Increasing black Americans’ participation in clinical trials: a qualitative analysis
DOI:
https://doi.org/10.18203/2349-3259.ijct20262500Keywords:
Clinical trial, Clinical trial recruitment, Research participation, Research diversityAbstract
Background: Black Americans are underrepresented in clinical trials, a disparity that limits the applicability of medical research and perpetuates health inequities. This underrepresentation is particularly urgent given its implications for health outcomes, as it hinders the development of treatments tailored to diseases disproportionately affecting Black populations, such as hypertension, diabetes, and certain cancers. Without equitable representation in clinical trials, advancements in these areas may not fully address the unique needs of Black communities, further exacerbating existing health disparities.
Methods: This qualitative study analyzed data from four focus groups conducted in the summer of 2024 to explore perceptions of clinical trials among Black Americans. Participants, primarily over the age of 40, were recruited from diverse community settings. Deductive content analysis identified themes around knowledge gaps, attitudes, barriers, motivators, and communication strategies for healthcare providers.
Results: Results revealed a general understanding of the purpose of clinical trials. Barriers included mistrust rooted in historical injustices, logistical challenges, and perceived risks, while motivators focused on community benefits, compensation, and ease of participation. Participants emphasized the importance of clear, culturally sensitive communication and suggested leveraging a wide variety of marketing channels and community partnerships.
Conclusions: These findings will guide the development of a social marketing campaign, and a provider training curriculum aimed at increasing clinical trial participation among marginalized communities.
References
Kelsey MD, Patrick-Lake B, Abdulai R, Uli CB, Adam B, Elizabeth C, et al. Inclusion and diversity in clinical trials: Actionable steps to drive lasting change. Contemp Clin Trials. 2022;116:106740.
Schwartz AL, Alsan M, Morris AA, Halpern SD. Why Diverse Clinical Trial Participation Matters. N Engl J Med. 2023;388(14):1252-4.
Ford JG, Howerton MW, Lai GY, Tiffany LG, Shari B, Gibbons MS, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: A systematic review. Cancer. 2008;112(2):228-42.
Anderson R, Popovic A, Davis M, Kovac E. Winning hearts and minds: prostate cancer outreach and clinical trial enrollment in minority men. Transl Cancer Res. 2024;13(11):6430-7.
Craig LS, Sarpong DF, Peacock EM, Theall KP, Williams L, Al-Dahir S, et al. Corrigendum to “Clinical trial participation among underserved communities: Insights from the Louisiana Community Engagement Alliance.” Am J Med Sci. 2025;370(4):407.
Brandt AM. Racism and Research: The Case of the Tuskegee Syphilis Study. Hastings Cent Rep. 1978;8(6):21.
Gray F. The Tuskegee Syphilis Study: The Real Story and Beyond. Vaughan Printing. 1998.
McCallum JM, Arekere DM, Green BL, Katz RV, Rivers BM. Awareness and Knowledge of the U.S. Public Health Service Syphilis Study at Tuskegee: Implications for Biomedical Research. J Health Care Poor Underserved. 2006;17(4):716-33.
Jones JH. Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study. UNC Press Books. 2012.
Thomas SB, Quinn SC. The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community. Am J Public Health. 1991;81(11):1498-505.
Baptiste D, Caviness‐Ashe N, Josiah N, Yvonne CM, Joyell A, Patty RW, et al. Henrietta Lacks and America’s dark history of research involving African Americans. Nurs Open. 2022;9(5):2236-8.
Brandon DT, Isaac LA, LaVeist TA. The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care? J Natl Med Assoc. 2005;97(7):951-6.
Reber L, Griggs Z, Patel MJ, Ruiz E, Tamirisa S, Huan E, et al. “Misled, misinformed, under-informed”: Socio-ecological determinants for rebuilding trust in clinical research. Ethics Med Public Health. 2025;33:101142.
Hebebrand M. Takeda targets clinical disparities in psoriasis research. Dermatol Times. 2025.
Gomez C, Baker K, Eggleston C. Centering Black Voices: Factors Influencing a Cancer Patient’s Decision to Join a Clinical Trial. Int J Radiat Oncol. 2024;120(2):S71-2.
National Institute on Minority Health and Health Disparities. National Institute on Minority Health and Health Disparities; 2017. Available at: https://nimhd.nig.gov/researchFramework. Accessed on 15 June 2026.
Frew PM, Saint-Victor DS, Isaacs MB, Sonnie K, Geeta KS, Jeanne SS, et al. Recruitment and Retention of Pregnant Women into Clinical Research Trials: An Overview of Challenges, Facilitators, and Best Practices. Clin Infect Dis. 2014;59(7):S400-7.
Shavers VL. Racial and Ethnic Disparities in the Receipt of Cancer Treatment. CancerSpectrum Knowl Environ. 2002;94(5):334-57.
Shavers VL, Lynch CF, Burmeister LF. Racial Differences in Factors that Influence the Willingness to Participate in Medical Research Studies. Ann Epidemiol. 2002;12(4):248-56.
Singh Y, Eisenberg MD, Sood N. Factors Associated with Public Trust in Pharmaceutical Manufacturers. JAMA Netw Open. 2023;6(3):e233002.
Alarcón Garavito GA, Gilchrist K, Ciurtin C, Sanjay K, Pinkie C, Nick McN, et al. Enablers and barriers of clinical trial participation in adult patients from minority ethnic groups: a systematic review. Trials. 2025;26(1):65.
Barsha RAA, Assari S, Byiringiro S, Erin DM, Timothy BP, Hailey NM, et al. Motivation to Clinical Trial Participation: Health Information Distrust and Healthcare Access as Explanatory Variables and Gender as Moderator. J Clin Med. 2025;14(2):485.
Alegria M, Sud S, Steinberg BE, Gai N, Siddiqui A. Reporting of Participant Race, Sex, and Socioeconomic Status in Randomized Clinical Trials in General Medical Journals 2015 vs 2019. JAMA Netw Open. 2021;4(5):e2111516.
Downloads
Published
How to Cite
Issue
Section
