Do the genes belong to the tribal council?
There has been lot of debate about tribal consent since the publication of the first aboriginal genome. Nature ran a news story debating issues regarding tribal and individual consent for genetic studies and Razib Khan wrote a blog about it at Discover Magazine. Razib Khan’s perspective is perhaps the most interesting and informed. He is commenting on the claim by Eske Willerslev that we would not have published the study without tribal consent. Khan’s arguably very American perspective on this, is that only individual consent can matter. The opinion of tribal councils or any other institutions regarding release of personal genetic information is irrelevant. There is no reason to consult such institutions – only the individual matters. An entirely defensible position. It is certainly the position of the legal community in America and perhaps most of the scientific community. But there are a couple of reasons why the story in this case is a bit more complex. First, as noted in one of the online comments on Khan’s blog, the genome sequenced was from a deceased individual with no identifiable descendants. We could not obtain informed consent from the donor or from his family. In our opinion, the correct thing to do was then to consult with the local representatives of the group to which the donor belonged. After considering different options we determined that the Goldfields Land and Sea Council was our best option. Secondly, and most importantly, there is a several hundred year old tradition for exploitation of indigenous people by anthropologists, who until recently systematically have failed to recognize the rights of indigenous people. This dark historical relationship between indigenous people and anthropologists makes it particularly important to involve the local indigenous communities in scientific studies. Our approach was to reach out to the local tribal council to work with them in the interpretation and presentation of our results. I strongly believe that is the right thing to do and I hope other geneticists will do the same thing in the future when working on questions relating to indigenous people. I am not advocating granting particular institutions the power to veto studies that individual members of the community consent to, but I would encourage researchers to involve the local community as much as possible. You do that out of respect for the local community and to promote and enable a good relationship between indigenous people and the scientists who wish to learn from them.
Khan also used our paper to revisit an old discussion regarding ownership of genetic information in the context of familial relationships. He writes:
“I have addressed the issue of whether identical twins have “rights” to each others’ genomes. For example, if one identical twin put their genotype into the public domain, would the other be within their rights to object? 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”.
The individualistic view again dictates that my personal information is for me to disclose, even if doing so could affect other people. He further writes:
“But in the area where genetics and ethnology intersect too often people overestimate the power of genetics to totally reshape how we view ourselves, and how we view other human beings. The reality is that we are what we are, before and after we find out what we are in a more scientific and abstruse fashion”.
I strongly agree with the second point. In fact, the predictive power of genetics is hugely exaggerated in the public perception. Revealing your genomic information reveals very little about you – at least here in 2011. Our abysmal ability to predict phenotypes in humans from DNA data has been one of the big disappointments of human genetics in the past 10 years, although some researchers such as Dick Lewontin predicted this outcome before even the first human genome was sequenced.
Even though I agree with Khan’s second point, 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 is 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.
The same thing goes for genetic studies of indigenous people. While perhaps we should not allow particular tribal organizations to yield veto power over scientific studies, it would behoove us as scientists to consult with them as much as possible. Perhaps the genes do not belong to the tribal council – but they certainly do not belong to the scientists. We have hundreds of years of abuse to make up for – and starting by consulting the local community when conducting research is but one small step.