The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research

The broad goal of the Tuskegee Legacy Project (TLP) study was to address, and understand, a range of issues related to the recruitment and retention of Blacks and other minorities in biomedical research studies. The specific aim of this analysis was to compare the self-reported willingness of Blacks, Hispanics, and Whites to participate as research subjects in biomedical studies, as measured by the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale. The Tuskegee Legacy Project Questionnaire, a 60 item instrument, was administered to 1,133 adult Blacks, Hispanics, and non-Hispanic Whites in 4 U.S. cities. The findings revealed no difference in self-reported willingness to participate in biomedical research, as measured by the LOP Scale, between Blacks, Hispanics, and Whites, despite Blacks being 1.8 times as likely as Whites to have a higher fear of participation in biomedical research on the GPFF Scale.

[1]  D. Campbell,et al.  Convergent and discriminant validation by the multitrait-multimethod matrix. , 1959, Psychological bulletin.

[2]  W J Curran,et al.  The tuskegee syphilis study. , 1973, The New England journal of medicine.

[3]  T. Benedek The 'Tuskegee Study' of syphilis: analysis of moral versus methodologic aspects. , 1978, Journal of chronic diseases.

[4]  Bernard Challenor,et al.  Bad Blood: The Tuskegee Syphilis Experiment , 1982 .

[5]  D. Hunninghake,et al.  Recruitment experience in clinical trials: literature summary and annotated bibliography. , 1987, Controlled clinical trials.

[6]  John E. Ware,et al.  User's Guide for the Multitrait Analysis Program (MAP) , 1988 .

[7]  Ron D. Hays,et al.  Beyond internal consistency reliability: Rationale and user’s guide for Multitrait Analysis Program on the microcomputer , 1990 .

[8]  Stephen B. Thomas,et al.  The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community. , 1991, American journal of public health.

[9]  Twenty Years After : The Legacy of the Tuskegee Syphilis Study , 1992 .

[10]  A. Caplan When Evil Intrudes , 1992 .

[11]  Twenty years after. The legacy of the Tuskegee Syphilis Study. When evil intrudes. , 1992, The Hastings Center report.

[12]  V. Gamble A legacy of distrust: African Americans and medical research. , 1993, American journal of preventive medicine.

[13]  G. Swanson,et al.  Recruiting minorities into clinical trials: toward a participant-friendly system. , 1995, Journal of the National Cancer Institute.

[14]  V. Gamble The Tuskegee Syphilis Study and women's health. , 1997, Journal of the American Medical Women's Association.

[15]  J. Torner,et al.  Why are African Americans under-represented in medical research studies? Impediments to participation. , 1997, Ethnicity & health.

[16]  Gamble Vn The Tuskegee Syphilis Study and women's health. , 1997 .

[17]  R. Maisiak,et al.  Participation in Health Education, Health Promotion, and Health Research by African Americans: Effects of the Tuskegee Syphilis Experiment , 1997 .

[18]  A. Fairchild,et al.  Uses and Abuses of Tuskegee , 1999, Science.

[19]  S. Quinn,et al.  Factors Affecting African‐American Participation in AIDS Research , 2000, Journal of acquired immune deficiency syndromes.

[20]  M. Fouad,et al.  African-American attitudes regarding cancer clinical trials and research studies: results from focus group methodology. , 2000, Ethnicity & disease.

[21]  V. Shavers,et al.  Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. , 2000, Journal of the National Medical Association.

[22]  N. Kressin,et al.  Racial disparities in participation in biomedical research. , 2000, Journal of the National Medical Association.

[23]  Michael A. Flannery,et al.  Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study , 2001 .

[24]  S. Quinn,et al.  African Americans' views on research and the Tuskegee Syphilis Study. , 2001, Social science & medicine.

[25]  C. Manfredi,et al.  Factors Influencing Medical Information Seeking Among African American Cancer Patients , 2002, Journal of health communication.

[26]  D. Pressel Nuremberg and Tuskegee: lessons for contemporary American medicine. , 2003, Journal of the National Medical Association.

[27]  H. Krumholz,et al.  Race, ethnic group, and clinical research , 2003, BMJ : British Medical Journal.

[28]  R. Katz,et al.  The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits. , 2003, Dental clinics of North America.

[29]  Neil R. Powe,et al.  Race and trust in the health care system. , 2003 .

[30]  M. Topçu,et al.  Willingness to participate in clinical treatment research among older African Americans and Whites. , 2003, The Gerontologist.

[31]  N. Powe,et al.  Race and Trust in the Health Care System , 2003, Public health reports.

[32]  G. Corbie-Smith Minority recruitment and participation in health research. , 2004, North Carolina medical journal.

[33]  B. Howard,et al.  Special populations recruitment for the Women's Health Initiative: successes and limitations. , 2004, Controlled clinical trials.

[34]  B. Bates,et al.  The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study. , 2004, Journal of the National Medical Association.

[35]  R. White Misinformation and misbeliefs in the Tuskegee Study of Untreated Syphilis fuel mistrust in the healthcare system. , 2005, Journal of the National Medical Association.

[36]  D. Brandon,et al.  The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care? , 2005, Journal of the National Medical Association.

[37]  S. Reverby,et al.  Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study , 2005, Nursing History Review.

[38]  E. Emanuel,et al.  Are Racial and Ethnic Minorities Less Willing to Participate in Health Research? , 2005, PLoS medicine.

[39]  Giselle Corbie-Smith,et al.  Attitudes and beliefs of african americans toward participation in medical research , 1999, Journal of General Internal Medicine.