A recent surge of research universities and human subjects research funding in the Arab world raises concerns about applied research ethics and oversight. In-depth interviews conducted with 52 researchers in Lebanon and Qatar about their research conduct and the problems they face while conducting it indicate that although researchers admit to the added value of institutional review board (IRB) functions, the researchers have several complaints, such as rigid and contextually insensitive requirements, delays, and inadequate resources at IRBs, and a lack of outreach and effective communication with researchers. The study discusses these challenges pointing to the need for socioculturally adaptive regulations and forms and strengthening outreach and communication between IRBs and their users to improve ethical practices. Implications for future research are also presented.
Background: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical.Methods: A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics.Results: One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty.Conclusions: Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.Ethn Dis. 2020;30(Suppl 1):137-148; doi:10.18865/ed.30.S1.137
