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.
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