Human rights activists and academics yesterday called on the Council of Indigenous Peoples (CIP) to better protect the Aboriginal genetic database, as many blood samples collected from Taiwanese Aborigines are sold abroad for research — likely without going through the proper procedures.
As researching on subjects related to indigenous peoples has become popular around the world, some issues that may constitute a violation of personal rights have surfaced, said Chiou Wen-tsong (邱文聰), an assistant research fellow at Academia Sinica.
“Of course most researchers would obtain a research target’s consent before taking his or her blood sample for genetic studies, but blood samples can actually be easily purchased, too,” Chiou told a forum in Taipei yesterday.
He showed participants in the forum a few Web sites based in other countries through which blood samples from Taiwanese Aborigines may be purchased.
The description of one of the blood samples on sale said the sample was collected from a Taiwanese Aborigine of the Amis tribe by a doctor at Tri-Service General Hospital “with informed consent.”
“I can’t say it for sure, but I suspect that the blood sample could be a leftover from a biomedical research project,” Chiou said. “I’m sure the doctor had informed consent from the research target, but it’s questionable whether the research target knew that his or her blood sample would not only be used for biomedical research, but also sold to a genetic database abroad.”
Echoing Chiou’s view, Hwa Kuo-yuan (華國媛), an assistant professor of molecular science at National Taipei University of Technology and an Aborigine of Atayal and Paiwan extraction, said that sometimes “informed consent” does not mean that the research target fully understands it, and disputes could occur after the results are published.
“A consent form for a scientific research study could be very complicated, and not everyone would understand it, not to mention that Aborigines have a different cultural background from the researchers, who are usually Han,” Hwa said.
Besides the mishandling of blood samples, Tsai Yu-yueh (蔡友月), an assistant research fellow of sociology at Academia Sinica, said that sometimes too many gene-based research studies would oversimplify social issues and create stereotypes.
Tsai said a psychiatrist once planned to find out why higher rates of mental disorders afflicted the Tao on Orchid Island than the national average. The researcher hypothesized that it was because the Tao lived in virtual isolation and cross-marriage and inbreeding could have been the cause.
“As a sociologist, I looked at the social side of the problem instead, and found that the hypothesis was not accurate,” Tsai said. “The higher rate of mental disorders only appeared in recent decades among the middle-aged population, who are actually the first generation to receive a so-called ‘modern education.’”
“In addition, mental disorders are more likely to occur among Tao living on Taiwan proper than those on Orchid Island,” she said, adding that marriage among relatives is actually a big taboo in the Tao culture.
Hence, the high number of Tao with mental disorders is probably a social, rather than genetic problem, and the genetic research would not help in solving the social issue at all, Tsai said.
While the genetic theory was only a hypothesis, Tsai said it had created a lot of trouble for Tao who were interviewed because many of them came to believe it was a genetic problem, and that they would avoid marriage with families with a history of mental disorders, or think their genes are inferior.
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