'Vampire Project' raises issue of patents for human genes

0 Comments | Insight on the News, July 22, 1996 | by Leslie Alan Horvitz

The Diversity Project purports to study the genetic makeup of non-Europeans, but critics claim such research would crassly exploit indigenous peoples -- 'colonialism on the molecular level.'

It is unusual for a scientific initiative that exists mainly on paper to stir up controversy and set off alarms among advocacy groups. But that is exactly what is happening with the Human Genome Diversity Project, or HGDP.

The controversial "project" really is an initiative financed with a modest grant from the MacArthur Foundation. Nor is HGDP to be confused with the more-publicized Human Genome Project, which seeks to map out the entire genetic sequencing of our species -- a gargantuan $3 billion task expected to be completed by 2007. (In the United States, the Human Genome Project is run through the National Institutes of Health and the Department of Energy.)

Technically speaking, the Human Genome Project is a misnomer, says Stanford law professor Hank Greely, a member of HGDP's North American Regional Committee. "There are actually five-and-a-half billion genomes," which is just another way of saying that one individual's genetic makeup differs slightly from every other. "The Genome Project is a composite of a number of people, most of whom are European or Americans of European origin," Greely tells Insight.

That is why the Diversity Project is so important, he argues. He and his colleagues hope to investigate the genetic makeup of the entire human species -- including 85 percent of the population who do not trace their ancestry to Europe. "We want to better understand the diversity of all human beings and their biological history," says Greely. The Hans, for instance, make up most of China's -- and 20 percent of the world's--population, but little is known about their genetic background.

What could be so controversial about that? Plenty, as it turns out. And at least some of the blame can be attributed to the way in which the project first promoted itself. As an early statement declared: "The aim of the genome diversity initiative... collect and preserve samples of DNA ... from some fraction of isolated and remote tribes and populations that are in danger of becoming extinct due to influences and impacts from the outside world. It is felt that much can be learned from these samples about whole tribes and populations and their origins."

Critics seized upon such statements as evidence that project researchers wanted "to steal" the genetic inheritance of indigenous peoples and exploit it for scientific and commercial purposes. (Before they can design a vaccine, scientists often need access to genetic pools with particular traits; in this way, they can identify genes associated with a specific disease. Indigenous groups, geographically isolated and inbred, are likely candidates to harbor such genes.)

Critics also claimed that the project had drawn up a `target list' of tribes numbering 500 to 700. (According to Jason Clay, a research director for Cultural Survival, a nonprofit group in Cambridge, Mass., there are approximately 5,000 indigenous groups in the world, totaling about 600 million people.) And they coined their own name for the Diversity Project, the "vampire project," which stuck.

Greely denies there was a target list as such. "The idea was to set priorities as to what populations we'd sample based on linguistic and cultural back-grounds" -- a kind of wish list intended for grant applications, he says. In reality, the selection process is more likely to be based on the interest of researchers and the willingness of subjects to cooperate. That, he insists, makes it a random selection.

Some critics are adamantly opposed to collecting gene samples altogether, including Debra Harry, a Pauite Indian from Nevada and a leading advocate for indigenous peoples. "Now it's colonialism on the molecular level," she warns. "For us, genes are our ancestry, our heredity and our future generations. They are not to be tampered with." Others fear that researchers will treat tribal people shabbily. Alan Swedlund, head of the anthropology department at the University of Massachusetts, charges that project managers -- who, he claims, have ignored the plight of aborigines in the past -- "now want to swoop in, collect blood for their own scientific goals and then leave people to their fate." Cultural Survival's Clay deplores the idea of spending millions to save genetic material gathered from indigenous people instead of using the money to help save the people themselves.

Ironically, the incident that stirred up the most controversy had nothing to do with the project - at least, not directly. Even so, critics view it as a textbook case of what could happen if the project were realized.

The incident in question came to public attention on March 14, 1995, when the Rural Advancement Foundation International, or RAFI, a small advocacy group based in Canada and the United States, announced that the American government had "issued itself a patent on a foreign citizen" -- a member of the Hagahai tribe from Papua New Guinea stricken with a rare form of benign leukemia. According to RAFI, the NIH had deprived the tribesman of the right to his own genetic material. "Once you allow patenting of any life form, you pretty much end up patenting all life forms," declared Pat Mooney, head of RAFI. "This was an especially outrageous example."