Academic journal article ABNF Journal

Influence of Scary Beliefs about the Tuskegee Syphilis Study on Willingness to Participate in Research

Academic journal article ABNF Journal

Influence of Scary Beliefs about the Tuskegee Syphilis Study on Willingness to Participate in Research

Article excerpt

Abstract: Objectives. To assess whether scary/alarming beliefs about details on the Tuskegee Syphilis Study (TSS) are associated with willingness and/or fear to participate in biomedical research. Methods. Scary beliefs about TSS were examined for 565 Black and White adults who had heard of the TSS. Multivariate analyses by race were used to measure association. Results. No association between scary beliefs and willingness or fear to participate in research was found (P>0.05). Conclusions. These findings provide additional evidence that awareness or detailed knowledge about the TSS does not appear today to be a major factor influencing Blacks ' willingness to participate in research.

Key Words: Tuskegee Syphilis Study, Biomedical Research, Minority Participation

The Tuskegee Syphilis Study (TSS) is an infamous 40 year long research study conducted by the US Public Health Service, that exploited hundreds of Black sharecroppers from Macon County, Alabama who were infected with syphilis by following and studying those subjects, virtually untreated, until their deaths (Jones, 1993; Reverby, 2009). For the first three decades after the cessation of the Tuskegee Syphilis Study in 1972, the unethical and immoral conduct that occurred during that study has frequently been used as a reason why Blacks are less likely to participate in biomedical research than are Whites, both in books (Jones, 1993; Reverby, 2009; Gamble & Fletcher, 2000), published papers (Thomas & Quinn, 1991; Shavers-Hornaday & Lynch, 1997; Gamble, 1993, 1997; Caplan, 1992; Benedek, 1978; Corbie-Smith, 2004; Pressel, 2003; Bouleware, Cooper, Ratner, LaVeist, & Powe, 2003; Brandon, Issac, & LaVeist, 2005; White, 2005; Fairchild & Bayer, 1999), as well as national conferences (University of Virginia, 1994). Following earlier limited evidence provided from nine preliminary surveys in the last decade (McCallum, Arekere, Green, Katz, & Rivers, 2006; Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999; Green, Maisiak, Wang, Britt, & Ebeling, 1997; Green et al., 2000; Freimuth, Quinn, Thomas, Cole, Zook, & Duncan, 2001; Bates & Harris, 2004; Sengupta, Strauss, DeVellis, Quinn, DeVellis, & Ware, 2000; Brown & Topcu, 2003; Shavers, Lynch, & Burmeister, 2000), the Tuskegee Legacy Project (TLP) was initiated to determine if Blacks were, in fact, less likely to participate in biomedical research and if so, was that reluctance due to the Tuskegee Syphilis Study.

The first paper from the four-city TLP study compared the self-reported willingness of Blacks and Whites to participate as research subjects in biomedical studies, and reported the findings on two validated scales within the TLP Questionnaire: the Likelihood to Participate (LOP) scale and the Guinea Pig Fear Factor (GPFF) scale (Katz et al., 2006). This first paper reported that there were no differences in willingness to participate, as measured by the LOP scale, between Blacks and Whites although the GPFF scale on fear showed significant differences between racial/ethnic groups, with Blacks being 1.8 times more likely as Whites to have a higher fear of participation in biomedical research. These results were replicated in a separate three-city TLP study that was conducted three years later in three different cities (Katz, Green, Kressin, Claudio, Wang, & Russell, 2007).

The second TLP paper examined whether either general awareness or detailed knowledge of the TSS affected Blacks' and Whites' willingness to participate in biomedical research studies (Katz et al., 2008). Awareness of TSS was measured dichotomously (i.e., yes or no) as a result of participants' response to being asked if they had ever heard of the TSS. For all subjects who answered yes to the general awareness inquiry, the TSS Facts & Myths Quiz was administered to measure the respondent's level of detailed knowledge about seven true/false factual questions identifying some of the major facts and myths associated with the TSS. …

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