Over the last two decades, there has been an ongoing debate on the role that the controversies surrounding the U.S. Public Health Study of Untreated Syphilis in Negro Men has played in HIV/AIDS risk reduction efforts among racial/ethnic minorities, particularly African Americans (Thomas & Quinn, 1991
; Mays, 2011
, Dodor & West, 2011
). To date, a handful of researchers have explored the possible influence of the legacy of the U.S. Public Health Service Syphilis Study at Tuskegee (SST) on African American participation in biomedical research, as measured by both survey questions and focus groups (Freimuth et al., 2001
; Corbie-Smith et al., 1999
; McCallum et al., 2006
; Katz et al., 2009
). Although each study is unique, there are five general questions that underlie the work (Katz et al., 2011
First, are minorities more reluctant to participate in biomedical research than Whites (Thomas et al., 1994
; Durant et al., 2011
)? Some researchers (Brown & Topcu, 2003
; Katz et al., 2006
, Katz et al, 2007
, Wendle, 2006
) have not found support for this assumption, though others have (Bates & Harris, 2004
; Shavers, 2002
). For example, Wendler, Kington, Madans et al. (2005) reported few ethnic/racial differences in research consent rates among over 70,000 individuals. Also, Katz and colleagues reported no appreciable differences among Blacks, Latinos, and Whites in their willingness to participate in biomedical research (Katz et al., 2006
; Katz et al., 2007
). Even in an older sample where many respondents were likely to be aware of the SST, older African Americans were no less likely than older Whites to be willing to participate in clinical research (Brown & Topcu, 2003
). Indeed, the overwhelming majority of respondents, 73% of older African Americans and 78% of older Whites, indicated they were willing to take part in experimental clinical treatment research should they be diagnosed with cancer. Nevertheless, Shaverset al. (2002)
has reported differences between African American and White Detroit area residents in in their willingness to participate in medical research. In sum, the evidence is somewhat equivocal that African Americans are more unwilling to participate in biomedical research.
A second question is whether general awareness of SST affects African Americans’ willingness to participate in biomedical research. Here, a number of studies have found support for this proposition. For example, a study of 179 African American and White residents of the Detroit Metropolitan area observed that general awareness of the Syphilis Study at Tuskegee influenced willingness to participate in biomedical research (Shavers et al., 2000
). Of the 46% of African American and 34% of White respondents who knew of SST, almost half of African Americans (49%) and 17% of Whites reported that they would not be willing to participate in medical research studies in the future. Similarly, Katz et al., 2008
found that general awareness of the Syphilis Study at Tuskegee influenced willingness to participate in biomedical research differently among African Americans and Whites. Among those who knew of the Syphilis Study at Tuskegee, surprisingly, half of African Americans and 70% of Whites reported that they were less likely to participate in research as a result of what they had heard of about the SST. In addition, two qualitative studies (Bates & Harris, 2004
; Scharff 2010
) have reported evidence of a harmful impact of SST. Bates and Harris (2004)
found that African American respondent recruited from the southeastern United States are more suspicious of the medical enterprise and express relative reluctance to participate in biomedical research. However, the authors here concluded that the SST alone was not the only factor creating concern with biomedical research participation. A second qualitative study including 70 African American participants observed that the SST awareness played an influential role in the mistrust of the health care system and, thus, was a barrier to research participation (Scharff 2010
Nevertheless, two other studies did not find a harmful impact of SST awareness of on the willingness of African Americans to participate in biomedical research. Green et al., 2000
conducted a qualitative study in Alabama with only African American participants observing little SST impact on individual participation in clinical cancer research studies. A second qualitative study with over 1,000 respondents in 3 cities, showed no appreciable relationship between the SST awareness and the self-reported likelihood of participating in biomedical studies in the future among African Americans (Katz et al., 2009
Overall, then, the findings here are mixed as well. But a preponderance of studies suggests a possible harmful impact of general SST awareness on the willingness of individuals, both African American and White, to participate in biomedical research.
A third question that arises in the context of the SST studies is whether awareness of the presidential apology for the USPHS Syphilis Study at Tuskegee has had a beneficial impact in reducing mistrust among African Americans. On May 16, 1997, President Bill Clinton made a public apology to the victims and their family members for the Tuskegee Syphilis Experiment. To date, there is only one reported study of which we are aware that has investigated the effects of this apology. Katz et al. 2008
found that awareness of the presidential apology influenced African Americans’ participation in biomedical research presumably by increasing awareness of the SST. The study, which included 1,133 adults in 4 US cities, found that 41% of African Americans and 62% of Whites were less likely to join a biomedical study as a result of awareness of the presidential apology.
A fourth question underlying previous SST studies is whether there is a difference between racial/ethnic minorities and Whites in awareness of the USPHS Syphilis Study at Tuskegee. Several studies have, in fact, observed that racial/ethnic minorities and Whites vary in their general awareness of the Syphilis Study at Tuskegee. For example, Shavers et al. (2002)
reported that African American (81%) were more likely than Whites (28%) to report having knowledge of the SST. Similarly, Katz et al. (2009)
found that 56% of Blacks vs. 38% of Whites were aware of the SST. Further, a qualitative study (Bates & Harris, 2004
) observed a relative absence of mentions of the SST in focus groups by all other racial groups as compared to African Americans. All of these findings suggest that the SST is more salient for African Americans than for Whites.
Finally, a fifth question in previous SST studies is whether racial/ethnic minorities are more likely than Whites to believe that they will be taken advantage of if they were to participate in biomedical, HIV/AIDS trials, or cancer screenings. The answer here is unequivocally affirmative. In a quantitative study with more than 900 respondents results show that 41.7% of African Americans, compared to 23.4% of Whites, had doubts that their physician would fully explain research participation information (Corbie-Smith, Thomas & St. George, 2002
). The study also found that when compared to Whites, African Americans were more likely to report 1) that someone like them would be used as a guinea pig without their consent (79.2% vs. 51.9%), 2) that physicians often prescribe medication in order to experiment on patients without their consent (62.8% vs. 38.4%), and 3) that their physicians had given them treatment as a part of an experiment without their consent (24.5% vs. 8.3%). Similarly, Shavers and colleagues (2002)
found that African Americans were five times more likely to (25.2%) as compare to Whites (5.2%) to believe that most of the risks of medical research are placed on racial/ethnic minorities. Finally, Katz and colleagues (2008)
observed that racial/ethnic minorities, particularly African Americans, perceived high levels of risk when participating in cancer screening examinations. Specifically, African Americans were 8.2 times more likely than Whites to report that African Americans would “always” or “most of the time” be taken advantage of when participating in cancer related biomedical research.
These findings underscore the depth of concerns that African Americans have when contemplating possible participation in biomedical research. Although the SST is often identified as the cause of this distress, it remains unclear what aspect of the Syphilis Study at Tuskegee experience are influential in creating distrust. In the present study, we investigate in more detail than previous studies the ways in which memories of the SST covary with current concerns and misbeliefs about HIV/AIDS. We anticipate that knowledge of the SST contributes to HIV/AIDS misbeliefs in the African American community and that these effects will be more pronounced among African Americans than Latinos.