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

Abstract

BackgroundIt 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 FindingsWe 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.ConclusionsWe 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.

Health Research Participation, Opportunity, and Willingness Among Minority and Rural Communities of Arkansas

“…However, the findings are consistent with a small number of more recent studies that document a willingness to participate among racial and ethnic minorities 37, 38, 39. This study adds to the growing body of literature suggesting barriers beyond willingness 37, 38, 39. Specifically, the paradoxical findings of this study, which showed no difference in the participation rates of racial/ethnic minorities, yet also showed racial/ethnic minorities report both more opportunity and more willingness, needs further exploration.…”

“…These findings are inconsistent with several nonpopulation‐based studies that suggest racial/ethnic minorities are less willing to participate 9, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36. However, the findings are consistent with a small number of more recent studies that document a willingness to participate among racial and ethnic minorities 37, 38, 39. This study adds to the growing body of literature suggesting barriers beyond willingness 37, 38, 39.…”

Racial/Ethnic Differences in Trust in Health Care: HIV Conspiracy Beliefs and Vaccine Research Participation

“…43 Reviewing data across 20 studies that reported consent rates by race or ethnicity, Wendler et al reported that minorities were less likely to be recruited, but were equally likely to provide consent when asked to participate in health research studies. 44 This line of evidence seems to indicate that disparities in access to research studies, rather than disparate attitudes and beliefs, underlie the underrepresentation of minorities in research.…”

Competing for patients: an ethical framework for recruiting patients with brain tumors into clinical trials

“…There is an increasing wealth of literature showing that patients from visible minorities are underrepresented in clinical trials [22][23][24]. This has been hypothesized to result from raciallyinfluenced distrust, reduced access to healthcare research, or the failure of clinicians to advertise in a culturally competent manner [25,26]. One large study of 70,000 patients suggests that minorities are willing to enroll in trials, but may lack opportunity to participate.…”