Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?

Background: 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 published 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] = 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 = 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%; OR = 1.06; 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%; OR = 1.33; 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 = 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. Minorities in the US are as willing as non-Hispanic whites to participate in health research. Efforts to increase minority participation should focus on ensuring equal access to health research rather than changing minority attitudes. Background: Health research is meant to determine the best strategies for preventing and treating disease and to inform health policy. Approval of new drugs and health guidelines is usually issued at a national level. Many countries have ethnically and racially diverse populations, and we know that health parameters are not the same for the different groups. To make sure that health policies serve a diverse population, it is important that all ethnic and racial groups participate in health research. Why Was This Study Done?: Several studies have found that minority groups, especially in the US, are often underrepresented in research studies. One possible explanation that has been suggested is that because of past abuses (especially of African-Americans in the notorious Tuskegee Syphilis Study), minorities are less willing to participate in medical research. The authors of this study wanted to test whether this was indeed the case. What Did the Researchers Do and Find?: They looked through the health literature in a systematic way to find all recent studies that reported consent rates by race or ethnicity (every participant in health research has to give “informed consent”). They found 20 such studies, 18 of which were conducted primarily or exclusively in the US, covering a broad range of research from interview-based surveys to clinical trials. Taken together, these studies reported the decision of over 70,000 individuals who were invited to participate. The researchers then compared the consent rates (i.e., the proportion who actually agreed to participate and gave consent) among non-Hispanic whites, African-Americans, and Hispanics. They found very small differences in the overall willingness of minorities to participate in health research compared with non-Hispanic whites. However, they did find that many of the studies invited fewer minority individuals than would be representative for the US patient population. What Does This Mean?: These results suggest that racial and ethnic minority groups, at least in the US, are as willing as non-minority individuals to participate in health research, but that they are underrepresented among the invited participants. Efforts to increase minority participation should therefore focus on offering participation to more minority individuals rather than focusing on changing minority attitudes. It will be important to determine why minorities are underrepresented among people invited to participate in health research. Another interesting question not answered by this study is what motivates individuals from the different groups to accept an invitation and participate in health research both in general and in a particular survey or trial. Where Can I Find More Information Online?: Information on the Tuskeege study: