I teach social science research methods and students learn that great care must be taken to prevent harming anyone in the name of research. In fact, if people are involved in a research project on our campus (as opposed to inanimate objects such as films or political speeches) then a review committee oversees the research. This is known as the Institutional Review Board, or just IRB.
Examples abound of researchers who have taken advantage of their “human subjects” with perhaps the most notorious the studies of venereal disease among African American residents of Tuskegee, Alabama. Researchers studied effects of syphilis while withholding life-saving penicillin from some of the subjects. The studies ended in 1972.
American Indians have long been the focus of scientific and pseudo-scientific research, and just this year the Havasupai sued Arizona State University for failing to disclose to tribal members the nature of their experiments. Tribal members were told their blood was being studied to help cure diabetes, but it turns out researchers used the blood samples for many other types of tests unknown to the tribe. It’s no surprise that many Indian tribes look askance at science, having been the subjects of research for decades without reaping any rewards of research.
Some researchers are calling for a new set of ethical parameters when it comes to studying Native American populations, and two are worth noting. The first example comes from the Alaska Native Science Commission (see http://www.nativescience.org/)
The Commission is a clearinghouse for researchers who want to study Native communities and they have successfully reframed the focus so that Native people are not merely subjects, but rather partners in research. The website includes ethical guidelines and protocols, with the first principal noting that: “The community must be involved as a full partner in all aspects of the research. Continuous consultation and collaboration should characterize the partnership.”
The other noteworthy example comes from the work of Devon A. Mihesuah. In her 1998 edited volume, Natives and Academics, Mihesuah urges researchers to make transparent benefits and impacts resulting from their work. In short, such benefits must be shared with the tribes. She notes that “the subjects of research usually receive few, if any, benefits from the lucrative research grants awarded to scholars each year” and calls for a restructuring of Institutional Review Boards (that oversee research) to include full disclosure of benefits to the researcher and the sharing of such benefits with communities. Such recommendations signal a sea change in how Indians have been subjects, rather than partners in science.