title: 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.
  
  
  RESULTS
  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.
authors.affiliation: Department of Clinical Bioethics, National Institutes of Health Clinical Center, National Institutes of Health, Bethesda, Maryland, USA. dwendler@nih.gov
authors.forename: David
authors.initials: D
authors.lastname: Wendler
authors.forename: Raynard
authors.initials: R
authors.lastname: Kington
authors.forename: Jennifer
authors.initials: J
authors.lastname: Madans
authors.forename: Gretchen
authors.initials: G
authors.lastname: Van Wye
authors.forename: Heidi
authors.initials: H
authors.lastname: Christ-Schmidt
authors.forename: Laura A
authors.initials: LA
authors.lastname: Pratt
authors.forename: Otis W
authors.initials: OW
authors.lastname: Brawley
authors.forename: Cary P
authors.initials: CP
authors.lastname: Gross
authors.forename: Ezekiel
authors.initials: E
authors.lastname: Emanuel
mesh_terms: D001741:Black or African American; D001290:Attitude; D002986:Clinical Trials as Topic; D006306:Health Surveys; D006630:Hispanic or Latino; D006801:Humans; D007258:Informed Consent; D010358:Patient Participation; D014481:United States; D044465:White People