In June 2000, major headlines announced the mapping of the human genome. This meant good news for the government agencies as well as for private corporations involved in the genome mapping venture and their shareholders. Brett Lee Shelton, Director of Policy and Research of the Indigenous Peoples Council on Biocolonialism (USA) argues that scientists will now turn their attention to the search for human genetic variation which includes the collection and study of the DNA of indigenous peoples.

Genetic variation research has caused problems for indigenous populations around the world.Basic human rights protocols such as informed consent are often neglected in the field. In addition, research that targets specific populations can impact those groups, although there are no standard protocols to protect group interests.

Indigenous peoples have been thrust into the forefront of the new ‘gold rush’ for human genetic variation. Instead of land or natural resources, this time the commodity being sought from indigenous people is the unique genetic heritage flowing in their blood.

The genomics industry is really seeking genetic variations linked to diseases and other traits. The industry hopes that these variations can be translated, by obtaining patents on the variations, into profitable new products. For example, when a variation was thought to be linked to breast cancer, the variation was patented and a test to detect that variation devised and marketed.
The rush to obtain and patent such variations creates many problems for indigenous peoples. First, a high demand for unique indigenous genetic samples has resulted in researchers frequently employing less than scrupulous means to obtain them. The mandate of obtaining fully informed consent before taking samples from individuals is sometimes ignored; tribal governments frequently are not consulted prior to designing and funding studies targeting tribal members as subjects, even though the tribe will be identified in the research findings; DNA may be patented for commercial uses without the tribal or individual subject’s permission or knowledge. But there are virtually no legal protections to invoke when ethical violations occur.

A particularly common practice involving indigenous genetic samples is widespread secondary use of the samples. Once a sample is taken, it can be preserved for later uses and for a host of other studies, unrelated to the original use and without the donors’ knowledge. Frequent culprits in such secondary uses are evolutionary population geneticists interested in studying relationships between different populations and migrations of populations over time. Indigenous peoples are the primary subjects for scientists conducting this type of study. However, it is not clear how such studies benefit the subjects of the research, as indigenous nations already have accounts of where they come from and who their closest relations are. In addition to violating informed consent standards, such research is also unlikely provide any benefit to the subjects of the research.

Claims by some geneticists that they can identify who is ‘Native American’ in genetic terms are also causing problems among Native Americans. Recently, in Vermont (USA) state legislation was proposed that would require genetic testing to determine who is Native American. In reality, there is no unique ‘Native American gene’. At best, genetics could show if two people are likely to be related to one another. It certainly cannot show whether one is culturally affiliated with a Native American tribe. Even if it were possible, such a genetic approach is an affront to tribal sovereignty. Traditionally it is the right of a tribe as a sovereign nation to determine their own members.
The level of awareness among indigenous peoples of genetic research and its impacts on our communities and environments is rising. The prominence of genetics in the recent headlines helps to increase this, although community education is necessary to overcome the press reports’ gushing optimism for the promises of genetics in curing the world’s woes. Although indigenous people are at the forefront of this new technology, their communities are only just beginning to realize what this means. Tribal governments are taking protective measures at the tribal and the federal policy levels, while individuals are taking their own steps, from educating community members to working for protective tribal and federal policies.
Brett Lee Shelton