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Research Article

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

  • David Wendler mail,

    To whom correspondence should be addressed. E-mail: dwendler@nih.gov

    Affiliation: Department of Clinical Bioethics, National Institutes of Health Clinical Center, National Institutes of Health, Bethesda, Maryland, United States of America

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  • Raynard Kington,

    Affiliation: Office of Behavioral and Social Sciences Research, National Institutes of Health, Bethesda, Maryland, United States of America

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  • Jennifer Madans,

    Affiliation: National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, Maryland, United States of America

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  • Gretchen Van Wye,

    Affiliation: Department of Epidemiology, Yale University School of Medicine, New Haven, Connecticut, United States of America

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  • Heidi Christ-Schmidt,

    Affiliation: Statistics Collaborative, Washington, D. C., United States of America

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  • Laura A Pratt,

    Affiliation: National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, Maryland, United States of America

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  • Otis W Brawley,

    Affiliation: Winship Cancer Institute, Emory University, Atlanta, Georgia, United States of America

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  • Cary P Gross,

    Affiliation: Section of General Internal Medicine, Yale University School of Medicine, New Haven, Connecticut, United States of America

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  • Ezekiel Emanuel

    Affiliation: Department of Clinical Bioethics, National Institutes of Health Clinical Center, National Institutes of Health, Bethesda, Maryland, United States of America

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  • Published: December 06, 2005
  • DOI: 10.1371/journal.pmed.0030019

Reader Comments (2)

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Mistrust among minorities and the trustworthiness of medicine.

Posted by plosmedicine on 30 Mar 2009 at 23:51 GMT

Author: 'Matthew' 'Wynia'
Position: Physician
Institution: American Medical Association
E-mail: matthew.wynia@ama-assn.org
Additional Authors: Vanessa Northington Gamble
Submitted Date: March 29, 2006
Published Date: April 3, 2006
This comment was originally posted as a “Reader Response” on the publication date indicated above. All Reader Responses are now available as comments.

Wendler et al have provided important data to help understand disparities in access to medical research among minorites. It is unfortunate, however, that they draw an unwarranted conclusion from a set of extremely heterogeneous studies. Worse still, by suggesting that the substantial body of research that demonstrates how common mistrust of the health care system is among African Americans (1-3) is wrong, the authors imply that we need not come to terms with why this mistrust exists or how it should be addressed by the medical profession.

Wendler et al note the extreme heterogeneity of the trials included in their study, but they ignore how much this affects the reliability of the meta-analytic techniques they employ. First, the vast majority of the "more than 70,000" patients studied were only involved in survey research, where large differences in response rates between races are not generally seen. Looking only at the clinical trials, the numbers are much smaller and the data become much more difficult to summarize. Among the seven surgical intervention trials studied, two have statistically significant differences between minority and white enrollment - in one, whites had about 2.7 times greater odds of enrollment than minorities, while in the other minorities had about 1.6 times greater odds of enrollement than whites. In the 10 clinical trials studied, three had statistically different enrollment rates; they too had greatly diverging results. For the most part, though, the clinical trials that Wendler et al examined enrolled so few minority patients (in half of the studies fewer than 50 minority patients were even asked to enroll), and they are so vastly different in design and objectives, that very little information can be reliably gleaned from pooling their results. In fact, one of the largest trials included, the MBCCOP cancer trial, which included more than 400 African Americans, was specifically designed to appeal to minority patients - making any assumptions about its generalizability to all medical research extremely suspect. Meta-analysis is well known to be subject to this sort of problem; statistical tricks simply can't account for fundamental differences in studies.

Despite these scientific weaknesses, Wendler et al are right to conclude that it is inappropriate to focus on changing African Americans' attitudes of mistrust; but not because those attitudes don't exist. Many minorities don't feel welcome and respected within the health care system. Those who do come in have already crossed a threshold of trust, at least in their individual doctor. Those who don't come in, of course, will never have the opportunity to be asked to enroll in a clinical trial. Instead, the reason it would be inappropriate to focus on changing patient attitudes is because these attitudes of mistrust are based on an historical reality of untrustworthy behaviors by the health professions, which must be acknowledged and rectified. In other words, the medical profession should not focus on making minorities become trusting, we should focus on ensuring that we are becoming trustworthy.

Matthew K. Wynia, MD, MPH, FACP
Vanessa Northington Gamble, MD, PhD

The views expressed are the authors' and should not be ascribed to the American Medical Association or the Tuskegee National Center for Bioethics.

1. Doescher M, Saver B, Franks P, Fiscella K. Racial and ethnic disparities in perceptions of physician style and trust. Arch Fam Med 2000; 9:1156-1163.
2. LaVeist T, Nickerson K, Bowie J. Attitudes about racism, medical mistrust, and satisfaction with care among African American and white cardiac patients. Med Care Res Rev 2000; 57:146-161.
3. Lillie-Blanton M, Brodie M, Rowland D, Altman D, McIntosh M. Race, ethnicity, and the health care system: public perceptions and experiences. Med Care Res Rev 2000; 57:218-35.

Competing interests declared: We declare that we have no competing interests.