Online Program

Stakeholder perceptions of genetic research on racial/ethnic minority groups and ethical responsibilities of volunteers, investigators, and editors

Tuesday, November 5, 2013

Emmanuel Ngui, DrPH, MSc, Joseph J. Zilber School of Public Health,, University of Wisconsin-Milwaukee, Milwaukee, WI
Teddy Warner, PhD, Family and Community Medicine, University of New Mexico, Albuquerque
Laura Roberts, M.D., M.A., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford
Context. Genetic research involving racial/ethnic minority populations has unique social, legal, and ethical implications for various stakeholders including participants, investigators, and institutional review boards. Objective. To examine community and professional stakeholder perspectives on the ethical acceptability of participating and reporting of genetic research focused on racial/ethnic minority groups. Method: Analysis of multisite survey data using repeated measures MANOVA to examine stakeholder views regarding ethical issues related to psychiatric genetic research. Participants included: 1) Racial/ethnic community members (n=182) who reported they had (a) serious mental illness (n=71), (b) close family member with serious mental illness (n=54), or (c) neither of these experiences (n=57); 2) psychiatric genetic researchers (n=183); and 3) national sample of IRB chairs (n=203). Results. All stakeholder groups perceived participation in genetic studies focused on racial/ethnic minority groups to be highly ethically acceptable and agreed that it is ethically acceptable for minority individuals to decline to participate in such studies if concerned about possible discrimination or stigmatization. Stakeholders disagreed considerably on the ethical acceptability of researchers or journal editors similarly concerned choosing not to publish genetic study results focused on racial/ethnic minority groups. Conclusion. Community and professional stakeholders support participation in research to explore scientific genetic issues of specific relevance to minority groups but recognize that the results of such studies may contribute to further discrimination or stigmatization. Stakeholders are not aligned in their perspectives of the professional responsibilities of investigators and editors in balancing the ethical issues intrinsic to advancing science and minimizing harm to potentially vulnerable populations.

Learning Areas:

Diversity and culture
Ethics, professional and legal requirements
Planning of health education strategies, interventions, and programs
Public health or related research
Social and behavioral sciences

Learning Objectives:
Discuss perspectives of different stakeholders on ethical acceptability of genetic research focused on minority groups Discuss perspectives of different stakeholders on ethical acceptability of editors declining to publish genetic findings out of concerns for potential discrimination or stigmatization of minority groups

Keyword(s): Ethics, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been a co-investigator of the project and participated in design, analyses and writing of the manuscript
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.