Abstract:

This case uses a role play simulation to illustrate ethical implications when research practices violate cultural taboos and norms. In Who Owns Your Story? the Trilanyi - a fictional Native American tribe based on a real community that is not identified or located in the case – is adversely affected by a high prevalence of diabetes. They ask a university professor with whom they have a close relationship to study their tribe, and they agree to give samples of their blood – which they consider sacred – for the study. Tribe members signed a consent form to participate but it was unclear whether they realized that the consent covered the university potentially using their blood for other possible research topics beyond diabetes. Ultimately, the study does not discover that the tribe has a genetic predisposition to diabetes. Years later, however, tribe members learn that their samples had also been used to study topics they considered objectionable. The case is based on true events between the Havasupai tribe and the University of Arizona which ultimately led to a legal suit that was settled out of court. In the case, students are asked to develop and simulate role play negotiations toward an acceptable resolution for all the parties involved. 

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