The Havasupai Indians, Genetic Research and the Problem of Informed Consent
posted by Gaia Bernstein
Researchers can gain significant genetic information by studying indigenous and preferably isolated populations. Although both researchers and indigenous populations can gain from this collaboration, the two groups often do not see eye to eye. This was the case of the collaboration between the Havasupai Indians and researchers from Arizona State University, which resulted in a long legal fight. The Havasupai Indians were suffering from high prevalence of diabetes and agreed to give their blood samples for genetic research on Diabetes. The members of the tribe were infuriated when they found out later that their blood samples were used for other purposes, among them genetic research on schizophrenia.
The New York Times reported yesterday that this conflict resulted in a settlement in which Arizona State University agreed to pay $700,000 to the tribe members and also return the blood samples. The Havasupai Indians’ main legal claim was of violation of informed consent. Informed consent requires that patients and research subjects receive full information that will enable them to decide whether to adopt a certain medical treatment plan or participate in research. Here, the Havasupai Indians argued that the informed consent principle was violated because they were told that their blood samples will be used for one purpose while, in fact, they were used for another.
No doubt, the Havasupai Indians informed consent argument resulted in their victorious settlement. But, the harder question is whether informed consent principle can be feasibly applied in the area of genetics. Genetic information is not just individual information it also provides information about groups and families. For example, assume there is a tribe in which some members agree to participate in genetic research investigating Manic Depression. Other members of the tribe refuse because they are concerned that a result showing that there is a prevalent genetic mutation for Manic Depression among them could stigmatize them and even lead to discrimination against the tribe. The researchers collect samples only from the members of the group who agree to the research. But, the results still provide genetic information on all members of the tribe even those who refused to participate because of their genetic connection to those who participated.
The result in the Havasupai settlement cannot be seen then as a victory for the principle of informed consent in the area of genetics. Restricting genetic researchers to use of samples only for the purpose for which they were collected only partly resolves the informed consent problem. The group nature of genetic information makes the application of informed consent to genetic research much more complicated than that.