Minority Health and Health Equity Archive
Permanent URI for this collectionhttp://hdl.handle.net/1903/21769
Welcome to the Minority Health and Health Equity Archive (MHHEA), an electronic archive for digital resource materials in the fields of minority health and health disparities research and policy. It is offered as a no-charge resource to the public, academic scholars and health science researchers interested in the elimination of racial and ethnic health disparities.
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Item Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?(2005) Wendler, David; Kington, Raynard; Madans, Jennifer; Wye, Gretchen Van; Christ-Schmidt, Heidi; Pratt, Laura A.; Brawley, Otis W.; Gross, Cary P.; Emanuel, EzekielBackground: It is widely claimed that racial and ethnic minorities, especially in the US,are less willing than non-minority individuals to participate in health research. Yet,there is a paucity of empirical data to substantiate this claim. Methods and Findings: We performed a comprehensive literature search to identify all puublished health research studies that report consent rates by race or ethnicity. We found 20 health research studies that reported consent rates by race or ethnicity. These 20 studies reported the enrollment decisions of over 70,000 individuals for a broad range of research,from interviews to drug treatment to surgical trials. Eighteen of the twenty studies were single-site studies conducted exclusively in the US or multi-site studies where the majority of sites (i.e., at least 2/3) were in the US. Of the remaining two studies, the Concorde study was conducted at 74 sites in the United Kingdom, Ireland, and France, while the Delta study was conducted at 152 sites in Europe and 23 sites in Australia and New Zealand. For the three interview or non-intervention studies, African-Americans had a nonsignificantly lower overall consent rate than non-Hispanic whites (82.2% versus 83.5%; odds ratio [OR] ¼ 0.92; 95% confidence interval [CI] 0.84–1.02). For these same three studies, Hispanics had a nonsignificantly higher overall consent rate than non-Hispanic whites (86.1% versus 83.5%; OR ¼ 1.37; 95% CI 0.94–1.98). For the ten clinical intervention studies, African-Americans’ overall consent rate was nonsignificantly higher than that of non-Hispanic whites (45.3% versus 41.8%; OR¼1.06; 95% CI 0.78–1.45). For these same ten studies, Hispanics had a statistically significant higher overall consent rate than non-Hispanic whites (55.9% versus 41.8%; OR¼1.33; 95% CI 1.08–1.65). For the seven surgery trials, which report all minority groups together, minorities as a group had a nonsignificantly higher overall consent rate than non-Hispanic whites (65.8% versus 47.8%; OR ¼ 1.26; 95% CI 0.89–1.77). Given the preponderance of US sites, the vast majority of these individuals from minority groups were African-Americans or Hispanics from the US. Conclusions We found very small differences in the willingness of minorities, most of whom were African-Americans and Hispanics in the US, to participate in health research compared to non-Hispanic whites. These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research. Hence, efforts to increase minority participation in health research should focus on ensuring access to health research for all groups, rather than changing minority attitudes.Item Executive Summary: Ethical Considerations for Research Involving Prisoners(National Academies Press, 2006) Committee on Ethical Considerations , for Revisions to DHHS Regulations for Protection of Prisoners Involved in ResearchABSTRACT: In the past 30 years, the population of prisoners in the United States has expanded more than 4.5-fold, correctional facilities are increasingly overcrowded, and more of the country's disadvantaged populations-racial minorities, women, people with mental illness, and people with communicable diseases such as HIV/AIDS, hepatitis C,and tuberculosis-are under correctional supervision. Because prisoners face restrictions on liberty and autonomy, limited privacy, and often inadequate health care, they require specific protections when involved in research, particularly in today's correctional settings. Given these issues,the Department of Health and Human Services" Office for Human Research Protections commissioned the Institute of Medicine to review the ethical considerations regarding research involving prisoners. The resulting analysis emphasizes five broad actions to provide prisoners involved in research with critically important protections: (1) expand the definition of “prisoner;”(2)ensure universally and consistently applied standards of protection;(3)shift from a category-based to a risk-benefit approach to research review;(4)update the ethical framework to include collaborative responsibility; and(5)enhance systematic oversight of research involving prisoners.