NDLI: Development of a culturally tailored genetic counseling booklet about hereditary breast and ovarian cancer for Black women.

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

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

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Permuth-Wey, Jennifer Vadaparampil, Susan Rumphs, Alnecia Kinney, Anita Yeomans Pal, Tuya
Description	Country affiliation: United States Author Affiliation: Permuth-Wey J ( Department of Epidemiology and Genetics, H Lee Moffitt Cancer Center and Research Institute, Tampa, Florida 33612, USA.)
Abstract	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.
File Format	HTM / HTML
ISSN	15524825
Issue Number	4
Volume Number	152A
e-ISSN	15524833
Journal	American Journal of Medical Genetics Part A
Language	English
Publisher	Wiley-Blackwell
Publisher Date	2010-04-01
Publisher Place	United States
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Discipline Human Discipline Genetics African Continental Ancestry Group Genetics Breast Neoplasms Ethnology Genetic Counseling Genetic Predisposition To Disease Ovarian Neoplasms Pamphlets Advisory Committees Education Community Health Services Feedback Female Humans Male Pedigree Journal Article Research Support, Non-u.s. Gov't
Content Type	Text
Resource Type	Article
Subject	Genetics Genetics (clinical)

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