Are racial and ethnic minorities less willing to participate in health research?

Abstract

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.

Figure 1. Ethnic and Racial Composition of the United States

Data from year 2003.

Figure 2. Comparison of African-American versus non-Hispanic White Consent Rates

Circle diameter is proportional to the sample size of the individual studies. The diamond represents the overall OR. The vertical line indicates the 95% confidence interval on the OR. Blue indicates interview and non-intervention studies; red indicates clinical intervention studies.

Figure 3. Comparison of Hispanic versus non-Hispanic White Consent Rates

Circle diameter is proportional to the sample size of the individual studies. The diamond represents the overall OR. The vertical line indicates the 95% confidence interval on the OR. Blue indicates interview and non-intervention studies; red indicates clinical intervention studies.

Figure 4. Comparison of Minority versus non-Hispanic White Consent Rates in Surgical Intervention Trials

Circle diameter is proportional to the sample size of the individual studies. The diamond represents the overall OR. The vertical line indicates the 95% confidence interval on the OR.