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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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Authors' Reply to Wynia and Northington Gamble

Posted by plosmedicine on 30 Mar 2009 at 23:52 GMT

Author: David Wendler
Position: Head of the Unit on Vulnerable Populations
Institution: Department of Clinical Bioethics, National Institutes of Health Clinical Center
E-mail: DWendler@cc.nih.gov
Additional Authors: Ezekiel Emanuel, Chair, Department of Clinical Bioethics
Submitted Date: April 10, 2006
Published Date: April 10, 2006
This comment was originally posted as a “Reader Response” on the publication date indicated above. All Reader Responses are now available as comments.

The letter by Drs. Wynia and Northington Gamble is based on an unfortunate conflation of individuals' behavior with their attitudes. Our paper evaluated the often repeated claim that individuals from minority groups are less willing to participate in health research compared to non-Hispanic whites. That is, we evaluated what individuals do, whether they give consent, when invited to participate in health research. We did not and did not claim to evaluate individuals' attitudes toward these requests, or those who make them.

Our findings, based on the existing empirical data, suggest individuals from minority groups who are eligible and invited to participate agree to enroll in health research at rates similar to those of non-Hispanic whites. Drs. Wynia and Northington Gamble read this conclusion as a claim about individuals' attitudes, as a denial of the "substantial body of research that demonstrates how common mistrust of the health care system is among African Americans." This conflation of individuals' behavior related to research enrollment with their levels of trust in the health care system is surprising given that our focus on individuals' willingness to participate in research is described in the title, and repeated throughout the text. Indeed, in an attempt to avoid just this conflation, we explicitly wrote in the text that "we did not assess minority groups' attitudes toward health research."

Drs. Wynia and Northington Gamble also accuse us of ignoring the heterogeneity in the empirical data we found, and claim that "very little information can be reliably gleaned from pooling" these data. With this latter statement, we agree. As explained in the manuscript, the heterogeneity of the data suggests there is no simple relationship between one's race or ethnicity and one's willingness to participate in health research. While little else can be gleaned from these data, their very heterogeneity undermines the claim that individuals from minority groups are consistently less willing than non-Hispanic whites to participate in health research.

Competing interests declared: The authors declare that they have no competing interests.