[source: NativeNews; Mon, 18 Sep 2000 21:44:58 -0400$ Gene research seen as biopiracy http://www.ronan.net/~ckn/news4.html by Ron Selden for Char-Koosta News BILLINGS -- According to Native American beliefs, all life is sacred and should not be tampered with. That's why native activists from around the nation are taking aim at bioengineering projects that clone animals, create new plant species, and splinter human genes into their tiniest fragments. What's especially galling to tribal high-tech opponents is the fact that most of the research is being done for profit, often at the expense of indigenous peoples and their traditional ways. "Anything that's living can now be owned," maintains Judy Gobert, chairwoman of the Nevada-based Indigenous Peoples Council on Biocolonialism and dean of Salish Kootenai College's math and sciences programs in Pablo, MT. Gobert, who also serves as chairwoman of the American Indian Science and Engineering Society, says biotech companies, backed up by the federal government, know no boundaries when it comes to studying native peoples. "It's becoming a little more twisted as it goes along," she told a recent national gathering of Indian health leaders in Billings. "They want your genes. They want the things that make us up as human beings." Researchers have long been intrigued about the migration of native peoples across the former land bridge between the Aleutian Islands and Russia. Studies of northern-tier natives have been going on for decades, but Gobert says the new twist is that DNA samples are now being used to determine who may have come from whom and where. DNA is short for deoxyribose nucleic acid, which acts as a codebook for genetic origin. While some of the research has undeniable value, Gobert says tissue, blood, hair and other samples are often obtained without the informed consent of donors, who may have unknowingly contributed the samples through routine medical exams or through other sources who didn't reveal the material might be sold to third parties. Gobert, a former acquired immune deficiency syndrome researcher, says she discovered a few years ago that her own blood was used for an Indian Health Service AIDS study without her direct consent. When she questioned federal officials about the matter, she says she was told the study was "in the national interest," so specific permission was not needed. "It's very insidious," she says. "They're treating us like we're stupid Indians again. There's secondary uses going on all over the place." According to Gobert, at least 300 Indian tribes have been targeted for study by the National Institutes of Health, other government agencies and private biotech firms. She maintains most tribes, already suffering shortfalls in basic health care services, will see no benefits from the studies. "They want to know why our hair is brown and why our eyes are black," she says. "They're looking for the differences between us, but it's based on faulty science." One high-profile battle over DNA research involves the so-called "Kennewick Man," a 9,300-year-old skeleton found in 1996 along the Columbia River in Washington state. Scientists, including two from the Smithsonian Institution, want to determine the skeleton's genetic origin. Umatilla Indians contend the bones should be reburied immediately, without further study. Researchers sued, arguing that there's no proof the skeletal remains are related to the tribe. The issue remains bound up in court. Researchers also have special interest in native peoples because some groups have unusual immunity or propensity for various diseases, and scientists want to figure out why. But Gobert says the biotech field has become so commodity driven that Indian genetic samples are now available over the Internet for as little as $209. Patents on plant, animal, and genetic material can be obtained by nearly anyone, and few ethical guidelines are in place to ensure that basic human rights are not violated, she says. "It's sexy science," she says. "They can get a lot of money for it. There's big money behind this, and that's what it's all about." "This is colonialism, just like land patents" that opened up reservation lands to non-Indian settlers, adds Brett Lee Shelton, an attorney who directs the council's policy and research program. "Now they want to breach the boundaries of your own bodies." Also stirring up "biopiracy" opponents is the creation of new plants and the alteration of plants and animals through genetic engineering. Transgenics, which breaks down natural borders by crossing species that would not normally interbreed, has resulted in scientists injecting "fish genes into tomatoes, petunia flower genes into soybeans, bacteria genes into corn, cow growth hormones into chickens, and human genes into tobacco, kiwi fruit, mice and sheep," according to one of the group's publications. "It's hard to keep track of it all," Shelton says, added that it is a violation of Native American values to dice up cells, manipulate natural systems, and artificially suspend life in test tubes and freezers. While genetic engineering has produced new strains of food crops that are at least temporarily resistant to various pests and diseases, activists also worry about potential unintended consequences, such as unleashing new biological materials that could wipe out native plant and animal species. Another aspect of the biotech battle, Ms. Gobert and Mr. Shelton say, is the effort by some pharmaceutical companies to surreptitiously obtain information about plants and herbs used traditionally by native peoples for food and medicines. Once the companies get the details through "bio prospecting," some try to patent their uses. "Then they get the copyright and they own our knowledge," Shelton says. According to Gobert, the Confederated Salish and Kootenai Tribes have already banned non-Indian outsiders from collecting medicinal plants within the Flathead Reservation. The tribes in 1998 also approved a resolution condemning the federally financed Human Genome Diversity Project, as well as other "unethical genetic research on indigenous peoples." The diversity project has drawn particularly heavy fire from Indian leaders, who contend minorities will be a central part of the study to determine how genetic makeups are distributed. Gobert and Shelton say some biotech companies have become so desperate that they've had representatives approach Indian school children in California and offer them $100 for a single blood sample. Other targets, Shelton says, are indigent Indians who live in urban areas, especially those "who are down on their luck." "This is something that's going on very quietly," he says. "They're not going to tell you exactly what's going on." Activists say it's important for tribal governments to band together and fight attempts to alter the natural world. They say tribes also need to prod the federal government into exercising its trust responsibility to protect Indians from this latest round of theft. "It's greed and racism fueling this thing," says Salish and Kootenai Tribal Council member Kevin Howlett. "People need to know the potential for disaster is there." === [from Paul Pureau. Thanks!] Indianz.Com. In Print. http://www.indianz.com/SmokeSignals/Headlines/showfull.asp?ID=lead/9192000 Experts issue gene research warning SEPTEMBER 19, 2000 In a new report, scientific experts are issuing a warning against experimenting with human DNA, targeting a specific type of gene modification they say is unsafe and unproven. Inheritable genetic modification "cannot presently be carried out safely and responsibly on humans," said the group, whose findings were published in a report prepared by the American Association for the Advancement of Science (AAAS). Gene modification has been in the news lately, particularly with recent advances in the Human Genome Project. But most of the research and experimentation has been on changing the genetic makeup of just one particular human. Known as somatic gene modification, this type of therapy alters a person's non-reproductive body cells. Research in this area often focuses on treating or correcting disease in one human. On the other hand, inheritable genetic modification (IGM) is designed to alter one's reproductive cells. Changes would therefore be seen in his or her descendants. IGM could be applied in several ways. Parents could potentially create "designer babies" by modifying sperm and egg cells to receive desired characteristics such as height or hair and eye color. Or, a person's genes could be modified to ensure that his or her children don't get an inheritable disease. Whatever the application, the experts are voicing concerns. Not only are techniques used in somatic gene modification inappropriate for IGM, the group says more attention needs to be paid on potential side effects of somatic research. The experts also say modifying reproductive cells could worsen discrimination against people with disabilities, widen the gap between the "haves" and "have nots," and change the way humans interact with one another or parents interact with children. With recent successes in cloning animals, such as mice, sheep, and cows, many have wondered if the cloning of humans is near. However, the report points out that successes only come after several hundred attempts, underscoring a fundamental ethical issue regarding new scientific techniques. New medical research often involves unknowns, imperfections, and inefficiencies. Scientists who conduct gene modification on animals, however, don't have room for "mistakes" once they begin experimenting with humans. "The imperfect efficiency of gene transfer that is tolerable in animal studies would be not acceptable for humans," states the report. "Nor would it be acceptable in humans as it is in animal studies to eliminate damaged offspring in unsuccessful experiments..." The experts are recommending more public education and discussion about IGM. Society, as a whole, must decide if and how experimentation on humans will ever begin. In making their findings, the experts considered various religious and cultural issues. The report only mentions the discussion of Judeo-Christian traditions. === [from Paul Pureau. Thanks!] Indianz.Com. In Print. http://www.indianz.com/SmokeSignals/Headlines/showfull.asp?ID=health/9192000 -1 Doctor foresees benefits for Indians SEPTEMBER 19, 2000 Advances in human genome research will lead to benefits for American Indians and Alaska Natives, says Dr. Clifton Poodry. Poodry is a director within the National Institute of General Medical Sciences, one of the National Institutes of Health (NIH). Along with the Indian Health Service, Poodry's Division of Minority Opportunities in Research recently announced a new program aimed at helping tribes conduct their own research into medical conditions and disease affecting their communities. Like most Americans, Native Americans often treat their diseases and conditions with drugs. Whether used to help one's body utilize insulin or regulate high-blood pressure, medicines are a daily fact of life for many in Indian Country, and it is in this area Poodry foresees genome research changing the way Natives battle diabetes, hypertension, and other conditions. "One of the things that will really benefit Indian communities is going to be how doctors choose medicines," says Poodry. "People recognize that not all medications work for everybody. Better prescription is one of the promises of the future." Often times, Poodry says, one drug which helps one person won't have the same effect on another. But if a doctor knows a patient's genetic makeup, he might be able to prescribe a more suitable drug. "Imagine if you could be more assured that when you go in to see a doctor, if he knows a particular drug isn't going to work, he'll prescribe a different one," says Poodry. "Or if he knows that one drug is safe in 95 percent of the population but toxic in you, it will eliminate some of the trial and error." But Poodry cautions that Native Americans can't rely on genome research to cure all of the ills which affect Indian Country. Poodry says the key to battling diabetes, obesity, and drug and alcohol abuse is changing behaviors. "In something like diabetes -- yes it's really linked to genes. But the environment plays a much greater role," says Poodry. "You can have genes that predispose you to diabetes, but if you have a healthy life, you can go through your entire life and never become fully diabetic." With diabetes in children showing up earlier and earlier, adopting healthier behaviors is necessary in order to stop the "terrible downward spiral" in Indian Country, says Poodry. "Its one thing to say 'Yes, we over eat,'" he adds. "Its another thing to say 'How are we going to change that?'" Relevant Links: The National Institute of General Medical Sciences - www.nigms.nih.gov Division of Minority Opportunities in Research, NIGMS - www.nigms.nih.gov/about_nigms/more.html Copyright © Indianz.Com 2000. [In accordance with Title 17 U.S.C. section 107, this material is distributed without profit or payment to those who have expressed a prior interest in receiving this information for non-profit research and educational purposes only.]