Tuesday, October 11, 2011

Who Owns the Information in Your Genome?

 
More and more people are having their genome sequenced or having it scanned for the presence of various traits. Should the information that comes out of those studies be made public without your permission?

The answer is, no. I think we can all agree on that. Nobody should have access to your personal genetic information without your permission.

Is your permission sufficient or do other people have a say in whether your genome information makes it into the public realm? Let's say you want to publish your own genomic sequence, do you have the right to do this on your own without seeking approval from anyone else?

Razib Khan of Gene Expression is passionately interested in this question. A few weeks ago he published an article about the sequencing of the genome of an Australian aboriginal using cells from a hair follicle deposited in a museum in the 19th century. Scientists sought permission from a local tribal council before publishing the genome sequence [All your genes belong to the tribal council!].

Clearly this is a case where scientists felt that ethnically-related individuals should have have a say in whether the genome of a long-dead member of the tribe was published.

Razib focuses the issue by asking whether an identical twin has the right to publish their genome over the objections of the other twin. Do you have the right to publish your genome sequence over the objections of your non-identical siblings and your parents? Razib says yes.
For that matter, people who put their genotypes in the public domain are partially exposing their whole families. Do they have to go ask for permission? Obviously I don’t think so. I didn’t ask my siblings or my parents.
This is one of those cases where "rights" and the "law" might conflict with social responsibility. I think Razib is dead wrong. I think he had to ask his sibling and his parents for permission and, if they refused, he should not have published his genome sequence. That's the ethical way to behave.

A few days later, Rasmus Nielsen posted a response to Razib Khan on his (Nielson's) blog: Evolutionary Genomics Blog. Nielson defended the decision to get permission from the tribal council and he also criticized Razib for not consulting his siblings before publicizing his genome information. Here's what Rasmus Nielson said .... [Do the genes belong to the tribal council?]
I cannot help but worry about the issues regarding disclosure of genetic information. As long as the public has faith in the geneticists ability to predict phenotypes, the implications of disclosing genetic information are enormous. When my brother in a few years are being considered for a position as CEO for a major company, I am sure he wouldn’t appreciate if I disclose that I carry a mutation that disposes me to early onset of Alzheimer’s disease. He might after all then also carry the mutation with 50% chance. Even if we wouldn’t want to ban me from disclosing information about myself, the nice thing for me to do would nonetheless be to talk with my brother before making the disclosure.
Again, it's the "nice thing to do," that should determine your behavior and not whether you have the legal "right" to do something. Nielson attributes the difference between him and Razib to an American preference for individualism.

Razib Khan responded to the criticism [Decency not by law alone].
Going back to Nielsen’s post he contends that it would be the “nice thing” for him to do to consult his sibling if he was going to disclose genetic information which might have broader impact upon him (in this case, the potential presence of a gene predisposing someone to Alzheimer’s). I think that’s key: I don’t have much of an issue with scientists who follow their conscience, and try to be decent human beings. Scientists are people too; not just analytic computation machines. The problem is when a legal framework emerges which regulates what science is, and isn’t, done. Obviously at the boundary I totally agree with the idea that science has some ethical constraints. We wouldn’t want a thousand Mengele’s to bloom. But I think the legal threshold should be set rather high. If governmental bodies begin to regulate the bounds of scientific inquiry at a fine-grained level that’s a pretty strong incentive for aspiring Leon Kass’ to take over such agencies.
I'm not sure what to make of that response. Rasmus Nielson was not proposing a law that says you can't publish your genome information without the permission of your family members. He was merely saying, as am I, that Razib behaved badly by not consulting his family. I don't have much respect for people who behave like that even if the law allows it.

What do the rest of you think? Are you the only one who has a stake in the information in your own genome? Should you be allowed to make it public even if your siblings and/or parents refuse permission?

There's a long list of prescriptions and warnings for those who want to participate in the Personal Genomes Project run by George Church. Here's what it says about consulting your family ...
Your publicly available DNA sequence data, trait data and other information will include certain information that applies to your family members. Some people may draw conclusions from your publicly available information, including speculating about what such information might reveal about you and your family members. As a result, the PGP cannot predict all of the risks, or the severity of the risks, that the public availability of this information may pose to you and your relatives. You are strongly encouraged to discuss this study and its potential risks, including the fact that not all of the risks are known, with your immediate family members.
Is this strong enough or should participants actually have to obtain written permission from their immediate family members? (They do have to get written permission from an identical twin.)


Image Credit: The Spittoon.

28 comments :

  1. Does this mean that if someone wants to make it publically known that they have a genetic disease, that they can't do that without their parent's permission? What about other members of their lineage that are dead, who's genes the modern person now carries?

    Nielson argues for doing 'the nice thing to do', which may have some worth, but surely that doesn't tell us what is legal.

    "Rasmus Nielson was not proposing a law that says you can't publish your genome information without the permission of your family members"
    But that's kinda BS don't you think? Nielson asked the 'tribal council' so as to avoid a lawsuit, there's a lot of controversy in museum specimens and collections of tribal artifacts and especially human tribal remains. Obviously we don't know what Nielson was really thinking, but getting tribal permission equally obviously gives his organization legal protections. Is he also simultaneously waiving any legal protection that the tribal-permission would give? Will he not use the fact that the tribe gave permission in defense if he, or his organization, was sued?

    As far as written permission, that clearly moves out of 'polite' and into 'legal'. As a legalism, its not even up to an individual if their /own/ genome, or even their own cells, are made public. So supposed 'relatives' seem to have no standing (and wouldn't they have to demonstrate that they are genetically related in the first place).

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  2. I think Razib has it exactly right. The decision to publish your own genetic profile does not strike me as fundamentally different from any other decision someone might make about what to say or write. Self-censoring because some unknown person may misuse your data to discriminate against some OTHER unknown person does not appear to be a noble course of action.

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  3. This is seems like those cases where someone publishes a memoir that puts family members in a bad light, maybe ruins a political career. If you believe the public deserves to know about your being diagnosed with depression, why not stock holders?

    Doesn't the decision really depend on how close you were and want to continue to be to your relatives? It doesn't seem like a blanket "ought" can cover such a situation.

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  4. So, any rule as to what members of the family have to be consulted in order to disclose your own genotype while behaving ethically? First cousins - yes or now? Some of them actually can have as much in common with me as my siblings! And if there is no limit, should I ask your permission, too? Because I am sure that we are very distantly related.

    This is just silly. Next you will be saying that it is wise to consult family before publishing one's photo on an Internet. After all, hey, that picture will inevitably have a lot in common with how family members look.

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  5. I think a blanket statement that says it is ethically and morally wrong to publish your genome data without the permission of immediate family members is a bit strong. At best it is a moral/ethical grey area that isn't much different from disclosing other personal information of the non-genomic variety that may impact family members.

    As it stands right now, disclosure of those other sorts of info will probably have more impact than disclosing genomic data, after all the pool of people who are both a)interested, b)capable of finding said info and c)able of interpreting it is fairly small, at least currently.

    I would agree that "the nice thing to do" is to discuss these matters with your immediate family in order to make a more informed decision in regards to data release. But I don't think you are morally obligated to have all of their permission.

    What I hope these sorts of discussions will spark is just how, in a legal framework, we will address issues like genetic discrimination, insurance issues, etc.

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  6. But still, I don't understand the point of people who publish publicly their Genome?!

    I understand the desire of getting your personal genome (like I do have) but I don't understand this desire of publishing it openly.

    Does it really "help scientists" ? Don't they (the scientists) have already many whole genomes available ? Is it for showing off ?!

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  7. I am absolutely and positively against your view and I think it is almost totalitarian to force someone to ask people he may not even like or may hate whether his most personal information may be published. It would be absolutely immoral for people to be stopped from publishing their genomes because family members or even worse some tribal religious counsel said so.

    You may think I not responding or over responding to what you said, but I don't think so. I think you don't realize you are espousing letting unrelated people hold sway over personal decisions. I do not believe that any person or persons has the right to the privacy of the part of the genome that he may share with another. Too bad, that is not private information.

    It is highly disingenuous to say "Neilson was not proposing a law" when that is exactly what he is doing - a moral law that would likely become a national law at some point either through legislation or lawsuits. In my book that is morally on the slippery slope.

    I do think this is quite an interesting issue for a split. Even the thought of requiring this gives me a bad feeling, so this is a gut issue for some people for sure.

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  8. @ Pascal, there are many people publishing their genomes publicly so inevitably their reasons will be varied.

    However, there are three major sets of benefits to having people publish their genomes that I can think of.

    1. Not all scientists work in academia or other well-funded institutions, and so this open-source data can be very valuable to them and enable discoveries that would otherwise not be made or be much slower in coming. Also, not all institutional scientists like to share. There is a strong incentive to keep your data to yourself, so if you are at Stanford and have collected a large library of genomes that might be great for other folks at Stanford but not so great for scientists working at the Wellcome Trust Sanger Institute. A culture of open-source data can facilitate

    2. Not all world populations have been well studied by institutional scientists, and so the open-source collection of genomes from rare and/or under-sampled populations can bring great benefits.

    3. The quality (depth and breadth of coverage) of some commercial providers is much greater than many genome scans done in academia just a year or two ago. A good library of genomes that is 2-3 years old is not obsolete, but it is much less valuable - for some uses - than a library of genomes collected publicly in the past 2-3 months.

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  9. Why would you only have to ask your siblings and/or parents and not your own children? What if they are too young to make legal decisions? Do you have to wait until they are legally able to make a decision? What if you were adopted and you don't know your biological parents. Do you you first have to find them to ask for their permission? What if you have a extramarital child that your spouse doesn't know about. Do you have to ask this child's permission as well and risk your marriage because you want your genome to be made public?

    How much of your genome do you have to share with someone to ask for permission?

    Does this also apply to mitochondrial genomes? If so, do you have to ask permission from every female alive in your family to make this data publicly available?

    When a genetic study is done in a community where little genetic information is exchanged with outside populations (in other words inbred populations), do all potential people have to give their permission to do this study, because it might reveal some genomic information about themselves?

    Personally, I don't see the big problem. Is there any reason why your name should be attached to a given sequenced and assembled genome in the public domain? Why not just use codes that describe geographical origin (if possible), age, sex, origin of DNA sample, etc. and add this information to the public domain. In other words, contribute your genome anonymously, in the same way many people leave comments in the public domain anonymously.

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  10. -DG says,

    I would agree that "the nice thing to do" is to discuss these matters with your immediate family in order to make a more informed decision in regards to data release. But I don't think you are morally obligated to have all of their permission.

    That doesn't make sense.

    If it's proper to discuss the issue with your family then surely there's a reason? If you have no intention of listening to them when they object then that's not a very "nice" thing to do, is it?

    In fact it seems downright unethical, doesn't it?

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  11. DK asks,

    So, any rule as to what members of the family have to be consulted in order to disclose your own genotype while behaving ethically?

    No "rules." Polite, ethical, behavior is too complicated to put into rules. Ignoring close family members who may be affected by your behavior is clearly (to me) not a "nice" way to behave. Ignoring cousins doesn't seem to be so bad.

    What's your point? Are you implying that because you can't draw a neat tidy line around affected family members then you are under no ethical obligation to discuss this with your sister?

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  12. anonymous says,

    I am absolutely and positively against your view and I think it is almost totalitarian to force someone to ask people he may not even like or may hate whether his most personal information may be published.

    Nobody's "forcing" you to behave ethically by taking other people's feelings into account. If you want to behave like an asshole then that's fine by me.

    (I can see why you may not get along with your close family members.)

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  13. Daniël P. Melters asks,

    Why would you only have to ask your siblings and/or parents and not your own children? What if they are too young to make legal decisions? Do you have to wait until they are legally able to make a decision?

    Hmmm ... that's pretty tricky, isn't it? Obviously your children are going to be affected by your decision to publish your genome sequence. It's even more of a problem when your spouse also publishes his/her genome sequence.

    Imagine that you and your spouse have four young children and you discover that you are both heterozygous for a number of alleles causing severe medical problems for young adults. Is that the kind of information you really want to know? Do you want to make it public?

    Now imagine that you don't yet have children. What are you going to do knowing that most of your children are going to suffer? You decide to have children anyway. People look at your genome sequences and draw certain conclusions about your ethical behavior. Conclusions that will affect you (and your children) for the rest of your lives.

    Imagine that you have made your genome public and a potential spouse of your sister checks it out. The engagement is called off. How will you feel? Was it worth it?

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  14. Larry, assuming that sharing your genome without consulting close family is "unethical" is quite an absurd leap.

    Every action you take has potential impacts on your family, and I know of no mainstream school of philosophy that would argue you must consult everyone that may potentially be impacted by your actions before you take them.

    I think your mistake is that your position fails to make an important distinction. Even if so someone opts not to CONSULT with their family before publishing a genome, that doesn't mean they failed to CONSIDER the impact on their family.

    This duty to consider the impact of your actions on others defines the ethicality of a behavior, in my mind: there is no duty to consult, nor any duty to receive prior consent.

    If someone makes a well-reasoned analysis of the potential impact of their acts, including likelihood and severity of a negative outcome, then I'd argue they've met their burden of ethical behavior.

    Sometimes that analysis may lead to the conclusion that some further reach (i.e. seeking and obtaining consent of a spouse or sibling), but that ultimately is a judgement call and one that can have a range of preferences without need to call other people's decisions "unethical".

    I don't ask my wife for permission to cross the street each time I do it, even though each decision could have huge negative consequences for her and my children. Is that unethical? I think not, and I'd argue there is more risk in crossing the average city street than publishing a genome.

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  15. Direct answer: YES (if I had a sister).
    (And I do not limit this to Huntingdon´s disease, my Von Willebrand´s syndrome or the fibromyalgia gene (EACH) would be enough to enable anybody NOT to pass them on.
    - Dear Larry, would you REALLY want me to find the rapist, who is only a dash in my birth certificate sofar, and beg him so that I can to publish my genome?
    - Would you demand that I beg the rest of the catholic abusers of my childhood?

    The very ones who would never accept my right to have no children???

    I DID notice what you think of anonymous 1, and if you think that not wanting to have to do anything with poisonous relatives is being an "asshole", so be it.

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  16. Even though there is no push for a legal objection to this I feel the attempt to have social pressure against it creeps into areas that make a mockery of the whole idea - slippery slope argument notwithstanding.

    If I have a genetic illness should I be stopped from publishing on facebook or elsewhere details about it because it may negatively impact my siblings or their children's job or insurance prospects?

    If one of my children develops a genetic problem should I be banned from writing about it as it may impact my sibling's future relationships as it could be a defect from our side?

    Perhaps the best way round this is to deny all familial relationships, claim all children are adopted from different parents so that there is no stain on their record from any problem in your genome.

    Or perhaps we just put regulations in place to stop discrimination against A because of the genome of B (or A for that matter).

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  17. 1. I think I should be able to publish my own genome, for that matter posting a picture of myself implies parents phenotype. Should you be able to disclose your own phenotype? 2. I feel compelled towards agreeing with you that one should ask or at least notify family, since one is disclosing them as well. And genotype seems more volatile then phenotype. As an aside why not publish it anonymous.

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  18. anonymous asks,

    - Dear Larry, would you REALLY want me to find the rapist, who is only a dash in my birth certificate sofar, and beg him so that I can to publish my genome?

    No. If you don't know who your parents are then nobody expects you to consult them before publishing your genome sequences. No harm will be done because your information cannot usually be traced to your parents.

    In your case, it's possible that your father could be identified if you publish your sequence. If I were in your shoes I'd want to talk to my mother before going public with my genome sequence. If she wanted me to keep it confidential then I would respect her wishes.

    You may decide to ignore her wishes and publish anyway. Many people would disapprove of your decision but you don't care, do you?

    It's not an ethical problem for you. The fact that your actions may do great harm to others doesn't outweigh the benefit of having your genome sequence published.

    By the way, what is that benefit that might cause you to lose so much?

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  19. Vincent says,

    Larry, assuming that sharing your genome without consulting close family is "unethical" is quite an absurd leap.

    Every action you take has potential impacts on your family, and I know of no mainstream school of philosophy that would argue you must consult everyone that may potentially be impacted by your actions before you take them.


    Ethical problems arise when there's a conflict in values. This is clearly an example of such a conflict. If your family members don't want their genetic information to become public, and you do, then obviously their values are different than yours.

    In most cases there isn't an easy way to resolve such ethical dilemmas. If you don't publish your genome sequence then you will be unhappy. If you do publish it then your family will be unhappy.

    It's a matter of doing the least harm. In this particular case I don't see the great harm that would come from not making your genome public. Most people who are making comments here and on RichardDawkins.net seem to treat the issue as one of conflicting "rights." They seem to think that their "rights" are being violated if they choose to respect the wishes of their family members.

    That doesn't make any sense to me.

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  20. Larry, I suspect some folks are being a big prickly about the question of 'rights' in part because - at least here in the US - there is a very real threat that we may lose the ability to have our own genomes scanned unless a doctor orders the test for us. Also, come people are civicly illiterate.

    Nonetheless, there is no doubt that I own the information in MY genome. And I think in the absence of clear evidence that some REAL harm will accrue to another party by the release of my genetic data that we should be very reluctant to inflict legal or moral restraints on what I do with my own property.

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  21. Is not the value of the information separate from the actual identity of the person? Of what scientific value is the name of the owner of the genome? Why not publish anonomously? And how can the distant descendants of a long-dead person claim any ownership over the information contained within that body? I understand the desore to do the ethical thing, but how is it ethical to deny the world knowledge?

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  22. Larry asked

    Imagine that you have made your genome public and a potential spouse of your sister checks it out. The engagement is called off. How will you feel? Was it worth it?

    Is this even a relevant question? How many cases are there know that this has happened? What is wrong with being informed? If this proposed marriage would have happened and a kid was born with a genetic disorder that could have been known if they knew that the odds were 25% anyway. Would it be ethical to keep both people in the dark, whilst they could have known, and would it be fair to the child that was born with the knowable genetic defect (albeit odds are part of equation)?
    I don't think so. I do think (actually know) that people do discriminate based on genetic information already available to them. Just think of racial profiling or sexual attraction.
    But again, why link a publicly available genome to someone name? I don't understand the absolute need for that. For personal (medical) use, sure, but for helping the scientific community worldwide?

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  23. Larry, there are a large group of people like me who don't bond with just about anyone including family. I am what is called an Aspie. My parents were foreigners and were religious, and I did not speak their language. Never liked them, could see nothing of value in them. I have 6 or 7 or 8 siblings. Don't like them and don't see them, hopefully I will never have to see them again.

    Now the family is a concept really borne of the Industrial Revolution and is an artifact of industrial societies and increased longevity. More of a neurosis than anyone natural or normal.

    No. I have never discussed or considered my family in any personal decisions, and never will.

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  24. Daniël, indeed many people who are sharing their genome scan or sequence data are doing so anonymously of pseudonymously.

    Among those who opt to attach their true name to the data, I suspect at least some of them are doing so to illustrate that the ACTUAL risk of sharing genomic data is infinitesimal.

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  25. No "rules." Polite, ethical, behavior is too complicated to put into rules. Ignoring close family members who may be affected by your behavior is clearly (to me) not a "nice" way to behave. Ignoring cousins doesn't seem to be so bad.

    What's your point?


    My point was two-fold. First was to stress that since this is as fuzzy an issue as they come, a solution as to what's ethical and what's not can only come by convention. Which, obviously, not in place yet - contrary to you implying that you just "know" what's ethical and what's not. The second (the one that you ignored) was to point out that at present DNA info is not much different from such innocuous things as photos - which you evidently don't hold to the same high standard of asking family permissions.

    To sum up, I see no compelling reason to accept your interpretation of morality and, in addition, I see your position as intrinsically inconsistent. (Not that I have any intention of publishing my DNA info attached to my real name - that is a very vain and pointless thing to do, IMO).

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  26. Since this is a fairly new area of bio-ethics, new ethical ideas will emerge. Usually one doesn't have any moral obligation to consult with siblings or parents regarding one's one life. But when a decision of mine affects a family member as well, of course there is an additional moral component involved. I don't understand why Moran is being attacked for recognizing that there are ethical implications here. I take more issue with Nielson's suggestion that the difference between himself and Razib Khan on this issue is attributable to American individualism. That sounds like complete rot.

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  27. "Nobody's "forcing" you to behave ethically by taking other people's feelings into account. If you want to behave like an asshole then that's fine by me.

    (I can see why you may not get along with your close family members.)"

    I have many arguments with family members :-) And many other things indicating good relations.

    The "close family members" is a red herring. You may be discussing every decision with them. The issue is the "tribal council" or whatever you want to call that. I call it a religious organization that is trying to use force (i.e. governmental law or lawsuit) to get me to act some way just because I may have been born from some lineage. I may not even have any extensive cultural ties, but you are saying those people can control what I do with information about myself.

    I do not subscribe that I owe something to some semi-mystical "group". Do I need to contact the German government for that side of my lineage too? Or some royal remnant?

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  28. Markk says,

    The issue is the "tribal council" or whatever you want to call that. I call it a religious organization that is trying to use force (i.e. governmental law or lawsuit) to get me to act some way just because I may have been born from some lineage.

    For the record, I do NOT support the notion that distant relatives (i.e. tribal council) have a legal veto over whether you publish your genome sequence.

    On the other hand. If you have sequenced the genome of a dead tribal member and that tribe is known to be sensitive about its genetic heritage, then consulting the tribal council seems like a very proper and respectful thing to do before making the sequence public.

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