**For Blog period 3**
Two very similar cases were mentioned in our reading for 3/18: that of the Havasupai Indians and that of the Nuu chah nulth Nation (Beauchamp and Childress 187-8; Thomas et al. 289-91). I will be focusing on the former case.
Background
The Havasupai Indians live in the Grand Canyon, and several scientists at Arizona State University obtained consent from about 100 representatives of the Havasupai in order to “study the causes of behavioral/medical disorders” using the Havasupai’s DNA samples (Beauchamp and Childress 187). Whereas the Havasupai understood this as consent to conduct diabetes treatment, the scientists took it as a license to conduct various types of genetic research, including research on schizophrenia and inbreeding, and the results were made available to the public. The Havasupai attested that they never consented to research on their samples aside from the diabetes research, and they sued the university and won the lawsuit (Beauchamp and Childress 187-8).
The Dilemma
The dilemma in this case is whether the scientists had obtained the proper consent to conduct additional research on the DNA samples of the Havasupai, aside from the research on diabetes, or if additional measures should have been taken to obtain proper consent. This case involves the principles of autonomy, nonmaleficence, and beneficence. The scientists made an effort to respect the autonomy of the Havasupai by having representatives sign a consent form. The form was made basic to accommodate the limited English proficiency of the tribe members, but it was also made broad (Beauchamp and Childress 187). The broadness of the consent form and a possible lack of effective communication between the scientists and the Havasupai representatives contributed to the harm of the tribe members. There is no evidence that the scientists’ goal was to expose shameful or harmful aspects of the Havasupai to the general public. By publishing the results, the scientists likely thought they were acting in beneficence to the general public by looking at the effects of inbreeding and at schizophrenia, as research is necessary in making progress in the remedy of certain conditions. However, when findings were made beyond the research on diabetes, harm inadvertently resulted to the Havasupai.
Reflection
The scientists acted extremely irresponsibly in this case. They did conduct the diabetes research that the Havasupai expected to be conducted and they likely conducted the research on mental illness to make progress in the field and to help those suffering from such conditions. However, the scientists took advantage of the poor level of understanding of the Havasupai and clearly did not make sure that the representatives understood exactly what they were consenting to. Although the Havasupai did legally consent to the “study [of] the causes of behavioral/medical disorders,” they obviously were not clear on what that entailed, and it is the scientists’ ethical responsibility to ensure proper understanding of the subjects of the implications of their consent (Beauchamp and Childress 187).
It would be virtually impossible to predict all possible consequences of the research, but a more comprehensive understanding would aid in the Havasupai’s evaluating the benefits and costs and making an informed decision. Instead of writing up a vague consent form and giving it to the representatives to sign, the scientists should have explained in detail, both verbally and in writing, what they were planning to do and make it clear that they would likely be looking at factors beyond diabetes. To ensure proper understanding, the subjects should be asked to repeat what they are consenting to in their own words. If the subjects make it clear that they only want the diabetes research to be conducted, their autonomous decision is to be respected. The benefit to society of medical research is crucial, but it should not be done at the expense of the autonomy of and potential harm to anyone.
Works Cited
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009. 187-8. Print.
Thomas, John E., Wilfrid J. Waluchow, Elisabeth Gedge. Well and Good. a Case Study Approach to Health Care Ethics. 4th ed. Peterborough, Ontario: Broadview, 2014. 289-91. Print.