Awareness and Knowledge of the U.S. Public Health Service Syphilis Study at Tuskegee: Implications for Biomedical Research

Abstract

The purpose of this review was to collect and interpret the findings of all published qualitative or quantitative research that assessed African Americans' 1) general awareness and/or specific knowledge of the U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee, and 2) attitudes towards and/or willingness to participate in biomedical research. An exhaustive review of the literature produced eight articles that fit the aforementioned selection criteria. All articles that assessed both awareness and knowledge found that familiarity with the USPHS Syphilis Study at Tuskegee did not necessarily ensure accurate knowledge of it Four studies also found that awareness of the USPHS Syphilis Study at Tuskegee did not relate to willingness to participate in biomedical research. In addition to awareness and knowledge of the USPHS Syphilis Study at Tuskegee, published studies suggest that a broad, array of structural and sociocultural factors influence minorities' willingness to participate in biomedical studies. KeywordsMinority groups; Tuskegee Syphilis Study; research subjects; bioethics; biomedical research Racial and ethnic minority groups historically have been underrepresented and exploited in biomedical research. 1,2 Years after the National Institutes of Health (NIH) Revitalization Act of 1993, mandating the inclusion of women and minorities in clinical trials, minorities continue to be underrepresented in some types of biomedical/clinical research, 3-7 Such disproportionate representation can undoubtedly limit the reliability, validity, and general inability of research findings. 8-12 In addition, the benefits of research may not reach the most vulnerable groups.The U.S. Public Health Service Syphilis Study at Tuskegee (USPHS Syphilis Study at Tuskegee), commonly referred to as the Tuskegee Syphilis Study, is often identified as a barrier to participation in biomedical research, particularly within the African American community. 13-15 According to Gamble,16 The purpose of this review was to collect and interpret the findings of all published qualitative or quantitative research studies that assessed African Americans' attitudes towards and/or willingness to participate in biomedical research, as well as their general awareness and/or specific knowledge of the USPHS Syphilis Study at Tuskegee, To the authors' best knowledge, this is the first review of the literature to be conducted on the effect of awareness and knowledge of the USPHS Syphilis Study at Tuskegee on biomedical research participation. Box 1. SYNOPSIS OF THE U.S. PUBLIC HEALTH SERVICE SYPHILIS STUDY AT TUSKEGEE1932 Tuskegee Study of untreated syphilis began; project involved 399 men with syphilis and 201 without. The men were told they were being treated for "bad blood," Dr. Dibble and Nurse Rivers, two African American health professionals, are involved in recruiting and retaining the men in the study.1936 Researchers request that local physicians withhold treatment from study subjects. In addition, the decision is made to follow t...

Differences in the Patterns of Health Care System Distrust Between Blacks and Whites

“…Addressing the legacy of Tuskegee is often suggested as a method for reducing concerns about experimentation among blacks; however, current studies suggest that knowledge of Tuskegee is relatively low and not correlated with distrust or willingness to participate in research. 55,56 Educational and policy efforts targeting concerns and ethical issues with current biomedical research may be a more effective intervention strategy than targeting concerns about Tuskegee. Addressing the concern about lying to make money may require both fundamental change in current models of health care financing and leadership, as well as focused strategies to educate and inform patients about these issues.…”

Awareness of the Tuskegee Syphilis Study and the US Presidential Apology and Their Influence on Minority Participation in Biomedical Research

“…No ready explanation for this observation is provided by demographic differences (such as age, gender, education, or income) between our study population and those previous studies. Although the professional literature related to health care in the United States is replete with articles that refer to the impact and assumed legacy of the Tuskegee Syphilis Study, [1][2][3]6,[13][14][15][16][17][18][19][20][21][22][23][24][28][29][30] perhaps the most unusual measure of the depth of cultural influence of this legacy is documented by its recent appearance as the core theme of a Marvel comic book 7-issue series: "Truth: Red, White and Black," written in 2003 as a presequel to the Captain America series. In this fictional presequel series, research abuses abound in experiments done on a Black military unit.…”

“…[8][9][10][11][12][13][14][15][16][17][18][19][20] Surprisingly few research articles have directly examined whether any differential participation of Blacks or other minorities in biomedical studies compared with participation of Whites was because of the legacy of the Tuskegee Syphilis Study or because of other factors. [21][22][23][24][25][26][27][28] A recent literature review noted that only 5 of the published studies to date have presented quantified data that compared Black with White participation and the relation to the Tuskegee Syphilis Study, 29 and most of them only used a single question on willingness to participate as their measure of this complex decison. 30 A recent study used a series of questions to create 2 validated scales to measure willingness to participate and found that Blacks self-reported that despite having a higher fear of participation, they were just as likely as Whites to participate in biomedical research.…”

Ethics and regulatory aspects in medical research

“…The report identifies three guiding principles for research: respect for persons, beneficence, and justice [8]. A recently published review demonstrated the current validity of ethical issues in medical research [7]. Familiarity with the Syphilis Study at Tuskegee does not automatically ensure accurate knowledge of it and awareness of it does not necessarily imply willingness to participate in biomedical research.…”