Drs. Thomas and Quinn are Guest Editors of AJPH Issue on Ethics of Research with Racial and Ethnic Minorities
Remarkable improvements in the quality of life, prevention and treatment of disease have been made possible through advancements in biomedical research, including clinical trials involving human subjects. The November 2013 issue of the American Journal of Public Health focuses on the ethics of human subjects research and the critical need for researchers to do better in their efforts to include women and racial and ethnic minority populations into the research enterprise. University of Maryland Center for Health Equity directors Dr. Stephen B. Thomas and Dr. Sandra C. Quinn are guest editors of this theme issue, focusing on The Ethics of Human Subjects Research on Minorities.
Research abuses in the past have contributed to fear and mistrust among minority populations, resulting in regulatory measures designed to protect them due to their real or perceived "vulnerability." But, what makes a research subject vulnerable? Is it the color of their skin? The language they speak? Their socio-economic condition or physical abilities? Increasingly, groups seen as "vulnerable" are demanding access to the benefits of research, and investigators are making progress in successfully including women and minorities. The question of vulnerability is just one of many ethically relevant concepts raised in the American Journal of Public Health issue (Nov. 2013).
The theme issue is made possible by a grant to the University of Maryland Center for Health Equity from the NIH-National Institute on Minority Health and Health Disparities for their project Building Trust Between Minorities and Researchers, which provides online training modules for researchers and community members on the ethical engagement of minority populations in research. The peer-reviewed papers assembled for the AJPH issue explore the complexities involved in the ethical inclusion of minority populations in research, and the challenges of creating a national research enterprise that is both protective and inclusive of vulnerable groups. In addition, an interview with Dr. John Ruffin, director of the National Institute on Minority Health and Health Disparities, is available in audio podcast form. Drs. Thomas and Quinn talked with Dr. Ruffin about the importance of including minorities in research, and his insights on the changing demographics of the US population, new challenges for researchers, and the value of community participation.
Read the commentary Building Trust for Engagement of Minorities in Human Subjects Research: Is the Glass Half Full, Half Empty, or the Wrong Size? by Sandra C. Quinn, PhD, Guest Editor, Nancy E. Kass, SCD, Guest Editor, and Stephen B. Thomas, PhD, Guest Editor.
The print version will be available in December 2013.