Original report
Racial Differences in Factors that Influence the Willingness to Participate in Medical Research Studies

https://doi.org/10.1016/S1047-2797(01)00265-4Get rights and content

Abstract

PURPOSE: The relative absence of racial/ethnic minorities among medical research subjects is receiving considerable attention because of recent government mandates for their inclusion in all human subject research. We examined racial differences in the prevalence of sociocultural barriers as a possible explanation for the underrepresentation of African Americans in medical research studies.

METHODS: During 1998–1999, a total of 198 residents of the Detroit Primary Metropolitan Statistical Area (PMSA) participated in a survey that examined impediments to participation in medical research studies. Chi square tests and logistic regression analyses were used to examine the association between race, issues related to trust of medical researchers, and the willingness to participate in medical research studies.

RESULTS: Study results indicate that African Americans and whites differ in their willingness to participate in medical research. Racial differences in the willingness to participate in a medical research are primarily due to the lower level of trust of medical research among African Americans. African American respondents were also somewhat less willing to participate if they attribute high importance to the race of the doctor when seeking routine medical care, believed that minorities bear most of the risks of medical research, and if their knowledge of the Tuskegee Study resulted in less trust in medical researchers.

CONCLUSION: These data reiterate the need for medical researchers to build trusting relationships with minority communities. Researchers can begin by acknowledging the previous medical abuse of minority research participants, discussing their specific plans to assure the protection of study participants, and explaining the need for the participation of racial/ethnic minorities including studies that specifically target or that are likely to result in disproportionate representation of racial/ethnic minorities among study participants.

Section snippets

Selected Abbreviations and Acronyms

PMSA = Primary Metropolitan Statistical Area

SUDAAN = The Survey Data Analysis Program, Version 7.5

Methods

Eligible households were located in selected occupied housing units in the Detroit PMSA. Eligible respondents were 18 years of age or older and were current residents of a selected household. The head of the household or their spouse, at their discretion, completed the questionnaire/interview. Housing units were excluded if there were no eligible respondents (i.e., no respondent at least 18 years old, vacant housing units, respondent was too sick to participate or the respondent didn't speak

Results

Six hundred seventy-two households were eventually selected from the 1069 occupied census tracts in the Detroit PMSA (Figure 1). Response rates and eligibility are provided in Figure 2. A total of 42 households were coded as ineligible for the mail survey portion of the study. The proportion of households coded as ineligible for the mail survey within the City of Detroit and suburban areas was about 6% for each.

Among the 284 households initially identified for the telephone survey, nine percent

Discussion

Study results indicate that association between race and the willingness to participate in a medical research study is a result of racial differences in issues related to trust of medical research. African American respondents more frequently attributed race/ethnicity as a factor in the distribution of the burden of medical research risks than did whites. A large proportion of whites indicated that more of the risks of medical research are borne by the poor. This was considerably less than the

Conclusion

Human behavior and motivation are products of the complex interrelationship of social conditions, environmental exposures, and historical experiences. Race and ethnicity have been major influences on individual and group experiences of minorities in the U.S. 29, 55, 56, 57. This is the basis for the distrust that impedes African American participation in medical research studies. Trust building with African Americans, therefore, will be dependent upon reducing the occurrence of experiences and

Acknowledgements

This study was funded by grant number R03 HS09597–01 from the Agency for Health Care Policy and Research and grant number 1 F31 CA 72125–01A1 from the National Cancer Institute. This study would not have been possible without the cooperation and interest of the study participants. Thanks to Kathy Helzlsouer, M.D. for her assistance with the final draft of this manuscript and Anthony Alberg, Ph.D., for his assistance with the logistic regression analyses. The authors also gratefully acknowledge

References (58)

  • S Lagakos et al.

    Effects of zidovudine therapy in minority and other subpopulations with early HIV

    J Am Med Assoc.

    (1991)
  • J Horgan

    Affirmative action. AIDS researchers seek to enroll more minorities in clinical trials

    Sci Am.

    (1989)
  • D.J Cotton et al.

    Determinants of accrual of women to a large multi-center clinical trials program of human immunodeficiency virus infection

    J Acquir Immune Defic Syndr.

    (1993)
  • S.H Zahm et al.

    Inclusion of women and minorities in occupational cancer epidemiology research

    J Occup Med

    (1994)
  • C Henderson

    Meeting planned to encourage minority involvement in trials

    Cancer Wkly Plus.

    (1997)
  • H.A Tejeda et al.

    Representation of African Americans, Hispanics, and Whites in National Cancer Institute treatment trials

    J Natl Cancer Inst.

    (1996)
  • W.A Bleyer et al.

    Equal participation of minority patients in U.S. national pediatric cancer clinical trials

    J Pediatr Hematol Oncol.

    (1997)
  • C.R Thomas et al.

    Participation in clinical trialsIs state-of art treatment for African Americans and other people of color?

    J Natl Med Assoc.

    (1994)
  • B.L Weiss et al.

    The black patient and research in a community mental health centerWhere have all the subjects gone?

    Am J Psychiatry.

    (1974)
  • A.S Fauci

    AIDS — challenges to basic and clinical biomedical research

    Acad Med.

    (1989)
  • W El-Sadr et al.

    The challenge of minority recruitment in clinical trials for AIDS

    J Am Med Assoc.

    (1992)
  • S Million-Underwood et al.

    Determinants of participation in state-of-the-art cancer prevention, early detection/screening, and treatment trials among African Americans

    Cancer Nurs.

    (1993)
  • G.M Swanson et al.

    Recruiting minorities into clinical trialsToward a participant-friendly system

    J Natl Cancer Inst.

    (1995)
  • Y Harris et al.

    Why African Americans may not be participating in clinical trials

    J Natl Med Assoc.

    (1996)
  • S.B Robinson et al.

    Attitude of African Americans regarding prostate cancer clinical trials

    J Commun Health.

    (1996)
  • V.L Shavers-Hornaday et al.

    Why are African Americans under-represented in medical research studies? Impediments to participation

    Ethn Health.

    (1997)
  • P.A King

    The dangers of difference

    Hastings Center Rep.

    (1992)
  • Bateman M, Kardinal CG, Lifsey D, Gralla RJ, Washington A, Scroggins T, et al. Barriers to minority recruitment:...
  • K.A Welsh et al.

    Issues affecting minority participation in research studies of Alzheimers Disease

    Alzheimer Dis Assoc Disord.

    (1994)
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