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Low Rates of African American Participation in Genetic Counseling and Testing for BRCA1/2 Mutations: Racial Disparities or Just a Difference?

  • Original Research
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Journal of Genetic Counseling

Abstract

Low rates of genetic counseling among African American women have generated concerns about disparities; however, to the extent that women’s decisions to accept or decline counseling are consistent with their values, then lower participation may reflect preferences and not disparities. We evaluated the extent to which women were satisfied with their decision about participating in genetic counseling for BRCA1/2 mutations and identified variables that were associated significantly with satisfaction. Prospective study of decision satisfaction with 135 African American women who had a minimum 5% prior probability of having a BRCA1/2 mutation. Decision satisfaction was evaluated one month after women were offered participation in genetic counseling using a structured questionnaire. Women were satisfied with their participation decision; more than 80% reported that their decision was consistent with their family values. However, women who declined pre-test counseling had significantly lower satisfaction scores. Our findings highlight the importance ensuring that racial differences that are due to preferences and values are not misclassified as disparities in order to identify and address the root causes of disparate treatment.

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References

  • American Cancer Society. (2009). Cancer facts and figures, 2009. Atlanta: American Cancer Society.

    Google Scholar 

  • Armstrong, K., Micco, E., Carney, A., Stopfer, J., & Putt, M. (2005). Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. Journal of the American Medical Association, 293(14), 1729–1736.

    Article  PubMed  CAS  Google Scholar 

  • Baquet, C. R., Hammond, C., Commiskey, P., Brooks, S., & Mullins, C. D. (2002). Health disparities research–a model for conducting research on cancer disparities: characterization and reduction. Journal of the Association for Academic Minority Physicians, 13(2), 33–40.

    PubMed  Google Scholar 

  • Briss, P., Rimer, B., Reilley, B., Coates, R. C., Lee, N. C., Mullen, P., et al. (2004). Promoting informed decisions about cancer screening in communities and healthcare systems. American Journal of Preventive Medicine, 26(1), 67–80.

    Article  PubMed  Google Scholar 

  • Charles, S., Kessler, L., Stopfer, J. E., Domchek, S., & Halbert, C. H. (2006). Satisfaction with genetic counseling for BRCA1 and BRCA2 mutations among African American women. Patient Education and Counseling, 63(1–2), 196–204.

    Article  PubMed  Google Scholar 

  • DeMarco, T. A., Peshkin, B. N., Mars, B. D., & Tercyak, K. P. (2004). Patient satisfaction with cancer genetic counseling: a psychometric analysis of the Genetic Counseling Satisfaction Scale. Journal of Genetic Counseling, 13(4), 293–304.

    Article  PubMed  Google Scholar 

  • Domchek, S. M., Eisen, A., Calzone, K., Stopfer, J., Blackwood, A., & Weber, B. L. (2003). Application of breast cancer risk prediction models in clinical practice. Journal of Clinical Oncology, 21(4), 593–601.

    Article  PubMed  Google Scholar 

  • Doswell, W. (2002). Health disparities research: exploring different research pathways. Research in Nursing and Health, 25(2), 87–88.

    Article  PubMed  Google Scholar 

  • Frank, T. S., Deffenbaugh, A. M., Reid, J. E., Hulick, M., Ward, B. E., Lingenfelter, B., et al. (2002). Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: analysis of 10,000 individuals. Journal of Clinical Oncology, 20(6), 1480–1490.

    Article  PubMed  CAS  Google Scholar 

  • Halbert, C. H., Brewster, K., Collier, A., Smith, C., Kessler, L., Weathers, B., et al. (2005a). Recruiting African American women to participate in hereditary breast cancer research. Journal of Clinical Oncology, 23(31), 7967–7973.

    Article  Google Scholar 

  • Halbert, C., Kessler, L., Collier, A., Wileyto, E. P., Brewster, K., & Weathers, B. (2005b). Psychological functioning in African American women at an increased risk of hereditary breast and ovarian cancer. Clinical Genetics, 68(3), 222–227.

    Article  Google Scholar 

  • Halbert, C. H., Kessler, L., Stopfer, J. E., Domchek, S., & Wileyto, E. P. (2006). Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer. Genetics in Medicine, 8(9), 576–582.

    Article  PubMed  Google Scholar 

  • Halbert, C. H., Love, D., Mayes, T., Collier, A., Weathers, B., Kessler, L., et al. (2008). Retention of African American women in cancer genetics research. American Journal of Medical Genetics Part A, 146A(2), 166–173.

    Article  PubMed  Google Scholar 

  • Halbert, C. H., Kessler, L., Troxel, A. B., Stopfer, J. E., & Domchek, S. (2010). Effect of genetic counseling and testing for BRCA1 and BRCA2 mutations in African American women: a randomized trial. Public Health Genomics, 13, 440–448.

    Google Scholar 

  • Holmes-Rovner, M., Kroll, J., Schmitt, N., Rovner, D. R., Breer, M. L., Rothert, M. L., et al. (1996). Patient satisfaction with health care decisions: the satisfaction with decision scale. Medical Decision Making, 16(1), 58–64.

    Article  PubMed  CAS  Google Scholar 

  • Hughes, C., Gomez-Caminero, A., Benkendorf, J., Kerner, J., Isaacs, C., Barter, J., et al. (1997). Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Education and Counseling, 32(1–2), 51–62.

    Article  PubMed  CAS  Google Scholar 

  • Hughes, C., Fasaye, G. A., LaSalle, V. H., & Finch, C. (2003). Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Education and Counseling, 51(2), 107–114.

    Article  PubMed  Google Scholar 

  • Kinney, A. Y., Simonsen, S. E., Baty, B. J., Mandal, D., Neuhausen, S. L., Seggar, K., et al. (2006). Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred. American Journal of Medical Genetics A, 140(8), 813–826.

    Article  Google Scholar 

  • Klemp, J. R., O’Dea, A., Chamberlain, C., & Fabian, C. J. (2005). Patient satisfaction of BRCA1/2 genetic testing by women at high risk for breast cancer participating in a prevention trial. Familial Cancer, 4(4), 279–284.

    Article  PubMed  Google Scholar 

  • Kumanyika, S. K., Whitt-Glover, M. C., Gary, T. L., Prewitt, T. E., Odoms-Young, A. M., Banks-Wallace, J., et al. (2007). Expanding the obesity research paradigm to reach African American communities. Preventing Chronic Disease, 4(4), A112.

    PubMed  Google Scholar 

  • Lerman, C., Narod, S., Schulman, K., Hughes, C., Gomez-Caminero, A., Bonney, G., et al. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. Journal of the American Medical Association, 275(24), 1885–1892.

    Article  PubMed  CAS  Google Scholar 

  • Lerman, C., Hughes, C., Benkendorf, J. L., Biesecker, B., Kerner, J., Willison, J., et al. (1999). Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiology Biomarkers and Prevention, 8(4 Pt 2), 361–367.

    CAS  Google Scholar 

  • Long, J. A., Chang, V. W., Ibrahim, S. A., & Asch, D. A. (2004). Update on the health disparities literature. Annals of Internal Medicine, 141(10), 805–812.

    PubMed  Google Scholar 

  • Murff, H. J., Byrne, D., Haas, J. S., Puopolo, A. L., & Brennan, T. A. (2005). Race and family history assessment for breast cancer. Journal of General Internal Medicine, 20(1), 75–80.

    Article  PubMed  Google Scholar 

  • Nanda, R., Schumm, L. P., Cummings, S., Fackenthal, J. D., Sveen, L., Ademuyiwa, F., et al. (2005). Genetic testing in an ethnically diverse cohort of high-risk women: a comparative analysis of BRCA1 and BRCA2 mutations in American families of European and African ancestry. Journal of the American Medical Association, 294(15), 1925–1933.

    Article  PubMed  CAS  Google Scholar 

  • National Cancer Institute (2006). Strategic plan to reduce and ultimately eliminate health disparities.

  • O’Connor, A., & O’Brien-Pallas, L. L. (1989). Decisional conflict. In G. K. McFarland & E. A. McFarlane (Eds.), Nursing diagnosis and intervention (p. 573). Toronto: C.V. Mosby.

    Google Scholar 

  • Penchansky, R., & Thomas, J. W. (1981). The concept of access: definition and relationship to consumer satisfaction. Medical Care, 19(2), 127–140.

    Article  PubMed  CAS  Google Scholar 

  • Schulman, K. A., Berlin, J. A., Harless, W., Kerner, J. F., Sistrunk, S., Gersh, B. J., et al. (1999). The effect of race and sex on physicians’ recommendations for cardiac catheterization. New England Journal of Medicine, 340(8), 618–626.

    Article  PubMed  CAS  Google Scholar 

  • Schwartz, M. D., Hughes, C., Roth, J., Main, D., Peshkin, B. N., Isaacs, C., et al. (2000). Spiritual faith and genetic testing decisions among high-risk breast cancer probands. Cancer Epidemiology, Biomarkers and Prevention, 9(4), 381–385.

    PubMed  CAS  Google Scholar 

  • Schwartz, M. D., Lerman, C., Brogan, B., Peshkin, B. N., Isaacs, C., DeMarco, T., et al. (2005). Utilization of BRCA1/BRCA2 mutation testing in newly diagnosed breast cancer patients. Cancer Epidemiology, Biomarkers and Prevention, 14(4), 1003–1007.

    Article  PubMed  CAS  Google Scholar 

  • Smedley, B. D., Stith, A. Y., Nelson, A. R., & Care, Io. M. U. S. Co. Ua. E. Ra. E. Di. H. (2003). Unequal treatment: confronting racial and ethnic disparities in health care. Washington, D.C.: National Academy Press.

    Google Scholar 

  • Thompson, H. S., Valdimarsdottir, H. B., Duteau-Buck, C., Guevarra, J., Bovbjerg, D. H., Richmond-Avellaneda, C., et al. (2002). Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiology, Biomarkers and Prevention, 11(12), 1579–1585.

    PubMed  Google Scholar 

  • van Ryn, M., & Burke, J. (2000). The effect of patient race and socio-economic status on physicians’ perceptions of patients. Social Science and Medicine, 50(6), 813–828.

    Article  PubMed  Google Scholar 

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Acknowledgements

This research was supported by Department of Defense grant #DAMD17-00-1-0262, National Human Genome Research Institute grant #P50HG004487, and National Cancer Institute grant #P30CA016520. Trial registration: www.clinicaltrials.gov (registration #NCT00419510). We would like to acknowledge Kiyona Brewster, MA for assistance with data collection and management and E. Paul Wileyto, Ph.D., for consultation on statistical analyses. We also thank the Penn Center for the Integration of Genetic Healthcare Technologies for assistance throughout the study. Costs for genetic testing were paid by institutional funds at the Abramson Cancer Center at the University of Pennsylvania. We thank all of the women who expressed an interest in this study and we are especially appreciative to those who participated in this research.

Conflict of Interest

The authors do not have any conflict of interests.

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Authors and Affiliations

  1. Center for Community-Based Research and Health Disparities, Department of Psychiatry and Abramson Cancer Center, University of Pennsylvania, 3535 Market Street, Suite 4100, Philadelphia, PA, 19104, USA

    Chanita Hughes Halbert

  2. Center for Community-Based Research and Health Disparities, Department of Psychiatry, University of Pennsylvania, Philadelphia, PA, USA

    Lisa Kessler, Aliya Collier, Benita Weathers & Jasmine A. McDonald

  3. Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA

    Jill Stopfer

  4. Department of Medicine and Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA

    Susan Domchek

Authors
  1. Chanita Hughes Halbert
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  2. Lisa Kessler
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  3. Aliya Collier
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  4. Benita Weathers
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  5. Jill Stopfer
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  6. Susan Domchek
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  7. Jasmine A. McDonald
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Correspondence to Chanita Hughes Halbert.

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Halbert, C.H., Kessler, L., Collier, A. et al. Low Rates of African American Participation in Genetic Counseling and Testing for BRCA1/2 Mutations: Racial Disparities or Just a Difference?. J Genet Counsel 21, 676–683 (2012). https://doi.org/10.1007/s10897-012-9485-y

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  • DOI: https://doi.org/10.1007/s10897-012-9485-y

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