On January 15, the Tribal Council of the federated Salish and Kootenai tribes voted unanimously to oppose a program known as the Human Genome Diversity Project (HGDP), a massive international research endeavor to collect human genetic samples. In the words of the project's pundits, the aim of the HGDP is to "help reconstruct the history of the world's populations, address questions about the history of human evolution and migration patterns, and identify the origins of existing populations." Ideally, it seeks to collect cell samples from about 500 indigenous communities around the world. But at least in North America, tribal groups have loudly denounced the project, which may help explain why the HGDP hasn't received any funding in the United States. So far, no samples have been collected anywhere in the Western Hemisphere.
Hank Greely, a professor of law at Stanford University, where the North American arm of the HGDP is headquartered, and a member of the HGDP committee, acknowledges that the project is primarily of historical and cultural interest, rather than medical, but he says an attempt to archive human genetics shouldn't merely include European Americans.
"It has as much or as little value as any historical information," Greely says.
Although members of the Flathead Reservation's Tribal Council were unavailable for comment, Debra Harry, the coordinator of the national Indigenous Peoples Coalition Against Biopiracy, says that, contrary to what project organizers claim, the study has no medical or historical value.
"This project, out of all genetic research, has absolutely nothing that can benefit a participating tribe," she says. "There's the possibility of great harm, since this is anthropological research which they probably want to use to prove some 'Out of Africa' theory."
Harry, a member of the Northern Paiute tribe in Nevada, maintains that information from the HGDP wouldn't affect her tribe's perspective of who they are or where they come from.
More importantly, Harry says, the risk of secondary use of the cell samples is too great to justify tribal participation. She describes genetic research as a billion-dollar industry that benefits a relatively small group of people.
"There are a lot empty promises in genetic research," she says. "It benefits corporate shareholders and the researchers who get recognition. But the general public probably won't see any gene therapy. There won't be any treatment or cures."
She also points to a recent ruling by the California state Supreme Court that characterized genetic material taken from a man as no longer belonging to him once it left his body.
According to the HGDP's plans, genetic samples taken for the project will be "immortalized," or transformed into replicating cell lines, and stored in gene banks around the world. Harry says this scenario would result in unlimited amounts of DNA, which she says could then be sold to researchers.
Greely says the North American segment of the project guarantees no second use of the samples, and he adds that anyone seeking to use them would have to promise to obey any limitations put forth by the sampled populations. Greely admits the guarantee can't be absolute, but he says it is "infinitely better" than past scientific procedures.
"Genetic research has been going on for a long time, but it has mostly gone on invisibly-without the scrutiny we propose," he says. "It's not perfect, but it is an enormous step forward."
Greely also states that he only wants tribes to participate in the HGDP if their leaders agree to it, and that researchers must obtain informed consent before any blood can be drawn. He uses the Flathead Reservation as an example, saying that even if a Salish-Kootenai person living in San Francisco wanted to participate in the project as an individual, because the Tribal Council has forbidden it, that person would not be allowed to.
"It's a path-breaking ethical procedure, and that is my answer to Debra," Greely contends.
Harry counters that to hear Greely describe the HGDP, it sounds like "the greatest thing since sliced bread," but a prospective sampled community may not understand the implications of genetic research as explained by those collecting the DNA.
"They would be at the total mercy of the project," she says.
For his part, Greely maintains that, in addition to providing historical information, the HGDP findings could provide clues about genetic medical conditions, as well as human population variation, proving that everybody in the human species are essentially cousins.
"This is a positive, important, fascinating field and that justifies its existence," he says.
Nonetheless, Harry avers that the Indigenous Peoples Coalition Against Biopiracy, which was organized in 1997, will continue to voice opposition to the project she sees as a sort of white man's folly.
"Generally, this is for the elite scientists who have money and freedom," she emphasizes. "We are objects of curiosity. And people who can afford gene therapy are also the elite. We have a Third World country situation on many reservations. If they really cared about human beings, they'd work for clean water, food and access to land."