“When you believe in something…you have to be willing to step out there and use yourself as an example,” says Geraldine Bradshaw, principal of the Institute for the Development of Young Leaders2. Mrs. Bradshaw is among one of four women from different backgrounds interviewed to share their thoughts on why Black women should participate in research studies. Mrs. Bradshaw is a participant in the Novavax COVID-19 vaccine clinical trial, led by UNC School of Medicine’s Infectious Disease Division. She further states, “We can’t stay in the present. We have to make sure that as a group, as a race, that our children and our children’s children have the greatest opportunity. So, you have to be willing to step out there so that our future for our children is guaranteed.”2
Mrs. Bradshaw is right in that minority groups far too often go underrepresented in research trials. For instance, Blacks and Latinos make up 30% of the U.S. population, but account for 6% of all participants in federally funded clinical trials1. This creates public health problems, like worsening existing health disparities, if those most affected by a disease continue to be underrepresented. Furthermore, it was estimated that reducing racial and ethnic health disparities would save the United States over $1.2 trillion in medical costs between 2003 and 2006, not to mention the missed scientific opportunity to fully understand all factors contributing to diseases1.
Alicia Diggs, Office of Community Engagement manager for the Center for AIDS research (CFAR) and participant in the Women’s Interagency HIV study (WIHS), further reflects on why Black women should participate in research studies. She states, “Everybody’s culture is different, particularly people of color. Because we are disproportionately affected by so many different issues, it’s time for us to take a stand and it’s time for scientists and researchers and doctors to hear our voices and not assume what needs to be done for us.”2
Mrs. Diggs emphasizes the point that underrepresentation leads to doctors and researchers making assumptions about minority populations, and unseen racial biases can permeate medical decision-making. These subtle biases can also lead to exclusion. Researchers may be less likely to mention studies to patients who they assume would not want to participate anyway1. Furthermore, there are several possible reasons why minorities are underrepresented in research studies. Cultural and linguistic differences as well as financial and time constraints may hinder minority participation1. Researchers may also be insufficiently trained to implement studies in minority communities or lack the incentive to recruit members of these communities1.
Ada Adimore, MD, MPH, and professor of medicine in the Division of Infectious Diseases, UNC School of Medicine, adds to the conversation by stating, “If we as Black people are going to reap the benefits of these advances and not be left behind, we need to make sure that the researchers developing these new treatments have access to information from Black participants to increase the likelihood that these new treatments benefit us.”2
Dr. Adimore emphasizes the importance of having data from Black participants, and research shows that many individuals in minority groups are as willing to participate in research studies as other groups when given the opportunity1. Determining the diverse environmental and health challenges faced by minority groups is a way to help target interventions, and developing effective interventions means asking culturally relevant questions1.
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- Konkel, L. (2015). Racial and Ethnic Disparities in Research Studies: The Challenge of Creating More Diverse Cohorts. Environmental Health Prospectives, 123(12): A297-A302. doi: 10.1289/ehp.123-A297
- Phillips, B. (2021, March 17). Why should black women participate in research? UNC Health and School of Medicine. Retrieved March 25, 2021, from https://news.unchealthcare.org/2021/03/why-should-black-women-participate-in-research/