And now:[EMAIL PROTECTED] (S.I.S.I.S.) writes: LET'S MAKE A DNA DEAL The Globe and Mail, December 7, 1998, by Carolyn Abraham [S.I.S.I.S. note: The following mainstream news article may contain biased or distorted information and may be missing pertinent facts and/or context. It is provided for reference only.] Not so long ago, potatoes and turnips were the only produce available at the grocery store in the remote community of Sandy Lake, Ont. Now, there are rows of green peppers, broccoli and leaf lettuce. It was part of the deal. The Ojibwa-Cree who live there made sure of it. When researchers wanted to hunt for the genetic traits that had caused the Sandy Lake First Nation to have the third-highest diabetes rate in the world, the people had some requests of their own. Anthropologists, sociologists and housing planners had journeyed to the Northwestern Ontario reserve many times in the past. They had come toting surveys, questionnaires and empty promises. "People were just sick of research projects, being asked questions and never seeing any kind of return on that," Deputy Chief Harry Meekis said. "We learned from experience." In return for residents giving researchers samples of their DNA to unearth the genes responsible for their diabetes epidemic, the band council asked for fresh food, expanded medical services, special school programs and royalties from any cash that flows from the project. They got it all. The deal makes Sandy Lake one of the few places in the world where a community has negotiated compensation in exchange for the DNA of its members. To scientists and a growing number of firms searching for genetic mutations that cause diseases, DNA is a precious resource. Billions of dollars in revenue await if they can locate a culprit gene and find a way to stop it. The prospect of eliminating ailments at their root has sent gene hunters on a search to collect DNA from homogeneous populations. Yet nowhere has this been challenged more than among indigenous people, whose bloodlines have attracted researchers for centuries and whose leaders have historically been deal makers. The irony of Sandy Lake is that the Canadian researchers spearheading the project are hardly flush with cash. The genes of the Oji-Cree are believed to have limited profit potential. The Sioux Lookout Zone is the size of France, named for a gentle rise where tribes watched for the approach of warring Sioux from the south. It stretches 250,000 square kilometres across the Canadian Shield, a dense cloak of bush, forests, rivers and streams. Thirty native communities are nestled within it. The only road connecting them and the world outside is a two-month winter route across frozen lakes. Most visitors come by boat, plane or snowmobile. Government treaties created most of these reserves in the early 1900s. Sandy Lake is one of the oldest, a village carved from the woods near the Manitoba boundary. Its birth eventually brought heated cottages, chesterfields, junk food, satellite television and the Sho-goh-wah-pee-nay -- native terminology for diabetes, "the sugar disease." Sandy Lake's 2,000 residents know it well. Diabetes has cost many of them their sight, their limbs and their kidneys. When Stewart Harris arrived, the band council had a simple question: "Why is there so much?" Dr. Harris had been posted as the medical director of Sioux Lookout in 1990. He was 33 at the time and fresh from a development project in Nepal. Sandy Lake, like most of the reserves in the Sioux Lookout Zone, had its own Third World conditions. Close to 80 per cent of the population collected unemployment. Running tap water was a novelty. Government-issue, two-bedroom homes slept 10. Some were so dilapidated "you wouldn't park your car in it," Dr. Harris said. But it was the sugar disease, not economics, that required immediate attention and he telephoned Bernard Zinman, director of the Banting and Best Diabetes Centre at the University of Toronto and a senior scientist at the Samuel Lunenfeld Research Institute at Mount Sinai Hospital. The two doctors agreed that Sandy Lake's diabetes would first have to be quantified. But that would mean surveys and questionnaires. They had to meet the chief. Mr. Meekis recalled the advice the doctors were given. "We told them, 'You will need the support of the community, not just the council,' " he said. "This meant the doctors could not dictate the position." For the next 18 months, Dr. Harris and Dr. Zinman spoke with the people of Sandy Lake. They also scrambled for money to fund their research. Ontario said no. The federal government said no. The U.S. National Institutes of Health gave them $25,000 (U.S.). "We went back to the Canadians and said, 'Look, the Americans think this is interesting. Don't you think it should be interesting to you?' " Dr. Harris said. Both the provincial and federal governments reconsidered and over the years have provided $950,000. Part of that money allowed the diabetes-prevalence study in Sandy Lake to begin, and when it was over the results were staggering: 25 per cent of the residents had diabetes -- five times the national average. The rate was 50 per cent among those over the age of 50. Early signs of the disease could be detected in children as young as 10. The incidence of diabetes is notoriously high among native populations. The world's highest rate belongs to Arizona's Pima Indians, whose hunting and gathering were also replaced by the sedentary ways of the white man. The Naurua natives of Micronesia claim second place. Their Pacific homeland lies directly beneath the path of migratory birds and after they abandoned their traditional lifestyle to mine the phosphate-rich guano that had dropped for eons on their island, diabetes arrived. Wealth had made them sick. Only in the past 30 years had diabetes appeared in Sandy Lake, and already it had zoomed to No. 3 on the list. Doctors had known the truth from the beginning. The mix of genetics and environment had produced a foul stew. In 1995, Dr. Zinman got in touch with Robert Hegele, then a geneticist in Toronto who was schooled in the methods of gene hunting. When Dr. Hegele heard the story of Sandy Lake, he thought immediately of the 1960s theory that aboriginal people had "thrifty genes." "These were genes that were supereconomic with calories," Dr. Hegele said. When native people lived as nomadic tribes, it was feast or famine, and most often famine. Their metabolism used every smidgen of energy ingested, storing the excess for the lean times between hunts. But now it's feast and feast and the grocery store carries the same items you'd find at a 7-Eleven," said Dr. Hegele, who has since moved to the Robarts Research Institute at the University of Western Ontario. "Their metabolism still tends to treat every morsel that passes their lips as caloric gold. They hold on to it, become obese and develop health problems, like diabetes." Dr. Hegele felt that several "thrifty genes" had remain unchanged in the people of Sandy Lake despite the rapid change in their environment. Gene hunting would mean another study and another meeting with the chief. Chief Eli Sawanas, Mr. Meekis and an elder named Walter Kakepetum flew the 2,000 kilometres southeast to Toronto in the winter of 1995. They arrived at Mount Sinai's boardroom table in jeans and casual shirts and sat among the suits and ties of the hospital brass and listened. Dr. Hegele told them that their people's diabetes was like car trouble. Their bodies were getting lousy gas mileage and he was the mechanic who would figure out why. "Was it the carburetor, the engine?" he said. He would have to unravel their DNA to find the genes that were instructing their bodies to hoard the calories and sugar -- the genes responsible for their Sho-goh-wah-pee-nay. If he could pinpoint them, he could tinker with them and perhaps even find a way to reverse the damage they were causing. The project might draw financial backing from a drug company interested in developing a therapy for diabetes, hospital officials said. Obviously, the researchers would need the blood of Sandy Lake residents to harvest their DNA. Then there was a pause. "What do you want?" the hospital officials asked. It was Mr. Meekis's turn to speak. "It was the most riveting moment when Harry got up," Dr. Harris said. "Here was this man who'd grown up on the trap line and I don't know what grade he got to, but he was the most powerful speaker I'd ever seen. You would have thought that what with them coming down from the North to this downtown corporate world of Toronto, they would have been uncomfortable. It didn't show." Mr. Meekis, 40, had no formal education. He was born in the bush, was taught by his grandfather and grew into a voracious reader. In adulthood, negotiations became Mr. Meekis's specialty. He is in charge of the construction of an $18-million water-sewer system in Sandy Lake, a $10-million school and an $8-million project to retrofit homes. "We want an agreement," Mr. Meekis told the hospital officials. "Most people who do genetic research... don't ask what the other side wants," Dr. Zinman said later, "but one has to appreciate the community and their participation." Mr. Meekis talked of partnership, the community's contributions, and he said that if a discovery were to bring a windfall the people of Sandy Lake should receive a share of royalties. The researchers went one step further. They said Sandy Lake should receive it all. A photograph of Mr. Meekis, Mr. Sawanas, Mr. Kakepetum and Mount Sinai Hospital officials now hangs in the band council office. Chiefs meeting chiefs. The diabetes project at Sandy Lake has changed the reserve. Fresh food is flown in to the grocery store, where signs posted in the native language indicate healthy choices. Families receive guided tours of the shopping aisles, home visits from a nutritionist and classes on health-conscious cooking. A special diet and exercise curriculum have also been created for children in Grades 4, 5 and 6. The three doctors make regular visits and believe the lifestyle "interventions" are an essential part of their project, which is partly sponsored by Kraft Ltd., Eli Lily Canada Inc., the Samuel Lunenfeld Research Institute and the University of Toronto. Genetics paints only half the picture, they said. This is just as well: The gene hunt has plodded along on a shoestring budget and it is not likely to get much richer. The doctors have asked, discussed and solicited. But no drug company will bite. The suspicion is that genes linked to diabetes in the Oji-Cree are unlikely to yield a promising therapy for the general population. The native band's battle with the Sho-goh-wah-pee-nay is too unique. Dr. Hegele is not disappointed. For the past three years, he has been sifting through their DNA, backed by modest amounts from the Canadian Diabetes Association and the Medical Research Council of Canada. A family in London, Ont., donated the funds for the gene sequencing lab where he works. "I'm not opposed to finding funding for it, but I think having an industrial sponsor would complicate things," Dr. Hegele said. "Industrial funding usually comes with strings attached; there are conditions on reporting findings and scientific autonomy." He hopes to publish his findings early next year. The discovery may not make Sandy Lake residents rich, but Mr. Meekis hopes that it will make them well. "We don't to be known as the community with the third-highest rate of diabetes in the world," he said. "We want to be the community that turned the problem around." :-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-: Letters to the Globe and Mail - mailto:[EMAIL PROTECTED] 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. :-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-:-: S.I.S.I.S. Settlers In Support of Indigenous Sovereignty P.O. Box 8673, Victoria, "B.C." "Canada" V8X 3S2 EMAIL: [EMAIL PROTECTED] WWW: http://kafka.uvic.ca/~vipirg/SISIS/SISmain.html SOVERNET-L is a news-only listserv concerned with indigenous sovereigntist struggles around the world. 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