Skip to main content

Advertisement

SpringerLink
Log in

What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

  • Published:
Journal of Cancer Education Aims and scope Submit manuscript

Abstract

Black women are just as likely to have hereditary breast cancer mutations as White women, yet their participation in genetic counseling and testing is substantially lower. This study sought to describe Black women’s awareness and perceptions of BRCA1/2 testing and to identify barriers and motivators to seeking BRCA1/2 services. Fifty intercept interviews were conducted with Black women in public places (a professional women’s basketball game, a grocery store, a faith-based community event, and the waiting area at a breast care clinic) in Washington, DC. More than half of the women (54 %) were aware that genetic tests to determine risk for certain breast and ovarian cancers exist, but the majority (88 %) had never heard of BRCA1/2, specifically. After hearing a description of BRCA1/2 genetic markers, 82 % stated that they would agree to BRCA1/2 testing if it was offered to them. Perceived advantages of testing included cancer prevention and the ability to share information with family members. Perceived disadvantages included emotional distress associated with identification of the mutation and the potential misuse of results to deny healthcare or employment. Physician recommendation, self-care, and known family history were among the motivators for testing. Women listed possible media and venues for intervention. In spite of low rates of BRCA1/2 testing in the Black community, women in this sample were open to the idea. Interventions that address barriers and include cultural tailoring are necessary.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Thompson D, D F. Easton and Breast Cancer Linkage Consortium (2002) Cancer incidence in BRCA1 mutation carriers. J Natl Cancer Inst

  2. Anonymous (1999) Cancer risks in BRCA2 mutation carriers. The Breast Cancer Linkage Consortium. J Natl Cancer Inst

  3. Halbert CH, Kessler LJ, Mitchell E (2005) Genetic testing for inherited breast cancer risk in African Americans. Cancer Investigation

  4. Pal T, Permuth-Wey J, Holtje T, Sutphen R (2004) BRCA1 and BRCA2 mutations in a study of African American breast cancer patients. Cancer Epidemiology, Biomarkers & Prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology

  5. NCCN (2014) NCCN Clinical Practice Guidelines in Oncology Genetic/Familial <br />High-Risk assessment: breast and ovarian version 1

  6. Armstrong K, Weiner J, Weber B, Asch DA (2003) Early adoption of BRCA1/2 testing: who and why. Genet Med. doi:10.1097/01.GIM.0000056829.76915.2A

    PubMed  Google Scholar 

  7. Armstrong K, Weber B, Stopfer J, Calzone K, Putt M, Coyne J, Schwartz JS (2003) Early use of clinical BRCA1/2 testing: associations with race and breast cancer risk. Am J Med Genet A

  8. U.S. Preventive Services Task Force (2013) Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: clinical summary of USPSTF recommendation AHRQ publication no. 12-50164-EF-3

  9. Susswein LR, Skrzynia C, Lange LA, Booker JK, Graham ML 3rd, Evans JP (2008) Increased uptake of BRCA1/2 genetic testing among African American women with a recent diagnosis of breast cancer. J Clin Oncol Off J Am Soc Clin Oncol. doi:10.1200/JCO.2007.10.6377

    Google Scholar 

  10. Siegel R, Naishadham D, Jemal A (2012) Cancer statistics, 2012. CA: Cancer J Clin. doi:10.3322/caac.20138

    Google Scholar 

  11. Maskarinec G, Sen C, Koga K, Conroy SM (2011) Ethnic differences in breast cancer survival: status and determinants. Women’s Health (London, England). doi:10.2217/whe.11.67

  12. Newman LA, Griffith KA, Jatoi I, Simon MS, Crowe JP, Colditz GA (2006) Meta-analysis of survival in African American and white American patients with breast cancer: ethnicity compared with socioeconomic status. J Clin Oncol Off J Am Soc Clin Oncol. doi:10.1200/JCO.2005.03.3472

    Google Scholar 

  13. Newman LA (2005) Breast cancer in African-American women. The Oncologist

  14. Elledge RM, Clark GM, Chamness GC, Osborne CK (1994) Tumor biologic factors and breast cancer prognosis among white, Hispanic, and black women in the United States. J Natl Cancer Inst

  15. Haffty BG, Silber A, Matloff E, Chung J, Lannin D (2006) Racial differences in the incidence of BRCA1 and BRCA2 mutations in a cohort of early onset breast cancer patients: African American compared to white women. J Med Genet

  16. Pal T, Vadaparampil S, Betts J, Miree C, Li S, Narod SA (2008) BRCA1/2 in high-risk African American women with breast cancer: providing genetic testing through various recruitment strategies. Genetic Testing

  17. Hughes C, Peterson SK, Ramirez A, Gallion KJ, McDonald PG, Skinner CS, Bowen D (2004) Minority recruitment in hereditary breast cancer research. Cancer Epidemiol Biomarkers Prev: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology

  18. Halbert, C. H., K. Brewster, A. Collier, C. Smith, L. Kessler, B. Weathers, J. E. Stopfer, S. Domchek and E. P. Wileyto. 2005. Recruiting African American women to participate in hereditary breast cancer research. J Clin Oncol: official journal of the American Society of Clinical Oncology

  19. Kinney AY, Simonsen SE, Baty BJ, Mandal D, Neuhausen SL, Seggar K, Holubkov R, Smith K (2006) Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred. Am J Med Genet A

  20. Forman AD, Hall MJ (2009) Influence of race/ethnicity on genetic counseling and testing for hereditary breast and ovarian cancer. Breast J

  21. Donovan KA, Tucker DC (2000) Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. J Behav Med

  22. Thompson HS, Valdimarsdottir HB, Jandorf L, Redd W (2003) Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Educ Couns

  23. KinneyAY, Croyle RT, Dudley WN, Bailey CA, Pelias MK, Neuhausen SL (2001) Knowledge, attitudes, and interest in breast-ovarian cancer gene testing: a survey of a large African-American kindred with a BRCA1 mutation. Prev Med

  24. Peters N, Domchek SM, Rose A, Polis R, Stopfer J, Armstrong K (2005) Knowledge, attitudes, and utilization of BRCA1/2 testing among women with early-onset breast cancer. Genet Test. doi:10.1089/gte.2005.9.48

    PubMed  Google Scholar 

  25. Singer E, Antonucci T, Van Hoewyk J (2004) Racial and ethnic variations in knowledge and attitudes about genetic testing. Genet Test. doi:10.1089/109065704323016012

    PubMed  Google Scholar 

  26. Thompson HS, Valdimarsdottir HB, Duteau-Buck C, Guevarra J, Bovbjerg DH, Richmond-Avellaneda C, Amarel D, Godfrey D, Brown K, Offit K (2002) Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiology, Biomarkers & Prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology

  27. Brawley OW, Tejeda H (1995) Minority inclusion in clinical trials issues and potential strategies. J Natl Cancer Inst. Monographs

  28. Graves KD, Christopher JL, Harrison TM, Peshkin BN, Isaacs C, Sheppard VB (2011) Providers’ perceptions and practices regarding /BRCA1/2/ genetic counseling and testing in African American women. J Genet Couns

  29. Simon MS, Petrucelli N (2009) Hereditary breast and ovarian cancer syndrome: the impact of race on uptake of genetic counseling and testing. Methods Mol Biol (Clifton, NJ)

  30. 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. JAMA: J Am Med Assoc

  31. Armstrong K, Weber B, Stopfer J, Calzone K, Putt M, Coyne J, Schwartz JS (2003) Early use of clinical BRCA1/2 testing: associations with race and breast cancer risk. Am J Med Genet A

  32. Moorman PG, Skinner CS, Evans JP, Newman B, Sorenson JR, Calingaert B, Susswein L, Crankshaw TS, Hoyo C, Schildkraut JM (2004) Racial differences in enrolment in a cancer genetics registry. Cancer Epidemiology, Biomarkers & Prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology

  33. Armstrong K, Stopfer J, Calzone K, Fitzgerald G, Coyne J, Weber B (2002) What does my doctor think? Preferences for knowing the doctor’s opinion among women considering clinical testing for BRCA1/2 mutations. Genet Test. doi:10.1089/10906570260199366

    PubMed  Google Scholar 

  34. Sankar P, Wolpe PR, Jones NL, Cho M (2006) How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet. doi:10.1159/000091484

    PubMed Central  PubMed  Google Scholar 

  35. Benkendorf JL, Reutenauer JE, Hughes CA, Eads N, Willison J, Powers M, Lerman C (1997) Patients’ attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am J Med Genet

  36. Peters N, Rose A, Armstrong K (2004) The association between race and attitudes about predictive genetic testing. Cancer Epidemiology, Biomarkers & Prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology

  37. Suther S, Kiros GE (2009) Barriers to the use of genetic testing: a study of racial and ethnic disparities. Genet Med: official journal of the American College of Medical Genetics

  38. OchoaFrongia L, Thompson HS, LewisKelly Y, DeansMcFarlane T, Jandorf L (2012) Breast and cervical cancer screening and health beliefs among African American women attending educational programs. Health Promotion Practice

  39. Russell K, Swenson MM, Skelton AM, Shedd-Steele R (2003) The meaning of health in mammography screening for African American women. Health Care for Women International

  40. Holt CL, Lukwago SN, Kreuter MW (2003) Spirituality, breast cancer beliefs and mammography utilization among urban African American women. J Health Psychol

  41. Peek ME, Sayad JV, Markwardt R (2008) Fear, fatalism and breast cancer screening in low-income African-American women: the role of clinicians and the health care system. Journal of General Internal Medicine: official journal of the Society for Research and Education in Primary Care Internal Medicine

  42. Russell KM, Perkins SM, Zollinger TW, Champion VL (2006) Sociocultural context of mammography screening use. Oncol Nursing Forum

  43. Farmer DF, Jackson SA, Camacho F, Hall MA (2007) Attitudes of African American and low socioeconomic status white women toward medical research. J Health Care Poor Underserved

  44. Fowler BA (2007) The influence of social support relationships on mammography screening in African-American women. J National Black Nurses’ Association: JNBNA.

  45. Hughes C, Fasaye GA, LaSalle VH, Finch C (2003) Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Educ Couns

  46. Schwartz MD, Hughes C, Roth J, Main D, Peshkin BN, Isaacs C, Kavanagh C, Lerman C (2000) Spiritual faith and genetic testing decisions among high-risk breast cancer probands. Cancer Epidemiology, Biomarkers & Prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology

  47. Patterson AR, Davis H, Shelby K, McCoy J, Robinson LD, Rao SK, Banerji P, Tomlinson GE (2008) Successful strategies for increasing African American participation in cancer genetic studies: hopeful signs for equalizing the benefits of genetic medicine. Community Genet. doi:10.1159/000116881

    PubMed  Google Scholar 

  48. Pal T, Rocchio E, Garcia A, Rivers D, Vadaparampil S (2011) Recruitment of black women for a study of inherited breast cancer using a cancer registry-based approach. Genet Test Mol Biomarkers. doi:10.1089/gtmb.2010.0098

    Google Scholar 

  49. Armstrong K, Weber B, Ubel PA, Guerra C, Schwartz JS (2002) Interest in BRCA1/2 testing in a primary care population. Prev Med

  50. Domchek SM, Weber BL (2006) Clinical management of BRCA1 and BRCA2 mutation carriers. Oncogene

  51. Schwartz MD, Isaacs C, Graves KD, Poggi E, Peshkin BN, Gell C, Finch C, Kelly S, Taylor KL, Perley L (2012) Long-term outcomes of BRCA1/BRCA2 testing: risk reduction and surveillance. Cancer. doi:10.1002/cncr.26294

    Google Scholar 

  52. Olsen SJ, Malvern KT, May BJ, Jenkins IL, Griffin CA (2008) Partnership with an African American sorority to enhance participation in cancer genetics research. Community Genet. doi:10.1159/000116880

    PubMed  Google Scholar 

  53. Halbert CH, Kessler L, Troxel AB, Stopfer JE, Domchek S (2010) Effect of genetic counseling and testing for BRCA1 and BRCA2 mutations in African American women: a randomized trial. Public Health Genomics

  54. Wilson RP, Freeman A, Kazda MJ, Andrews TC, Berry L, Vaeth PA, Victor RG (2002) Lay beliefs about high blood pressure in a low- to middle-income urban African-American community: an opportunity for improving hypertension control. Am J Med

  55. Miller KW, Wilder LB, Stillman FA, Becker DM (1997) The feasibility of a street-intercept survey method in an African-American community. Am J Public Health

  56. Treiman K, Freimuth V, Damron D, Lasswell A, Anliker J, Havas S, Langerberg P, Feldman R (1996) Attitudes and behaviors related to fruits and vegetables among low-income women in the WIC program. J Nutr Educ 28:149–156

    Article  Google Scholar 

  57. Huo D, Olopade OI (2007) Genetic testing in diverse populations: are researchers doing enough to get out the correct message? JAMA: J Am Med Assoc. doi:10.1001/jama.298.24.2910

    Google Scholar 

  58. Olopade OI, Fackenthal JD, Dunston G, Tainsky MA, Collins F, Whitfield-Broome C (2003) Breast cancer genetics in African Americans. Cancer. doi:10.1002/cncr.11019

    Google Scholar 

  59. Hall M, Olopade OI (2005) Confronting genetic testing disparities: knowledge is power. JAMA: J Am Med Assoc

  60. Rose AL, Peters N, Shea JA, Armstrong K (2005) Attitudes and misconceptions about predictive genetic testing for cancer risk. Community Genet. doi:10.1159/000086757

    PubMed  Google Scholar 

  61. Linden HM, Reisch LM, Hart A Jr, Harrington MA, Nakano C, Jackson JC, Elmore JG (2007) Attitudes toward participation in breast cancer randomized clinical trials in the African American community: a focus group study. Cancer Nurs. doi:10.1097/01.NCC.0000281732.02738.31

    PubMed Central  PubMed  Google Scholar 

  62. Sheppard VB, Adams IF, Lamdan R, Taylor KL (2011) The role of patient-provider communication for black women making decisions about breast cancer treatment. Psycho-Oncology. doi:10.1002/pon.1852

    PubMed  Google Scholar 

  63. Kaiser K, Rauscher GH, Jacobs EA, Strenski TA, Ferrans CE, Warnecke RB (2011) The import of trust in regular providers to trust in cancer physicians among white, African American, and Hispanic breast cancer patients. Journal of General Internal Medicine: official journal of the Society for Research and Education in Primary Care Internal Medicine

  64. Mandelblatt JS, Sheppard VB, Hurria A, Kimmick G, Isaacs C, Taylor K, et al (2010) Breast cancer adjuvant chemotherapy decisions in older women: the role of patient preference and interactions with physicians. J Clin Oncol: official journal of the American Society of Clinical Oncology

  65. Cutilli CC (2010) Seeking health information: what sources do your patients use? Orthop Nurs/National Association of Orthopaedic Nurses. doi:10.1097/NOR.0b013e3181db5471

    Google Scholar 

  66. Lowstuter KJ, Sand S, Blazer KR, MacDonald DJ, Banks KC, Lee CA, Schwerin BU, Juarez M, Uman GC, Weitzel JN (2008) Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians. Genet Med: official journal of the American College of Medical Genetics. doi:10.1097/GIM.0b013e3181837246

  67. Linden HM, Reisch LM, Hart A Jr, Harrington MA, Nakano C, Jackson JC, Elmore JG (2007) Attitudes toward participation in breast cancer randomized clinical trials in the African American community: a focus group study. Cancer Nurs. doi:10.1097/01.NCC.0000281732.02738.31

    PubMed Central  PubMed  Google Scholar 

  68. Phillips JM, Cohen MZ, Moses G (1999) Breast cancer screening and African American women: fear, fatalism, and silence. Oncol Nursing Forum

  69. Williams KP, Sheppard VB, Todem D, Mabiso A, Wulu Jr JT, Hines RD (2008) Family matters in mammography screening among African-American women age 40. J Natl Med Assoc

  70. Gullatte MM, Brawley O, Kinney A, Powe B, Mooney K (2010) Religiosity, spirituality, and cancer fatalism beliefs on delay in breast cancer diagnosis in African American women. J Relig Health. doi:10.1007/s10943-008-9232-8

    PubMed  Google Scholar 

  71. Farmer D, Reddick B, D’Agostino R, Jackson SA (2007) Psychosocial correlates of mammography screening in older African American women. Oncol Nurs Forum. doi:10.1188/07.ONF.117-123

    PubMed  Google Scholar 

  72. Fowler BA (2006) Claiming health: mammography screening decision making of African American women. Oncol Nursing Forum

  73. Sheppard VB, Wang JH, Eng-Wong J, Martin SH, Hurtado-de-Mendoza A, Luta G (2013) Promoting mammography adherence in underserved women: the telephone coaching adherence study. Contemp Clin Trials. doi:10.1016/j.cct.2013.02.005

    PubMed Central  PubMed  Google Scholar 

  74. Sheppard VB, Wallington SF, Willey SC, Hampton RM, Lucas W, Jennings Y, Horton S, Muzeck N, Cocilovo C, Isaacs C (2013) A peer-led decision support intervention improves decision outcomes in black women with breast cancer. J Cancer Educ. doi:10.1007/s13187-013-0459-z

    Google Scholar 

  75. Sadler GR, Ko CM, Wu P, Alisangco J, Castaneda SF, Kelly C (2011) A cluster randomized controlled trial to increase breast cancer screening among African American women: the black cosmetologists promoting health program. J Natl Med Assoc

  76. Russell KM, Champion VL, Monahan PO, Millon-Underwood S, Zhao Q, Spacey N, Rush NL, Paskett ED (2010) Randomized trial of a lay health advisor and computer intervention to increase mammography screening in African American women. Cancer Epidemiol Biomarkers Prev: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. doi:10.1158/1055-9965.EPI-09-0569

    Google Scholar 

  77. Hall MJ, Dignam JJ, Olopade OI (2008) Family history of pancreatic cancer in a high-risk cancer clinic: implications for risk assessment. J Genet Couns. doi:10.1007/s10897-008-9154-3

    PubMed  Google Scholar 

  78. Greenup R, Buchanan A, Lorizio W, Rhoads K, Chan S, Leedom T, King R, McLennan J, Crawford B, Kelly Marcom P, Shelley Hwang E (2013) Prevalence of BRCA mutations among women with triple-negative breast cancer (TNBC) in a genetic counseling cohort. Ann Surg Oncol. doi:10.1245/s10434-013-3205-1

Download references

Acknowledgments

The authors thank the women who participated in this study. They also acknowledge the technical assistance of Ms. Toni Michelle Harrison for data collection and Dr. Alejandra Hurtado-de-Mendoza, Ms. Minna Song, and Ms. Yvonne Jennings for manuscript preparation. This study was funded in part by Fisher Center for Familial Cancer Research 2007–01 and the American Cancer Society MRSGT 06 131 01 CPPB grants.

Author information

Authors and Affiliations

  1. Department of Social and Behavioral Sciences, Harvard School of Public Health, 401 Park Dr., Room 403-E, Boston, MA, 02215, USA

    Inez Adams

  2. Center for Innovative Kidney Care, Nephrology Section/Medicine Service, Minneapolis VA Health Care System, One Veterans Drive, Minneapolis, MN, 55417, USA

    Juleen Christopher

  3. Obstetrics, Gynecology, and Reproductive Biology, Michigan State University, 626 E. Fee Hall, East Lansing, MI, 48824, USA

    Karen Patricia Williams

  4. Department of Oncology, Breast Cancer Program, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, 3300 Whitehaven Street, Suite 4100, Northwest Washington, DC, 20007, USA

    Vanessa B. Sheppard

Authors
  1. Inez Adams
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Juleen Christopher
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Karen Patricia Williams
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Vanessa B. Sheppard
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Vanessa B. Sheppard.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Adams, I., Christopher, J., Williams, K.P. et al. What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2 . J Canc Educ 30, 344–352 (2015). https://doi.org/10.1007/s13187-014-0740-9

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13187-014-0740-9

Keywords

Search

Navigation