Outlook | A Quarterly Newsletter of the Society of Behavioral Medicine

From the Ethnic Minority and Multicultural Health SIG

The following article from the Ethnic Minority and Multicultural Health SIG provides a brief overview about the opportunities and challenges in conducting research with ethnic and racial minority participants.

Michelle Martin, Ph.D.
Assistant Editor to Outlook Newsletter
Ethnic Minority and Multicultural Health SIG

The Willingness of Ethnic and Racial Minorities to Participate in Behavioral Medicine Research

Jeffrey L. Kibler, Ph.D.
Center for Psychological Studies, Nova Southeastern University

Mindy Ma, Ph.D., Division of Social and Behavioral Sciences, Farquhar College of Arts and Sciences, Nova Southeastern University

Despite the importance of including participants from ethnic and racial minority groups in research, and initiatives of funding agencies to mandate adequate inclusion of minorities, there continues to be under-representation of minority groups in behavioral medicine research. Difficulties recruiting individuals of ethnic and racial minority status in biobehavioral research can result in samples that are too small for conventional analyses, limit conclusions drawn from studies, and diminish the ability to improve health services for minority populations. Several variables have been identified as facilitators of research participation for ethnic/racial minorities. Studies in genetics (1), HIV prevention (e.g., 2-3), cardiovascular health (4), and general assessments of community views (e.g., 5-6) have generally associated greater willingness to participate with less mistrust, fewer health-related fears, greater perceived benefits (benefits to the community or personal incentives), altruism, greater health risks, knowing someone with the illness under investigation, and lacking knowledge of the Tuskegee Syphilis Study. These findings are consistent with first-hand experiences of investigators in the field, which suggest that efforts of the research team to immerse themselves in the community, actively engage community members, leaders and gatekeepers, and provide education about study details, are effective for gaining trust and enhancing recruitment (e.g., 7-8). In addition, investigators may provide information that addresses health-related fears of study candidates and effectively communicate the benefits of research participation for potential volunteers and the community. Messages that focus on the potential of research findings to improve quality of life for specific segments of the community may stimulate altruistic intentions for the targeted population.

There is a need for further systematic research of the factors that predict study participation, and the implementation of empirically-based strategies for enhancing recruitment. To date, studies of willingness to participate have primarily focused on African American samples. Given the history of research-related ethical violations involving African Americans, the perspectives of African Americans are central to understanding barriers and facilitators in research participation. However, expanding willingness research to other ethnic and racial minority groups will enhance the understanding of how sociocultural differences between groups may contribute to decisions regarding participation.

Americans are central to understanding barriers and facilitators in research participation. However, expanding willingness research to other ethnic and racial minority groups will enhance the understanding of how sociocultural differences between groups may contribute to decisions regarding participation.

References

Henderson, G., Garrett, J., Bussey-Jones, J., Moloney, M. E., Blumenthal, C., & Corbie-Smith, G. (2008). Great expectations: Views of genetic research participants regarding current and future genetic studies. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 10(3), 193-200.
Kibler, J.L., Ma, M., Bartholow, B.N., Durham, M.D., Sarpong, D., Lally, M.A., et al. (2007). Correlates of willingness to participate in microbicide research among African-American adults in Mississippi. Annals of Behavioral Medicine, 33(Suppl.), S014. [Abstract].
Sengupta, S., Strauss, R.P., Devellis, R., Quinn, S.C., Devellis, B., & Ware, W.B. (2000). Factors affecting African American participation in AIDS research. Journal of Acquired Immune Deficiency Syndromes, 24, 275-284.
Brisco, K., Kibler, J.L., & Dollar, K.M. (2004). Predictors of biobehavioral research participation among African-American students at an urban HBCU. Annals of Behavioral Medicine, 27(Suppl.), S156. [Abstract].
Napoles-Springer, A.M., Grumbach, K., Alexander, M., Moreno-John, G., Forte, D., Rangel-Lugo, M., et al. (2000). Clinical research with older African Americans and Latinos: Perspectives from the community. Research on Aging, 22, 668-691.
Shavers, V., Lynch, C. Burmiester, L. (2001). Factors that influence African-Americans' willingness to participate in medical research studies. Cancer, 91(6), 233-236.
Moreno-John, G., Gachie, A, Fleming, C.M., Nápoles-Springer, A., Mutran, E., Manson, S.M., et al. (2004). Ethnic minority older adults participating in clinical research: Developing trust. Journal of Aging and Health, 16(5) (Suppl.), 93S-123S.
Wyatt, S. B., Diekelmann, N., Henderson, F., Andrew, M. E., Billingsley, G., Felder, S. H., et al. (2003). A community-driven model of research participation: The Jackson Heart Study participant recruitment and retention study. Ethnicity & Disease, 13(4), 438-455.


Fall 2008	Return to Outlook Main page >>
From the Ethnic Minority and Multicultural Health SIG The following article from the Ethnic Minority and Multicultural Health SIG provides a brief overview about the opportunities and challenges in conducting research with ethnic and racial minority participants. Michelle Martin, Ph.D. Assistant Editor to Outlook Newsletter Ethnic Minority and Multicultural Health SIG The Willingness of Ethnic and Racial Minorities to Participate in Behavioral Medicine Research Jeffrey L. Kibler, Ph.D. Center for Psychological Studies, Nova Southeastern University Mindy Ma, Ph.D., Division of Social and Behavioral Sciences, Farquhar College of Arts and Sciences, Nova Southeastern University Despite the importance of including participants from ethnic and racial minority groups in research, and initiatives of funding agencies to mandate adequate inclusion of minorities, there continues to be under-representation of minority groups in behavioral medicine research. Difficulties recruiting individuals of ethnic and racial minority status in biobehavioral research can result in samples that are too small for conventional analyses, limit conclusions drawn from studies, and diminish the ability to improve health services for minority populations. Several variables have been identified as facilitators of research participation for ethnic/racial minorities. Studies in genetics (1), HIV prevention (e.g., 2-3), cardiovascular health (4), and general assessments of community views (e.g., 5-6) have generally associated greater willingness to participate with less mistrust, fewer health-related fears, greater perceived benefits (benefits to the community or personal incentives), altruism, greater health risks, knowing someone with the illness under investigation, and lacking knowledge of the Tuskegee Syphilis Study. These findings are consistent with first-hand experiences of investigators in the field, which suggest that efforts of the research team to immerse themselves in the community, actively engage community members, leaders and gatekeepers, and provide education about study details, are effective for gaining trust and enhancing recruitment (e.g., 7-8). In addition, investigators may provide information that addresses health-related fears of study candidates and effectively communicate the benefits of research participation for potential volunteers and the community. Messages that focus on the potential of research findings to improve quality of life for specific segments of the community may stimulate altruistic intentions for the targeted population. There is a need for further systematic research of the factors that predict study participation, and the implementation of empirically-based strategies for enhancing recruitment. To date, studies of willingness to participate have primarily focused on African American samples. Given the history of research-related ethical violations involving African Americans, the perspectives of African Americans are central to understanding barriers and facilitators in research participation. However, expanding willingness research to other ethnic and racial minority groups will enhance the understanding of how sociocultural differences between groups may contribute to decisions regarding participation. Americans are central to understanding barriers and facilitators in research participation. However, expanding willingness research to other ethnic and racial minority groups will enhance the understanding of how sociocultural differences between groups may contribute to decisions regarding participation. References Henderson, G., Garrett, J., Bussey-Jones, J., Moloney, M. E., Blumenthal, C., & Corbie-Smith, G. (2008). Great expectations: Views of genetic research participants regarding current and future genetic studies. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 10(3), 193-200. Kibler, J.L., Ma, M., Bartholow, B.N., Durham, M.D., Sarpong, D., Lally, M.A., et al. (2007). Correlates of willingness to participate in microbicide research among African-American adults in Mississippi. Annals of Behavioral Medicine, 33(Suppl.), S014. [Abstract]. Sengupta, S., Strauss, R.P., Devellis, R., Quinn, S.C., Devellis, B., & Ware, W.B. (2000). Factors affecting African American participation in AIDS research. Journal of Acquired Immune Deficiency Syndromes, 24, 275-284. Brisco, K., Kibler, J.L., & Dollar, K.M. (2004). Predictors of biobehavioral research participation among African-American students at an urban HBCU. Annals of Behavioral Medicine, 27(Suppl.), S156. [Abstract]. Napoles-Springer, A.M., Grumbach, K., Alexander, M., Moreno-John, G., Forte, D., Rangel-Lugo, M., et al. (2000). Clinical research with older African Americans and Latinos: Perspectives from the community. Research on Aging, 22, 668-691. Shavers, V., Lynch, C. Burmiester, L. (2001). Factors that influence African-Americans' willingness to participate in medical research studies. Cancer, 91(6), 233-236. Moreno-John, G., Gachie, A, Fleming, C.M., Nápoles-Springer, A., Mutran, E., Manson, S.M., et al. (2004). Ethnic minority older adults participating in clinical research: Developing trust. Journal of Aging and Health, 16(5) (Suppl.), 93S-123S. Wyatt, S. B., Diekelmann, N., Henderson, F., Andrew, M. E., Billingsley, G., Felder, S. H., et al. (2003). A community-driven model of research participation: The Jackson Heart Study participant recruitment and retention study. Ethnicity & Disease, 13(4), 438-455.