By LARRY MORAN - SANDWALK
Added: Tue, 11 Oct 2011 18:44:27 UTC

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?]
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TAGGED: GENETICS, MORALITY