Rick Weiss describes Wendler and Emanuel’s new study in PLoS:
Having a negative attitude about research is one thing, Emanuel said, “but are you eligible? Are you even offered the study?” Those questions are difficult to answer. Most studies do not reveal how subjects were enrolled or offer racial data for those who said “yes” against those who declined.
To find out, Wendler and Emanuel — both with the NIH’s department of clinical bioethics — along with seven colleagues, conducted a comprehensive computer search of published health studies going back more than 20 years.
They found 20 studies that reported consent rates by race and ethnicity. Some were research surveys in which participants were simply asked to provide personal medical information. Other studies involved new medicines, and still others tested surgical procedures.
All told, the team documented the enrollment decisions of more than 70,000 individuals.
For the three simplest studies, consent rates were the same for blacks, Hispanics and non-Hispanic whites (about 8o percent). For the 10 studies involving medicines, rates were the same for blacks and non-Hispanic whites (about 45 percent) and higher for Hispanics (about 55 percent). And for the seven surgical studies, consent rates were the same for whites and minorities (about 55 percent).
NIH Deputy Director Raynard S. Kington, who helped run the new study, said the results rang true to him. When years ago, as chief of the nation’s largest health survey, he sought recruits from communities black and white, he often found poor minorities more willing than wealthy whites to volunteer.
The new data shift the burden of responsibility from research subjects to the researchers, Kington said, and suggest that efforts to improve minority participation through educational campaigns need to be rethought.