OP012: Perceptions of breast and ovarian cancer risk and genetic testing among Non-Hispanic Black women

Abstract

Non-Hispanic Black (NHB) women experience health disparities from familial and hereditary breast and ovarian cancer (HBOC) compared to other racial and ethnic groups, including 40% higher mortality from breast cancer compared to non-Hispanic White women. One potential factor in these disparities includes lower uptake of HBOC genetic testing. This study explores potential factors for the lower use of HBOC genetic testing in NHB women and their families. Understanding these factors is critical to improving uptake of HBOC testing in the NHB community and improving HBOC racial and ethnic health disparities. A national sample of NHB women with personal or family history of HBOC were recruited through patient support organizations, historically Black colleges and university sororities, professional organizations for women of African descent, and snowball sampling. Participants were interviewed using an interview guide developed by content experts and a community advisory board. Interviews were audio recorded and transcribed verbatim. Interview transcripts were qualitatively analyzed using NVivo12 according to the principles of grounded theory. Sixty-one NHB women with personal (n=37, breast; n=6, ovarian) or family history (n=14, breast; n=2, ovarian; n=2 breast/ovarian) of HBOC participated in a qualitative interview. Participants reported on their own awareness of their family history of HBOC prior to their own diagnosis and how this informed their assessment of their pre-diagnostic risk of HBOC. The impact of family culture and cohesion, including perceptions of a familial ‘culture of silence’ around the sharing of personal or family medical history were also identified as potential barriers to awareness of HBOC risk. Thirty participants with a personal history and seven participants with family history received HBOC genetic testing upon recommendation of their provider or following their own request. Those that declined HBOC genetic testing described misperceptions of HBOC inheritance or expressed a belief that such testing would not be personally beneficial. Participants were also asked to describe family members’ interest in cascade testing and their reasons for accepting or declining HBOC genetic testing. Many participants felt that their daughters would be interested in HBOC genetic testing, but that siblings and other extended family members would decline out of belief that the results would have limited personal utility to themselves and/or their offspring or that a potential positive result would result in distress and life-long worry. Family members’ education status and views on healthcare were also thought to be important factors in their decision. This study is the largest qualitative study of its kind in NHB women with a personal or family history of breast and/or ovarian cancer. These findings suggests that there are significant barriers to HBOC genetic testing in the NHB community, including cultural factors influencing risk perception and the uptake of cascade testing. Culturally sensitive community outreach on the disparate impact of breast and ovarian cancer and how genetic testing may improve NHB cancer outcomes may improve uptake of HBOC genetic testing among at-risk NHB families.