Ethical Responsibilities and Perceptions of Stakeholders of Genetic Research Involving Racial/Ethnic Minority Participants

摘要

Background: Genetic research involving racial/ethnic populations has novel ethical implications for various stakeholders, but ethical acceptability among stakeholders regarding such research is not clear. Methods: As part of a multifaceted National Institute of Mental Health (NIMH)/National Human Genome Research Institute (NHGRI) funded survey, we used repeated-measures factorial multivariate analysis of variance (MANOVA) to compare the perspectives of institutional review board (IRB) chairs (n = 203), investigators (n = 183), and community members (n = 192) on the ethical acceptability of participating in and reporting of psychiatric genetic research focused on racial/ethnic minority groups. Stakeholder views were assessed with two sets of three questions. Results: All stakeholder groups perceived participation in genetic studies focused on racial/ethnic groups as ethically acceptable and endorsed as ethical any decisions by racial/ethnic minorities to decline to participate in such studies if concerned about possible discrimination/stigmatization based on the study findings. Stakeholders disagreed considerably on the ethical acceptability of researchers or journal editors choosing not to publish genetic study results focused on racial/ethnic minority groups based on potential harm of the study findings. Conclusion: Findings show community and professional stakeholders support participation in genetic research focused on specific racial/ethnic groups but recognize that the results of such studies may contribute to discrimination or stigmatization. Stakeholders differed in their perspectives of investigators and editors in balancing ethical issues intrinsic to advancing science versus minimizing harm to potentially vulnerable populations.