1.Washington University School of Medicine,USA;2.Boston College,USA;3.University of Miami School of Medicine,USA;4.Association for Practical and Professional Ethics,Bloomington,USA
Abstract:
This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers’ responsibilities to the community as a whole and to individual subjects; of the impact of the researcher’s findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored.
