Indigenous people are hoping for a better response than they received at a genome scientists' meeting last week in Montreal, where they were physically prevented from entering a meeting where HGDP principals were discussing the ethics of human genome research. Here you have HGDP and other human genetics researchers discussing the ethics of their work and its relationship to intellectual property systems, and indigenous people aren't even allowed to listen to what HGDP is saying, much less comment and participate. At last count, at least 20 declarations against the project had been made by groups from across the world. Scientists developing treatments for AIDS,leukemia, obesity, asthma, Parkinson's, Alzheimer's, and other diseases use human DNA taken from remote peoples. The patented diagnostic tests and treatments that they develop can have tremendous commercial value.
Monopoly rights wind up in the hands of pharmaceutical companies.
The burgeoning trade in human genetic material is taking place in a policy vacuum. HGDP has been unable to coherently and comprehensively address this problem, yet it continues to seekfunds for large-scale collection of human tissue. Colombian indigenous people, who are coming to Washington to testify at the NAS hearing, have had direct experience with how slippery the informed consent slope is in practice. I'm alarmed that Western laws allow this, and we are not satisfied that the HGDP will be capable of insuring that our blood won't be exploited in ways of which we do not approve. It pays no respect to our dignity, culture and identity, and at the same time it will eventually turn our people away from the medical help they need.