by Dr. Hsien-Hsien Lei
Posted June 28, 2007 in DNA Around the World, DNA in General
The Karitiana Indians of the Amazon feel as if part of their heritage has been auctioned off by researchers who misled them. They first gave their blood in the 1970’s after making contact with “the outside world.” In 1996, they again gave samples of their blood in exchange for medicine, which the Karitiana Indians claim they never received. Similar to the American Indians who were studied to investigate the relationship between the MAOA gene, childhood sexual abuse, and alcoholism, Amazonian Indians live in closed communities where their lifestyle, living environment, and disease inheritance patterns make it easier to conduct genetic studies.
But the extent to which their genetic data would be used was not clear to the Karitiana Indians when they donated their blood. To their shock and anger, they recently discovered that their DNA is now being sold via the Coriell Institute for Medical Research which is funded by the US National Institutes of Health and other givernment agencies. You can obtain a listing of 25 cell cultures from the Karitiana Indian people with details such as race, age, gender, and disease status. A 1.0 ml cell culture costs $85 while 0.05 mg of DNA costs $55.
The situation is not as sinister as it seems, however. The Corielle Institute sells specimens only to scientists who sign an assurance form agreeing to guidelines that specify:
- That the biomaterials will be used in compliance with all regulations protecting human subjects.
- That the biomaterials or any products derived from them will not be commercialized.
- That the biomaterials will not be distributed to a third party (that the researcher will not “share” with a colleague) without authorization by the Coriell Institute for Medical Research as agent for the National Institute of General Medical Sciences.
The Karitiana Indians are not satisfied and along with other Amerindian groups, they claim that selling or using their DNA in unapproved ways is biopiracy. For example, many indigenous groups have expressed their distrust of the National Geographic’s Genographic Project, including the Maori of New Zealand and Alaska natives who want National Geographic to stop â€œsucking indigenous blood.â€
The United Nations Permanent Forum on Indigenous Issues recommended the halt of The Genographic Project in May 2006. The Project is practically at a standstill anyway since almost every federally recognized tribe in North America is refusing to participate. Clearly, scientists and others asking indigenous populations to donate biological samples need to do a better of job of communicating the overarching goals and benefits such studies can achieve.
Judith Greenberg, director of genetics and developmental biology at the National Institute of General Medical Sciences:
This is sort of a balancing act. We don’t want to do something that makes a whole tribe or people unhappy or angry. On the other hand, the scientific community is using these samples, which were accepted and maintained under perfectly legitimate procedures, for the benefit of mankind.
Legitimate for us maybe, but not necessarily for the Karitiana people.
How do you think indigenous populations should be compensated for their participation in genetic studies?
*(Does this answer your question, Berci?)
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