Is publishing your genotype unethical?

By Razib Khan | October 12, 2011 9:49 am

Larry Moran thinks that I had to ask my parents and siblings for permission before publishing my genotype. Interestingly, most of his readers seems to disagree with Larry on this, so I won’t offer my own response in any detail. They’re handling it well enough. I would like to add though that obviously this isn’t a either/or proposition. If my family had a history of a particular genetic disease which was well characterized in terms of causative alleles I might not have published my genotype. As it is, we don’t. So I didn’t see much of a downside. I would also add that in my case It wasn’t possible to have genuine consent in the first place. My mother isn’t much into science, and we don’t share a common first language. There’s really no way that I could have gotten substantive consent, insofar as my mother understood what I was doing.

More broadly though I think it is useful to broach this question and think about it. People do have social responsibilities by and large, and we’re embedded in a broader fabric. This isn’t true in all cases, some people have such horrible relationships with their families (e.g., victims of abuse) that it’s obviously ridiculous to wonder if they should ask their family for consent.

CATEGORIZED UNDER: Culture
MORE ABOUT: Personal genomics
  • Polynices

    Speaking as a westerner, I’d say that we’re not part of a tribal society and that individual autonomy and our relative lack of duty to relatives is more than sufficient to make asking permission not only unnecessary but ludicrous.

  • http://sandwalk.blogspot.com Larry Moran

    Actually the readers on my blog and on RichardDawkins.net are NOT handling the question very well at all. Most of them are only concerned about THEIR rights. The rights of others seem to be of no consequence to them. You can see a similar attitude in the first comment on this blog. It’s not an attitude that I would be proud of.

    Let me pose a hypothetical question. Suppose you had done the right thing (according to me) and discussed this with your siblings and parents. Suppose they had all said they were uncomfortable with having part of their genetic information made public by your actions.

    What would you have done? Would you have made your genome information public in spite of their wishes? If so, why? What is it about publicizing your genome sequence that trumps the wishes of your family?

    BTW, do you think that because your family members may not be knowledgeable about the issues means that you are under no obligation to explain the possible consequences to them?

  • pconroy

    @1,

    I agree, my parents are not me, I have a virtually unique DNA composition, so they don’t have a “patent” on my DNA, even if they can be cited as “prior art”. ;)

    If I suffered a terrible autosomaly dominant genetic disorder, only inherited on the X Chromosome, so that it could be inferred which side of my family that it was inherited from, so what. That still wouldn’t mean that an aunt or uncle or their children automatically suffered from this disorder, or even were carriers for it.

  • pconroy

    @2,

    Larry, what do you think the possible consequences would be to relatives?

    My take is little or nothing.

    Same as that questionnaire that went around about DTC Genetics, and if you had found out that you had an elevated likelihood for some condition or other, if you took steps to deal with it, or consulted a doctor. I found that I had elevated likelihood of a bunch of conditions, but what did I do about it – NOTHING. It’s interesting to know that I have a higher than average rate of being bald, or getting prostate cancer, but I’m not fretting about it, or changing my lifestyle as a result.

  • Stephen G

    The need for consent for publication of one’s genome is a nice ethical thought experiment, and little more. What happens as genome sequencing becomes more common in our society? Is it unethical for my cousin to publish an eighth of my genome? Is it unethical for me to publish my genome, with my families full consent, and then go on to have children after the fact? I mean, really, a chunk of their genome is out there from the moment of conception on. God help them if both their parents published their genomes!

    If this kind of ethical thought experiment actually ever became standard ethics in the field it would truly slow down progress genomics by an immeasurable degree.

  • Stan Tsirulnikov

    Maybe this was covered in other comments, but what responsibility do we owe to people outside of our family to disclose our genotype? Maybe a company has a perfectly valid reason for not wanting to hire someone with a higher than average chance of some disease or disorder. Family members are not the only people that could be affected by disclosure or non-disclosure and minimizing the harm to the former may end up maximizing the harm to the latter (and vice-versa of course).

  • Onur

    I would publish my whole genome without asking anyone for permission even if I had an identical twin or a clone. My genome is mine alone and no one else (including my identical twins and clones) has any right on it.

  • Ray

    My genome, my permission. My sister’s genome, her permission. Simple.

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    . Suppose they had all said they were uncomfortable with having part of their genetic information made public by your actions.

    depends on their reason. their final opinion is less relevant than their logic (e.g., i know someone who wouldn’t want people knowing their genotype results because their family would be angry about divulging african ancestry; this isn’t a reason to respect privacy IMO).

    do you think that because your family members may not be knowledgeable about the issues means that you are under no obligation to explain the possible consequences to them?

    i didn’t say my mother lacks knowledge. the rest of my family lacks knowledge on this issue too, but i could get or not get informed reasoned consent. i’m saying that it’s pretty much impractical to get consent from my mother in the sense she has no background AND we don’t share a common vocabulary since english isn’t her first language and it is my first language.

    fyi, my family found out after the fact and no one cared. but the key is that my mom still has no idea or interest in what i did. her lack of response isn’t a function of her genuine lack of moral outrage, but more a function that the whole thing is opaque to her.

  • prasad

    So similarly, if I got a heart attack, or got diagnosed with high cholesterol levels/BP, I would be an “asshole” to talk about it, because this would change peoples’ priors about the disease susceptibilities of my children? Ditto my income or SAT score or political views, religion…

    In fact doesn’t Moran’s argument generically work better with phenotypic traits in general (given that we all intuitively understand family level correlations) than with genes where only a few experts keep track of still very hazy details?

  • Little bit

    As someone who published their 23andme v2 results publicly, I’ll weigh in on the subject: Should I have consulted with my family? Perhaps, I was remiss in not doing so. Truthfully, they would have either not understood the implications or cared one way or another. I don’t think my results are pertinent to my family members without phasing, and any suspected anomalies can be errors in processing or de novo.

    So why did I do it? There was an undercurrent of paranoia at 23andme about sharing, and a push by the FDA to ban DTC tests – I was vocal in my opposition to both. I felt that disclosing my results publicly was important to show I was genuine in my stances. I am also the mother of an autistic child, and felt that having my results out there (just maybe) could help someone with a suspicion, but not the data set to observe. Yes, it may be a pipe-dream, but you never know.

  • Charles Nydorf

    You raise profound questions when you bring up the difficulties of discussing whether to publish your genotype with your mother. One of these is the lack of a common first language. I wish you would elaborate on this a little more. Why can’t you talk about genomic concepts in your mother’s first language? Is it that you don’t know the language well enough or does that language lack genomic terminology?

  • S.J. Esposito

    #2, Let’s flip your argument on its head.

    Suppose you want to make your genome known to the public and you take precautions not to upset anyone in your family; so, you ask them. Suppose that one (or more) of them objects but due to a slightly sinister reason — perhaps they have something to hide or are being spiteful, etc.. Does this not rob you of your right to publish the results? And worse, for reasons that may be unscrupulous? It’s fair enough to say that someone who desires to publish their genome desires so for a reason. And again, if a family member objects to this for any kind of morally ambiguous reason, isn’t he or she maliciously robbing you of an opportunity to do something that you’d like to do?

    The ownership of the data is not one that’s going to be resolved, because it’s inherently, albeit unwilling, a shared object.

  • http://sandwalk.blogspot.com Larry Moran

    @S.J.Esposto,

    If one of my family members objected to publication for unscrupulous reasons I’d ignore her and publish anyway.

    Why is everyone having such a hard time with this concept of respecting the sincere wishes of your siblings and parents? Why is this so bad?

  • pconroy

    @14,

    Larry I suspect the answer to why people are, “having a hard time with this concept of respecting the sincere wishes of your siblings and parents”, is that the majority of testees are of a scientific persuasion, and value the potential science discoveries they may help influence, over the emotional feelings of a parent/sibling. That and it’s their data, they own it.

  • pconroy

    BTW, my mother visited recently from Ireland and I asked her about releasing her data to the public, and she just said, “Whatever you think, you know best”.

    She does speak English, but has little or no interest in genetics or even science – so it amounts to being meaningless for her. I tried explaining some stuff to her, and either due to lack of interest or education, she could barely understand even the basics. When I showed her her list of relatives on 23andMe, she asked how I knew they were relatives, and supposed that they had shared documents with me, when I again told her it was via her DNA from her spit, she just looked perplexed…

  • http://opensnp.org Bastian

    I asked my parents about how they would feel about me publishing my 23andMe results prior to doing so. They both are no biologists or scientists in any way. So what I did: I tried to explain the potential implications to them in lay terms. Luckily they had no objections against the whole thing, so I was free to go. But what if they’ve had a problem with making my (and with this at least a part of their genetic information) avail? I really don’t know. Would I have published the results any way? Maybe, but maybe not attached with phenotypic information under my real name.

    I think this are 2 discussions going on: The first is about the legal ownership of the data and if one only looks at this side I’d agree with everyone who says “I’ve the right to publish this kind of information”, in the end those is “my” genetic information and I should be free to do with this information whatever I like to.

    The second is more about the moral side of doing so against the will of parents/siblings/children. I think this a question that everyone has to answer for him/herself. Is it worth publishing the data even if my next of kin don’t want me to?

  • djw

    Every time another human sees me they know the deep dark secret that both of my parents carry genes for red hair. Should I hide in a cave to protect the privacy of their genetic information?

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    I wish you would elaborate on this a little more. Why can’t you talk about genomic concepts in your mother’s first language? Is it that you don’t know the language well enough or does that language lack genomic terminology?

    i speak bengali at the level of a 5 year old. so no, i don’t know the language well at all. and my mother has no science background in any case, so the double-whammy of no science knowledge and lack of common language makes it kind of impossible. she knows words, like genetics, but has no real grasp of concepts.

    larry, i think part of the problem is that you presented the ethical maxim in a broad and unqualified way. but implicitly you don’t necessarily think that EVERYONE needs to broach their family. lots of people hate/don’t have a relationship with their family. for people who are close to their family (full disclosure, i am not) this isn’t going to be an issue, they would talk to this as a matter of course. in any case, i think that another problem is that it privileges genotypic information a bit much for many. there are lots of data which effects your family if you divulge it (e.g., your health history), but people don’t react as strongly to that.

  • S.J. Esposito

    @Larry Moran, I have a problem “respecting the sincere wishes of my parents and sibling” when it infringes upon my right to make a contribution to science. Period, end of story. I would have the same objection if the issue were different. For example, some families would object to their progeny donating their bodies to science after death, be it for religious reason or what have you, and I would make the same argument.

    I just cannot see myself wanting to make a contribution to science and being deterred by familial objection. It’s not about respecting their wishes, its about respecting my own.

  • Spike Gomes

    One wonders if most of these individualists would quietly stand by the same principle of “it’s mine, if you don’t like it, deal with it” if after spending the time and money investment of taking care of their elderly parents; said parent expressed a wish to leave most of their wealth to Benny Hinn or Sylvia Browne or fill-in-the-pseudoscientific/religionist-person-of-choice-here.

  • http://math-frolic.blogspot.com Shecky R

    Our current state of genomic knowledge and understanding is still primitive (and likely quite inaccurate as well), but that won’t always be the case. People publishing their genome today really are clueless as to the ultimate negative consequences it may have on their working/social lives (or those of their loved ones) 10 or 20 years from now; they’re thinking myopically only of today. And just because you may have scruples doesn’t mean businesses, corporations, or even other individuals do.

  • wijjy

    Our current state of genomic knowledge and understanding is still primitive (and likely quite inaccurate as well), but that won’t always be the case. People publishing their genome today really are clueless as to the ultimate negative consequences it may have on their working/social lives (or those of their loved ones) 10 or 20 years from now

    Even given the dubious proposition about how our understanding will increase – I fully expect this knowledge to remain 10-20 years out of reach for my lifetime – there is no part of my published genome that any corporation can say is shared with my sibling (except mtDNA, and X and Y if we are both male). They can say that half of my genome is shared with my father, and half with my mother (and they can say, if I am male, that my mother shares my X and father my Y), but not which half comes from which. Since you have essentially randomised this information, I am a bit confused about what anyone is giving away.

  • Charles Nydorf

    Thanks for the explanation. My friends and I have been working on basic science terminologies for a small language (Yiddish) in which original scientific research is rarely published. The purpose is mainly to enable conversations of the kind that come up if people want to discuss such questions as “Should I publish my genome?”

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    People publishing their genome today really are clueless as to the ultimate negative consequences it may have on their working/social lives (or those of their loved ones) 10 or 20 years from now; they’re thinking myopically only of today.

    hey, thanks for your evaluation of me as ‘clueless’ and ‘myopic,’ instead of just coming to a different informed decision. i guess that explains why you read my blog!

  • http://www.rishon-rishon.com David Boxenhorn

    I’m not saying there are no ethical issues, there are. But the ethical issues of publishing an autobiography are much greater, in terms of the private information that is frequently revealed about other people. Do you think people publishing their autobiography should get the permission of all the other people who appear in it? Maybe. Sometimes. Should they be required to? Definitely not!

  • ackbark

    I would like to ask, is it ethical to publish your baby’s genome?

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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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