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When you call the American Type Culture Collection and ask for CRL-10528, you’ll get this man’s “cell line”—a group of human cells that contains an individual’s complete genetic code. Remarkably, that his genome can be found only in this way reflects a victory: His cell line was Patent No. 5,397,696 until international protests forced the U.S. government to drop its claim, in part because his cell line was taken without consent.
Companies have two incentives to secure patents, which confer exclusive use rights over genetic material: Any profits from drugs developed through patented data go directly to the holder, and any future researcher wishing to use patented data typically must pay a royalty fee. This is true even in cases like that involving the Hagahai people in which genetic material was taken without their consent.
A genetically engineered future has consequences for everyone. But this is especially true for native people.
According to the U.N. Development Program, 80 percent of the world’s remaining biodiversity is located in indigenous territories. And the people who live there are thought to offer “narrow” gene pools—or distinct populations that can facilitate genetic study.
But a disjuncture between native belief and Western science also occurs at the most basic level: Many native people hold that all life is sacred. And to remove part of it, even a blood sample, can restrict one’s ability to pass into the next stage of life.
“There’s no natural fit there,” says Debra Harry, a Northern Paiute Indian and executive director of the Indigenous Peoples Council on Biocolonialism (IPCB), a nonprofit watchdog organization.
Deepening the concern over genetic study is a lack of standards. In many cases DNA has been obtained and patented without prior approval or a full understanding of what is at work. Private companies are the most active gene hunters. But they are not subject to strict federal regulatory and oversight guidelines if they don’t take public dollars. Additionally, if a cell line helps develop the next Viagra, nothing forces these companies to share proceeds with the person from whom the genetic information came. In other words, private companies can go onto reservations without disclosing what they’re doing, take DNA samples without saying why, get rich from the information, and not share the bounty with its often impoverished source.
“All over the world, indigenous peoples have been able to maintain our culture and exist despite the negative effects of colonization,” says Tom Goldtooth, director of the Indigenous Environmental Network. “We have some strong genes. Our genetic pool is something that scientists in industry are interested in.
“Our organization is very cautious of any market-based solution for trade in pharmaceuticals,” he adds. “I don’t trust [indigenous genetic] information being held by systems outside our community, systems that have never been accountable.”
A long history of colonization has created particular sensitivity among indigenous peoples to issues of honesty, respect and consent, and these feelings intensify when research subjects are duped. Judy Gobert, of Blackfeet, Nakota, and Salish descent and chairwoman of the IPCB board, has a background in microbiology and biochemistry and formerly conducted research into HIV. But when she gave birth to her first child in 1989, she unwittingly became part of a federal study on maternal transmission of HIV.
Fetal blood from every baby born in Indian Health Services hospitals at the time was tested for the disease—without informing the mother. Gobert didn’t find out she’d been a research subject until the study was released two years later.
“In Indian Country, we were scared to death of AIDS at the time. We would have gladly participated in the study if they’d asked us,” says Gobert, now director of the Indigenous Research Center, a health advocacy organization.
Native people in the United States aren’t the only ones who face these issues. British Columbia’s Nuu-chah-nulth tribe gave hundreds of blood samples in the early ’80s for an arthritis study and were shocked to learn two decades later that the researcher had kept nearly 1,000 vials of their blood for use in future work—for which tribal members had not granted permission.
With or without consent, Indian communities rarely benefit from genetic studies. In the HIV study, for instance, no research subject was told if her child had the virus despite knowledge that early treatment increases life expectancy.
The question of who benefits goes deeper. Gobert contends that emphasizing DNA as an answer itself shortchanges indigenous people: Treating genetics as a silver bullet for disease often comes at the expense of funding treatment and prevention strategies that are more proven to work.
“Now we have this new breed of magic potion salesman, only they’re called genetic engineers,” Gobert says. “They’re saying ‘we can cure diabetes, we can cure heart disease.’ But people, native and non-native, are seeing that many of these diseases are lifestyle diseases, not genetic diseases.”
The gene chase diverts attention away from what is desperately needed in indigenous communities: Prevention, the organization argues, is the best way to reduce Indian Country’s deadly and debilitating diabetes epidemic; lifestyle education could fight heart disease and hypertension; addiction treatment programs for alcoholism can halt more alcohol abuse than a search for some “binge-drinking gene.”
This isn’t to say genetic science could never benefit tribes. Lisa Brooks, director of the genetic variation program at the National Institutes of Health, disavows genetic determinism—the notion that genes make up all of who we are—but says DNA research has potential.
“The goal is to understand the gene process in a way that allows you to intervene,” Brooks says. “If you can find a gene that affects diabetes, that gives you insight into how the disease works. Finding a gene helps you understand how genes and environmental contributions interact to produce a disease.”
That’s far from a sure thing, Brooks acknowledges. Scientists have known about the variant gene that causes sickle-cell anemia, a painful and usually fatal blood disorder affecting one in 12 African Americans, for decades without producing a cure.
Though genes guarantee nothing, DNA patent applications continue to explode, especially among U.S. corporations. Lawrence Rausch of the National Science Foundation says 7,810 “international patent families”—items protected by patent in more than one country—for human DNA sequences were issued between 1980 and 1999. Of those, the United States secured 5,610. That’s 72 percent of the total and nearly 5,000 more than its closest competitor, Japan. Over 400 American corporations applied for patents, more than twice the number from Japan and the unified European Patent Office combined.
Like gold miners before them, gene prospectors stake claims over parts of the human genome in the hopes of hitting the financial mother lode. “It’s about money now—it’s not about the science,” says Gobert.
Several Indian nations have responded by passing anti-bioprospecting laws. The Confederated Salish and Kootenai tribes adopted a resolution in 1998 severely restricting genetic research on their Montana reservation. The resolution declared, “Scientific research and genetic exploitation of indigenous peoples represents the greatest threat to American Indians since the European colonization of the Americas.”
Other tribes have followed suit, using a “model law” developed by the IPCB as a template.
Some would just as soon be subjected to no genetic research whatsoever. Among those who don’t rule out the prospect, two fundamental demands emerge:
Informed consent: Glossing over what research involves or taking consent as a given, including so-called “secondary uses” of samples like the Nuu-chah-nulth blood, represents profound disrespect. When asked if gaining prior and full approval makes a difference to native people, Gobert replies simply, “Oh, God, yes.”
Meaningful and binding consultation: This matters so much to U.S. native leaders that they elicited a 1998 presidential executive order reaffirming an obligation to consult tribal governments “on matters that significantly or uniquely affect their communities.”
Working at the ground level with tribes and tribal governments has been effective for Indian people and researchers alike. Gobert cites the work of researcher Dr. James Jarvis with the University of Oklahoma Health Sciences Center as example. Jarvis is working with tribes to improve diagnosis and treatment of rheumatoid arthritis, one of the most common debilitating conditions affecting Indian people. Indigenous people aren’t opposed to research, Gobert says, and support “valid DNA studies” like this that are “of value to people, and being done sensitively” in cooperation with tribal councils and affected communities.
“It’s not that we’re against science,” Gobert says. “We see science as a tool—a tool to preserve our land, our water, our air, our plants—not as a weapon, not as a way to make money. So we have a different view of science than the majority of the Western world.”
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