Beyond Tuskegee: A contemporary qualitative assessment of barriers to research participation among Black women

Abstract

Background

Health care inequities have partially contributed to the existing racial gaps in health. Despite having lower incidence rates of breast cancer, Black women have a 41% higher mortality rate than White women. Black individuals remain underrepresented in research. Diversity in research is paramount to the improvement of clinical care practices and subgroup-specific guidelines.

Methods

Black women from various community venues across geographic regions of the United States were invited via email, online fliers, social media platforms, and word of mouth to participate in focus groups. Six online focus groups of six to 10 Black women aged 25–65 years (N = 38) with and without a history of cancer were conducted with an in-depth semistructured discussion guide.

Results

Most participants were college educated (32 of 38; 84.2%), aged 50 years or older (31 of 38; 81.6%), and had an annual income of $50,000 or more (26 of 38; 68.4%). Several barriers to research participation were identified. They included a lack of empathy and respect in health care settings, apprehension regarding the sharing of personal information, mistrust of medical research, and logistical/technical barriers. Alternatively, building individual and community trust and communicating the value of conducting research beneficial to the Black community were viewed as facilitators to research participation.

Conclusions

Successful engagement of Black women in research requires the acknowledgment and consideration of the numerous barriers that affect their ability to participate. Black women are more inclined to participate in research when the research team is knowledgeable, has experience within their communities, and engages trusted community partners. Additionally, the research must be meaningful and impactful to future generations of Black women.