Eur J Med Genet. 2018 Dec 11. pii: S1769-7212(18)30405-1. doi: 10.1016/j.ejmg.2018.12.006. [Epub ahead of print]
Black and Minority Ethnic women's decision-making for risk reduction strategies after BRCA testing: Use of context and knowledge.
Within the field of breast cancer care, women concerned about their family history are offered genetic testing and subsequent treatment options based on several factors which include but are not limited to personal and family cancer disease histories and clinical guidelines. Discussions around decision-making in genetics in Black and Minority Ethnic (BME) groups are rarely documented in literature, and information regarding interactions with genetics services is usually discussed and linked to lack of scientific knowledge. As such, counselling sessions based only on scientific and medical information miss out the many reasons participants consider in making health decisions, information which can be used to encourage BME women to engage in cancer genetics services. 10 BME women with a mixed personal and family history of breast and ovarian cancer backgrounds, were interviewed in a study exploring issues of knowledge about familial breast cancer syndromes, to understand how they created and used familial knowledge for health decisions, with a particular focus on attitudes towards risk reducing strategies. Study results show that our participants are not unique in the ways they make decisions towards the use of cancer genetics and risk reduction strategies and as such, there are no specific ethnically defined pathways for decision-making. Our participants demonstrated mixed biomedical, social and individual cultural reasons for their decision-making towards risk reduction surgeries and treatment options which are similar to women from different ethnicities and are individual rather than group-specific. Narratives about suspicion of scientific utility of genetic knowledge, the perceived predictive value of mutations for future cancers or the origin of mutations and family disease patterns feature heavily in how participants evaluated genetic information and treatment decisions. The diversity of results shows that our participants are interested in engaging with genetic information but use multiple sources for evaluating the extent of involvement in genetic services and the place of genetic information and treatment options for themselves and their families. Genetic information is considered within various bio-social scenarios before decision-making for risk reduction is undertaken. BME women are shown to undertake evaluative processes which clinicians are encouraged to explore for better patient support. Continuing to focus on links between superficial and un-representative meanings of ethnicity, ethnic identity and attitudes and behaviours by only searching for differences between ethnic groups, are unhelpful in further understanding how women from those diverse backgrounds make decisions towards risk reduction interventions. Future research must find ways of investigating and understanding populations in ways that are not focussed solely on ethnic differences but on how meaning is created out of social circumstances and experiences.