Minorities Just as Willing to Participate in Health Research
Ethnic and racial minorities, African Americans, Hispanics, non-Hispanic whites, clinical research. (Definitions of many terms related to cancer can be found in the Cancer.gov Dictionary.)
Americans from ethnic and racial minority groups are as willing to take part in health research studies, when invited to do so, as other groups of Americans, a new study finds. These results contradict the widely held belief that minorities are less willing to enroll in research studies. The findings suggest that efforts to increase minority participation in health research should focus on improving access to studies rather than on changing people’s attitudes toward research.
February 2006 (Vol. 3, Issue 2), Public Library of Science (PloS) Medicine (see the full article).
Although people from racial and ethnic minority groups form an increasing percentage of the American population, they tend to be underrepresented in health research studies. Some authors have claimed that minorities are less willing than non-Hispanic white people to take part in health research.
Minorities’ unwillingness to participate in research is believed to be a result of distrust stemming from past research abuses, most notably the notorious Tuskegee Syphilis Study, in which researchers followed African American men with syphilis for 40 years without obtaining the participants’ informed consent and failed to offer them antibiotic treatment that could have cured their disease.
Yet the authors of the current study found no published data to support the assumption that minorities lacked willingness to participate in research.
The researchers reviewed the medical literature to identify studies that reported their participants’ consent rates (the proportion who agreed to join) by race or ethnicity. They found a total of 20 such studies that had enrolled more than 70,000 participants, most of them in the United States. The studies were of three types:
- Surveys in which participants were simply asked questions about their health.
- Studies of medical treatments for a variety of health conditions, including cancer.
- Studies of surgical treatments.
The researchers then calculated the consent rates of minority participants (principally African Americans and Hispanics) and compared them with the consent rates of non-Hispanic white participants.
The study’s principal investigator was David Wendler, Ph.D., of the National Institutes of Health Clinical Center in Bethesda, Maryland.
Consent rates for the survey studies were 82.2 percent for African Americans, 83.5 percent for non-Hispanic whites, and 86.1 percent for Hispanics. These differences were too small to be statistically significant (that is, they could have occurred by chance).
Consent rates for the studies of medical or surgical treatment were 41.8 percent for non-Hispanic whites, 45.3 percent for African Americans, and 55.9 percent for Hispanics.
Several studies offered enrollment to very few minority individuals. For example, in a study of radiation therapy for ocular melanoma, 2,823 non-Hispanic whites were offered enrollment compared with 15 African Americans and 28 Hispanics.
“These findings contradict the widely held view that racial and ethnic minority groups in the U.S. are less willing than non-Hispanic whites to participate in health research,” the authors write. The study’s results “suggest individuals from minority groups…are as willing as non-Hispanic whites to participate in health research when eligible and invited to participate.”
The authors conclude that “efforts to increase minority participation in health research should focus on increasing minority access to research participation, not changing minority attitudes.” Efforts to increase minority access should include inviting minority groups to participate, using locations accessible to minority groups, and addressing potential barriers such as the need for child care or for reimbursement of travel expenses.
"What is now needed is less blame directed at already marginalized people," writes Aziz Sheikh, M.D., of the University of Edinburgh, United Kingdom, in a related Perspective. "Instead, those with the power to change the way in which research is conducted should translate the important insights provided by Wendler and collegeagues' study into significantly more invitations extended to minority ethnic and racial groups...."
Ted Trimble, M.D., of the National Cancer Institute’s Cancer Therapy Evaluation Program, agrees, saying,. “The results of this study reinforce the message that the most important steps to enrolling patients on clinical trials are to open trials at multiple sites…” – so that it is convenient for patients to participate – “…and getting the enthusiastic buy-in of the doctors and nurses at those sites.”
The study’s findings are limited to published reports in which consent rates were documented by race or ethnicity, and so may not be the complete picture. Also, most of the participants in the identified studies were in the U.S. and the findings may not apply to other countries. Finally, the researchers did not assess minority groups’ attitudes toward health research.
“It may be that past abuses have led to greater distrust [of health research] among minority groups, but that other factors result in individuals from minority groups being equally willing to participate overall,” they write.
Another limitation is that many of the studies included in the analysis did not accurately capture information about participants’ levels of income and education. “This means we can’t analyze the impact of these factors on participation in clinical trials,” says Trimble.
Despite these limitations, says Trimble, the study’s findings are reliable because they are supported by other research.