The problem of whether women should be involved in drug research is a question of who can assume risk and who is responsible for disseminating what specific kinds of information. The problem tends to be framed as one that juxtaposes the health of women and fetuses and sets their health as in opposition. That opposition, coupled with the inherent uncertainty in testing drugs, provides for a complex set of issues surrounding consent and access to information.
In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and several Arizona State University professors after discovering that the scientists had used blood samples from members of the tribe for research on type 2 diabetes in unrelated genetic studies. The study participants were not aware the researchers were using their samples in the study of highly taboo topics in Havasupai culture, such as schizophrenia, ethnic migration, and population inbreeding. The Havasupai Tribe alleged that the collection of samples constituted a violation of informed consent, or an individual’s agreement to participate after receiving an accurate and comprehensive explanation of the intended usage of their genetic material. The lawsuit, Havasupai Tribe v. Arizona State University Board of Regents, reached a settlement in April 2010 that included monetary compensation from Arizona State University and the return of the samples to the Havasupai community. Although the case did not set an official legal precedent, it sparked discourse regarding informed consent and ethical research practices when conducting genetic research with Native American communities and other vulnerable populations.