Development of a culturally tailored genetic counseling booklet about hereditary breast and ovarian cancer for black women

Jennifer Permuth-Wey, Susan Vadaparampil, Alnecia Rumphs, Anita Yeomans Kinney, Tuya Pal

Research output: Contribution to journalArticlepeer-review

13 Scopus citations


Printed educational materials (PEM) can serve as important tools to enhance and reinforce information presented during genetic counseling (GC) for BRCA1/2 testing, yet few such materials have been specifically developed for the Black community. The goal of the current study was to develop a BRCA1/2 genetic education booklet for Black women at increased risk for hereditary breast and ovarian cancer (HBOC). Investigators identified available PEM about BRCA1/2 targeted toward Blacks. To obtain possible perspectives of the target population regarding modified and newly developed materials, a Community Advisory Panel (CAP) comprising breast cancer survivors, advocates, and community leaders was convened. While the CAP felt PEM were an important adjunct to GC, the panel recommended developing materials that were more personalized and relevant to Black women. A 12-page booklet that follows the flow of a standard GC session was developed; it includes a limited amount of technical information, incorporates familiar terms and images to describe key concepts, and contains vignettes and photographs of Black women. Upon review of the newly developed booklet, CAP members agreed their input had been well implemented, and only had minor suggestions. The booklet is currently being used in a population-based study of BRCA1/2 mutations among Black women diagnosed with early-onset breast cancer. Involving members of the target community is critical to the development of culturally tailored PEM. Further evaluation of the utility of our booklet in increasing awareness and understanding of HBOC and promoting informed decision-making regarding genetic testing and medical management among Black women is needed.

Original languageEnglish (US)
Pages (from-to)836-845
Number of pages10
JournalAmerican Journal of Medical Genetics, Part A
Issue number4
StatePublished - Apr 2010
Externally publishedYes

All Science Journal Classification (ASJC) codes

  • Genetics
  • Genetics(clinical)


  • African American
  • BRCA 1/2 mutations
  • Cultural sensitivity
  • Educational materials
  • Genetic counseling

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