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标题：Awareness of the Tuskegee Syphilis Study and the US Presidential Apology and Their Influence on Minority Participation in Biomedical Research
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作者：Ralph V. Katz ; S. Stephen Kegeles ; Nancy R. Kressin 等
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2008
卷号：98
期号：6
页码：1137-1142
DOI：10.2105/AJPH.2006.100131
语种：English
出版社：American Public Health Association
摘要：Objectives. We compared the influence of awareness of the Tuskegee Syphilis Study and the presidential apology for that study on the willingness of Blacks, non-Hispanic Whites, and Hispanics to participate in biomedical research. Methods. The Tuskegee Legacy Project Questionnaire was administered to 1133 adults in 4 US cities. This 60-item questionnaire addressed issues related to the recruitment of minorities into biomedical studies. Results. Adjusted multivariate analysis showed that, compared with Whites, Blacks were nearly 4 times as likely to have heard of the Tuskegee Syphilis Study, more than twice as likely to have correctly named Clinton as the president who made the apology, and 2 to 3 times more likely to have been willing to participate in biomedical studies despite having heard about the Tuskegee Syphilis Study (odds ratio [OR]=2.9; 95% confidence interval [CI]=1.4, 6.2) or the presidential apology (OR=2.3; 95% CI=1.4, 3.9). Conclusions. These marked differences likely reflect the cultural reality in the Black community, which has been accustomed to increased risks in many activities. For Whites, this type of information may have been more shocking and at odds with their expectations and, thus, led to a stronger negative impact. The US Public Health Service Tuskegee Syphilis Study (1932–1972) is arguably the most infamous biomedical research study in US history. 1 ^– 5 This study enrolled 399 Black sharecroppers in Macon County, Ala, and studied the effects of not treating their syphilis. 6 ^, 7 There is widespread belief that the “legacy” of this unethical study is that the Black community has a greater reluctance to participate in clinical research studies because of the abuses foisted on the participants in that study. Although a considerable amount has been written about the long-lasting effects of the Tuskegee Syphilis Study on the Black community, most of this work has been from a legal, historical, ethical, or access to health care perspective. 8 ^– 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 ^– 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. 30 For our study, we used data from a telephone survey of adults in 4 US cities that used the Tuskegee Legacy Project (TLP) Questionnaire. 30 We sought to compare racial/ethnic differences among Blacks, Whites, and Hispanics, in the level of awareness of the Tuskegee Syphilis Study and the US presidential apology made to the Black community, and to compare the self-reported influence among Blacks, Whites, and Hispanics of both the study and the presidential apology on the willingness to participate in biomedical studies.