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African Americans' views on research and the Tuskegee Syphilis study

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Listed:
  • Freimuth, Vicki S.
  • Quinn, Sandra Crouse
  • Thomas, Stephen B.
  • Cole, Galen
  • Zook, Eric
  • Duncan, Ted

Abstract

The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.

Suggested Citation

  • Freimuth, Vicki S. & Quinn, Sandra Crouse & Thomas, Stephen B. & Cole, Galen & Zook, Eric & Duncan, Ted, 2001. "African Americans' views on research and the Tuskegee Syphilis study," Social Science & Medicine, Elsevier, vol. 52(5), pages 797-808, March.
    • Handle: RePEc:eee:socmed:v:52:y:2001:i:5:p:797-808
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    Cited by:

    1. Michael S Deiner & Lee Worden & Alex Rittel & Sarah F Ackley & Fengchen Liu & Laura Blum & James C Scott & Thomas M Lietman & Travis C Porco, 2017. "Short-term leprosy forecasting from an expert opinion survey," PLOS ONE, Public Library of Science, vol. 12(8), pages 1-13, August.
    2. Donna Antoine-LaVigne & Traci Hayes & Marty Fortenberry & Evidence Ohikhuai & Clifton Addison & Sam Mozee & Dorothy McGill & Mangle L. Shanks & Christopher Roby & Brenda W. Campbell Jenkins & Paul B. , 2023. "Trust and Biomedical Research Engagement of Minority and Under-Represented Communities in Mississippi, USA," IJERPH, MDPI, vol. 20(2), pages 1-12, January.
    3. Kosoko-Lasaki, Omofolasade & Cook, Cynthia T. & O'Brien, Richard & Kissell, Judith & Purtilo, Ruth & Peak, Frank, 2006. "Promoting cultural proficiency in researchers to enhance the recruitment and participation of minority populations in research: Development and refinement of survey instruments," Evaluation and Program Planning, Elsevier, vol. 29(3), pages 227-235, August.
    4. Freimuth, Vicki S. & Jamison, Amelia M. & An, Ji & Hancock, Gregory R. & Quinn, Sandra Crouse, 2017. "Determinants of trust in the flu vaccine for African Americans and Whites," Social Science & Medicine, Elsevier, vol. 193(C), pages 70-79.
    5. Latrice Rollins & Angela Sy & Nicole Crowell & Desiree Rivers & Assia Miller & Pamela Cooper & Debra Teague & Cassandra Jackson & Tabia Henry Akintobi & Elizabeth Ofili, 2018. "Learning and Action in Community Health: Using the Health Belief Model to Assess and Educate African American Community Residents about Participation in Clinical Research," IJERPH, MDPI, vol. 15(9), pages 1-14, August.
    6. Anna Josephson & Melinda Smale, 2021. "What Do you Mean by “Informed Consent”? Ethics in Economic Development Research†," Applied Economic Perspectives and Policy, John Wiley & Sons, vol. 43(4), pages 1305-1329, December.
    7. Barata, Paula C. & Gucciardi, Enza & Ahmad, Farah & Stewart, Donna E., 2006. "Cross-cultural perspectives on research participation and informed consent," Social Science & Medicine, Elsevier, vol. 62(2), pages 479-490, January.

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