Participation in biomedical research studies and cancer screenings: Perceived risks by Blacks, Hispanics, and Whites in seven U.S. cities across three surveys

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Purpose::
 This analysis was conducted to determine whether there is a difference, among Blacks, Hispanics, and Whites, in their perception of risks associated with participating either in a biomedical study or in a cancer screening.
 Methods:
 These data were obtained by the repeated use of several key questions on perceived risks in three separate random-digit dial telephone surveys conducted using the same survey protocol between 1999 and 2003 in seven U.S. cities. Two of the surveys focused on perception of risk associated with participation as a research subject in biomedical studies, and one survey focused on perception of risk associated with having a cancer screening examination. The Tuskegee Legacy Questionnaire which focused on research subject participation was administered in two different surveys (1991-2000, and 2003) in 7 cities while the Cancer Screening Questionnaire was administered in 2003 in three cities.
 Results:
 The study sample across the three surveys consisted of 1,064 Blacks, 781 Hispanics and 1,598 non-Hispanic Whites with response rates which ranged from 44% to 70% by city.
 When asked about African-Americans, as compared to Whites, being ‘taken advantage of’ when participating in biomedical studies,: 1) Blacks and Hispanics were 3.4 - 8.2 times as likely to respond ‘always, or most of the time’ that African-Americans would be taken advantage of; and 2) for having a cancer screening, Blacks and Hispanics were equally likely to state that African-Americans would have a less thorough examination ‘always, or most of the time’ as compared to Whites (2.9 and 3.0 times as likely, respectively).
 The parallel questions posed about Hispanics, as compared to Whites, being ‘taken advantage of’ revealed that: 1) for participating in biomedical studies , both Blacks and Hispanics were 3.5 - 9.4 times more likely to say that Hispanics would ‘always, or most of the time’ be taken advantage of’; and, 2) for having a cancer screening, Blacks and Hispanics were 3.4- 3.6 times as likely to say that Hispanics would have a less thorough examination ‘always, or most of the time’.
 Logistic regression analyses, adjusted for age, sex, education, income and city, revealed that Blacks and Hispanics each self-reported that minorities, as compared to Whites, are much more likely to be ‘taken advantage of’ in biomedical studies and much less likely to get a ‘thorough and careful examination’ in a cancer screening (ORs ranged from 3.6-14.2).
 Conclusions:
 While volunteering to be a subject in a research study inherently and overtly carries clear ‘risks of participation’, it is surprising that this concept of ‘being taken advantage of’ carries over so equally into routine cancer screening examinations. The fact that Blacks and Hispanics, who carry a disproportionate burden of cancer risks in the U.S., perceive equally high levels of risk for participating in cancer screening examinations as they do for volunteering to become research subjects in biomedical studies provides a very strong message to health care providers, organizations and systems about the need to overtly address this critical health disparities issue.
 Acknowledgements: These three studies were supported by two NIDCR/NIH grants: U54 DE 14257, an NIDCR Oral Health Disparities Center; and P50 DE10592, an NIDCR Regional Research Center for Minority Oral Health