Minority Health and Health Equity Archive
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Item Avoiding Gender and Minority Barriers to NIH Funding(2000) Harden, J. Taylor; McFarland, GertrudeAbstract available at publisher's web site.Item Commentary on "Increasing Minority Participation in Clinical Research": A White Paper from The Endocrine Society(2007) Alexander-Bridges, M.; Doan, L. L.Underrepresentation of racial and ethnic minorities in clinical research limits the applicability of trial results to diverse subpopulations. Recognizing an ongoing need to increase participation by minorities, The Endocrine Society established a task force of thought leaders from all stakeholder groups—the pharmaceutical industry, federal agencies, academia, and community groups—to develop a white paper outlining recommendations for meeting this need. The primary goal is to ensure that clinical research supporting the safety and efficacy of pharmaceutical products and the validity of biomarkers used to design therapeutic strategies is based on statistically powered data derived from minority subpopulations. To realize…Item The Origins of Informed Consent: The International Scientific Commission on Medical War Crimes, and the Nuremburg Code(2001) Weindling, PaulThe Nuremberg Code has generally been seen as arising from the Nuremberg Medical Trial. This paper examines developments prior to the Trial, involving the physiologist Andrew Conway Ivy and an inter-Allied Scientific Commission on Medical War Crimes. The paper traces the formulation of the concept of a medical war crime by the physiologist John West Thompson, as part of the background to Ivy's code on human experiments of 1 August 1946. It evaluates subsequent responses by the American Medical Association, and by other war crimes experts, notably Leo Alexander, who developed Ivy's conceptual framework. Ivy's interaction with the judges at Nuremberg alerted them to the importance of formulating ethical guidelines for clinical research.Item Historical background of clinical trials involving women and minorities.(1994) McCarthy, C RThe author provides a historical context for the difficult ethical and clinical issues associated with the inclusion of women and members of minority groups in clinical research. He cites as a point of departure the Nuremberg Code of the late 1940s, which declared the fundamental dignity of human beings involved as research subjects, a principle that was quickly endorsed worldwide. From the period following World War II through the 1970s, the prevailing attitude--not always practiced--toward research subjects in the United States was that they should be protected from exploitation. That attitude was reflected in the first broad federal policy on research subjects, created in 1966. During those years, research was widely regarded by the public as dangerous and of little value to individual participants; it is remarkable that so many men and women consented to participate in clinical studies at that time. Furthermore, during the 1970s, for reasons explained by the author, various events--the abortion debate, disclosures from the infamous Tuskegee syphilis study, Nixon's "war on cancer," new federal regulations in 1974 and 1975 (the latter providing additional protection for pregnant women in research), the broad interpretation of the FDA's 1977 policy excluding pregnant or potentially pregnant women from clinical trials, and the tendency of blacks and persons from other minority groups to shun participation in research--tended to deter participation of women and members of minority groups in clinical research.(ABSTRACT TRUNCATED AT 250 WORDS)Item Ethnic Minority Older Adults Participating in Clinical Research: Developing Trust(2004) Moreno-John, G.Objectives:African American, Latino, and American Indian older adults are underrepresented in clinical research studies. A significant barrier to participation in research is mistrust of the scientific community and institutions. The aims of this article are to discuss the lack of representation of ethnic minorities in clinical research. Methods:This article presents a review of the literature regarding medical research mistrust. Also described are the trust-building activities of the Resource Centers on Minority Aging Research (RCMAR), federally funded centers focused on research and aging in communities of color. Discussion:The RCMAR centers are building trust with the communities they serve, resulting in the recruitment and retention of ethnic minority older adults in clinical research studies and health promotion projects. Implications are discussed for other researchers toward building trust with ethnic minority elders to increase their participation in research.Item Closing the circle between minority inclusion in research and health disparities.(2004) Corbie-Smith, Giselle; Moody-Ayers, Sandra; Thrasher, Angela DIncreasing participation of minorities in clinical research has been a national scientific priority. Doubt and distrust, however, characterize many minorities' concern about whether their contributions as research participants will be reflected in improved health for them and their communities. What obligations do researchers have in ensuring that the societal benefits of research are enjoyed by underserved communities? What strategies can be used? Drawing on historical examples and recent policy initiatives, we describe how researchers can close the circle between inclusion of minorities in clinical research and reduction of health disparities by fulfilling obligations to methodology and community involvement.Item Different types of distrust in clinical research among whites and African Americans.(2011) Durant, Raegan W; Legedza, Anna T; Marcantonio, Edward R; Freeman, Marcie B; Landon, Bruce EBACKGROUND: African Americans are thought to be more distrustful of clinical research compared to elderly whites, but it is unknown whether specific types of distrust in clinical research, such as interpersonal or societal distrust, vary according to race. The primary objective was to identify racial differences in interpersonal or societal distrust in clinical research among African Americans and whites. METHODS: Seven hundred seventy-six older African Americans and whites were surveyed about their interpersonal and societal distrust using a 7-item index of distrust in clinical research. We combined the 2 societal distrust items into a societal distrust subscale. We also assessed trust in primary care physicians, access to care, health/functional status, previous exposure to clinical research, awareness of the Tuskegee Syphilis Study, perceived discrimination in health care, and sociodemographic characteristics. RESULTS: High societal distrust was more common among African Americans compared to whites (21% vs 7% in the top quartile of the societal distrust, p < .0001), but there were no racial differences in responses to the individual interpersonal distrust index items. In sequentially built multivariable analyses, the relationship between African American race and societal distrust (odds ratio, 2.2; 95% CI, 1.2-3.7) was not completely explained by other factors such as trust in one's physician, previous discrimination, or awareness of the Tuskegee Syphilis Study. CONCLUSIONS: Racial differences according to the type of distrust in clinical research may warrant assessing specific types of distrust separately among racially diverse populations in future studies.Item Rectifying Institutional Bias in Medical Research(2009) Saha, SomnathIncreasing the representation of women and racial and ethnic minorities in human research has become a national priority. Federal agencies have made inclusion of women and minorities an explicit criterion on which applications for clinical research funding are judged.1 The need for this affirmative action stems from a historical bias favoring white men. As with most other institutions in the United States, medical research no longer actively excludes women and minorities. But the history of these institutions, the way they were designed and built—predominantly by and for white men—slants them in a way that continues to limit access for other groups. Federal efforts to remedy this institutional bias have not been very successful. Data from cancer clinical trials suggest that minority representation in research has not only failed to increase but has actually declined over time.