Autonomous Individuals or Self-Determined Communities? The Changing Ethics of Research among Native Americans

Abstract

Ethnographic and biological research among tribal communities demands that a researcher successfully navigate not only the social environment but also the political, legal, and biomedical perspectives that compete in today's ethics battleground. Health researchers are, therefore, increasingly drawn into the complex arenas of tribal identity, self-determination, and governance. This brief discussion reflects upon almost a decade of research among indigenous groups in the American Southwest, spanning some of the region's most hostile and unwelcoming years toward outsiders since the Pueblo Revolt. I focus upon the concept in biomedical ethics of individual autonomy, a powerful but inadequate concept for treatment of tribal decision-making and community self-determination. Incompatible with culture mores of strong family, community, and group decision-making, the principle of autonomy serves as an acculturative agent within medical research and treatment. Alternative approaches to consent, and to ethics more broadly, are called for.