicly about my political views if a relative was up for some sensitive political appointment and their chances would be hurt by having a crazy relative.

      I'd also be interested in the reverse question Markk asks - where is the line drawn and why - how many and how distant relatives must give their consent, given that the privacy violation should drop as a power of 2 with relatedness. Maybe we could treat it like Haldane would: "I won't publish my genome over the objections of 2 brothers or 8 cousins."

      (Personal caveats to the original question - I don't plan on having my genome sequenced any time soon and don't have any specific reasons to post it in public if I did. Furthermore, harmonious family life requires occasionally agreeing to do things you think are silly/pointless, so if the objections were strong enough, and my interest in posting the sequence minor enough, I might not do it just to keep the peace.)

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    10. The purpose of thought experiments (in ethics) is to try and establish some basic guidelines. In this case, we're trying to understand situations where there are conflicting values of privacy. If the person whose genome has been sequenced would make it public no matter how many relatives object then that helps establish a guideline for discussion.

      I think Georgi falls into that category. It suggests that ethical arguments about "greater good" are not going to resonate with him. It suggests that his personal view of what's ethically proper will often trump that of others.

      It becomes more complicated when some relatives object but not others. I would never publish my genome sequence if ANY of my close relatives objected. I see no reason to infringe on their privacy for no gain to myself. For me it's a no-brainer. Not publishing my genome does me no harm so there's really no ethical dilemma at all.

      I have trouble imagining what defense Georgi is going to mount for violating the privacy of his parents, siblings, and children in the thought experiment. I really don't understand why anyone would make that choice in the thought experiment.

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  2. Sexual preference is believed to be a genetically correlated trait and is commonly regarded as highly sensitive information. Should a person obtain permission from their relatives before disclosing their sexual preference? (There are certainly many cases where such permission would be refused, with negative consequences for the person in question.)

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    1. Can I tell someone the color of my pubic hair without asking my family's permission?

      If the day care lady sees my son's penis, does she now know something about my penis?

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    2. If she was a Lamarckian she might think that she did.

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  3. Seems like there was a lot of public pressure on this. It appears they are withdrawing the data.

    http://news.sciencemag.org/scienceinsider/2013/03/privacy-flap-forces-withdrawal-o.html

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  4. I'll answer your contrived and ridiculous scenario - YES I would publish in a heartbeat.

    Now I'll extend your ridiculous scenario with my ridiculous one. Suppose everybody in your family wanted you to post genetic info but your second cousin who you have never met didn't. Would you post? Where is the line? I say at yourself.

    Get used to having genetic information published. I have never seen anyone scolded for revealing they have Cystic Fibrosis or such. There is no moral issue with an individual coming out and saying they have some other rare disorder that discloses tons of genetic information.

    The Hela stuff isn't relevant AT ALL because on the one hand you are talking about an individual decision and on the other hand you are talking about an administrative decision about somebody else. Not the same at all to me.

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    1. Please explain to me what you would gain by making your genome sequence public over the objections of your parents, siblings, and children (see the thought experiment). What is the ethical rationale for violating their sense of privacy in that situation?

      Get used to having genetic information published. I have never seen anyone scolded for revealing they have Cystic Fibrosis or such. There is no moral issue with an individual coming out and saying they have some other rare disorder that discloses tons of genetic information.

      I don't think you've thought this through. Imagine that your genome sequence reveals that you have a high probability of getting early onset Alzheimer's but that isn't discovered until after you make it public. Your parents are 50 years old and they don't want to know about such genetic time bombs. They certainly don't want all their friends to know. Why would you violate their wishes? What's in it for you?

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    2. I certainly wouldn't like insurance companies or my future employer to have access to my genetic info and have them decline insurance and healthcare based on that and not offer me a job because I may develop some kind of disorder in the future that may not make me as productive as they would like.

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