Minorities have been historically underrepresented in healthcare research studies. Addressing this issue includes addressing minority concerns about their participation.
Minorities, especially Black Americans, have had a complicated relationship with health research studies. The Tuskegee Airmen experiment enrolled African American men under false pretenses in a study about the effects of untreated syphilis and caused significant medical harm to the participants. Although this unethical experiment concluded in 1972, Black and minority attitudes regarding experimental participation continue to be negatively affected.
The members of the Multiple Sclerosis (MS) Minority Research Engagement Partnership Network sought to retrieve information using a Web-based survey. This survey gathered information about the research impressions, concerns, and study attribute preferences among people with MS. Of the 2599 participants with MS, 2111 were non-Hispanic White Americans, 215 were Black Americans, and 188 were Hispanic. Women represented 78.62% of the participants, and men represented 20.77%. Study attributes such as potential harms to health and confusing study information were identified consistently as dislikes for the participants. A significant concern for all participants, regardless of race, was not being fully informed about the research.
Black and Hispanic participants had more concerns about being used by the research team than White and non-Hispanic participants. Hispanics expressed doubts about the research posing a risk to their legal status. Both groups showed a preference for research studies that benefited their own racial/ethnic group. The study results found that minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status.
To ensure equitable healthcare minorities must be included in healthcare research. This may require going beyond traditional research recruitment methods in order to obtain a diverse population sample. Researchers should make an additional effort to address identified minority concerns. Research recruiters also need to communicate better with their minority participants about the benefits of the studies for underrepresented communities.
Pimentel Maldonado, D. A., Moreno, A., Williams, M. J., Amezcua, L., Feliciano, S., Williams, A., Machemer, D., Livingston, T., LaRocque, M., Glim, M., & Schmidt, H. (2021). Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups. Int J MS Care, 23(4), 170-177. https://doi.org/10.7224/1537-2073.2019-131