Minority Health and Health Equity Archive
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Item The legacy of the Tuskegee Syphilis Study: assessing its impact on willingness to participate in biomedical studies.(2008) Katz, Ralph V; Green, B Lee; Kressin, Nancy R; Kegeles, S Stephen; Wang, Min Qi; James, Sherman A; Russell, Stefanie L; Claudio, Cristina; McCallum, Jan MThe phrase, 'legacy of the Tuskegee Syphilis Study', is sometimes used to denote the belief that Blacks are more reluctant than Whites to participate in biomedical research studies because of the infamous study of syphilis in men run by the U.S. Public Health Service from 1932-72. This paper is the first to attempt to assess directly the accuracy of this belief within a multi-city, multi-racial, large-scale, detailed random survey. We administered the Tuskegee Legacy Project (TLP) Questionnaire to 826 Blacks and non-Hispanic White adults in three U.S. cities. While Blacks had higher levels of general awareness of the Tuskegee Syphilis Study, there was no association between either awareness or detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, either for Blacks or Whites observed in our survey. While this study refutes the notion that there is a direct connection between detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, it does not assess the broader question of whether and how historical events influence people's willingness to participate in research. Future studies should explore this.Item Exploring Unconscious Bias in Disparities Research and Medical Education(2011) van Ryn, M.; Saha, S.The evidence that physician behavior and decision making may contribute to racial inequalities in health care1,2,3,4,5 is difficult to reconcile with the fact that most physicians are genuinely motivated to provide good care to all their patients.6 This apparent contradiction can cause considerable cognitive dissonance, the uncomfortable feeling that occurs when holding 2 conflicting ideas simultaneously. Cognitive dissonance has been shown to be so aversive that people are highly motivated to resolve it, often by discounting the evidence supporting one of the conflicting beliefs. For scientists, however, cognitive dissonance motivates inquiry into how 2 seemingly contradictory sets of facts can coexist. The study by Haider and colleagues 7 in this issue of JAMA is part of a growing body of work applying concepts and methods from cognitive and social psychology to medical care and education research to understand and inform …Item Awareness of the Tuskegee Syphilis Study and the US Presidential Apology and Their Influence on Minority Participation in Biomedical Research(2008) Katz, R. V.; Kegeles, S. S.; Kressin, N. R.; Green, B. L.; James, S. A.; Wang, M. Q.; Russell, S. L.; Claudio, C.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.Item The Legacy of Tuskegee: Investigating Trust in Medical Research and Health Disparities(2010) Spencer, Dennis J.What was done cannot be undone, but we can end the silence … We cannot be one America when a whole segment of our nation has no trust in America. We can stop turning our heads away. We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry. (Clinton, 1997) This apology offered in 1997 by then President Bill Clinton uncovered painful sores that many would like to believe had healed long ago. It is only recently that a growing number of social scientists have appreciated that persisting disparities reflect more than simple socioeconomic and educational parity. By examining the long-term psychological effects of Tuskegee, it becomes apparent that some African-Americans have lost all trust in their former abusers—the medical establishment—unintentionally perpetuating health disparities in their communities.Item ETHICS: Protecting Communities in Biomedical Research(2000) Weijer, C.Although for the last 50 years, ethicists dealing with human experimentation have focused primarily on the need to protect individual research subjects and vulnerable groups, biomedical research, especially in genetics, now requires the establishment of standards for the protection of communities. We have developed such a strategy, based on five steps. (i) Identification of community characteristics relevant to the biomedical research setting, (ii) delineation of a typology of different types of communities using these characteristics, (iii) determination of the range of possible community protections, (iv) creation of connections between particular protections and one or more community characteristics necessary for its implementation, and (v) synthesis of community characteristics and possible protections to define protections appropriate for each type of community. Depending on the particular community, consent and consultation, consultation alone, or no added protections may be required for research.Item Categorization of humans in biomedical research: genes, race and disease(2002) Risch, Neil; Burchard, Esteban; Ziv, Elad; Tang, HuaA debate has arisen regarding the validity of racial/ethnic categories for biomedical and genetic research. Some claim ‘no biological basis for race’ while others advocate a ‘race-neutral’ approach, using genetic clustering rather than self-identified ethnicity for human genetic categorization. We provide an epidemiologic perspective on the issue of human categorization in biomedical and genetic research that strongly supports the continued use of self-identified race and ethnicity.Item National Institute of General Medical Sciences Strategic Plan for Reducing Health Disparities(2002) National Institute of, General Medical SciencesThroughout all of NIGMS’s research and research training programs, emphasis is placed on increasing the participation of underrepresented minorities in the biomedical research enterprise. One important consequence of a more diverse research community is likely to be increased attention to areas of research that can reduce health disparities.