Harmful BRCA1 and BRCA2 (breast cancer susceptibility genes 1 and 2) mutations greatly increase a woman’s lifetime risk of developing breast and ovarian cancers. Women with strong family histories of these cancers may attend genetic counselling, undergo genetic testing, and receive treatment if appropriate, but which women can access and ultimately choose to use these services may differ across cancer genetics communities.

This project examines ethical issues surrounding access to care for harmful BRCA1 and BRCA2 mutations, with particular emphasis on how patients’ experiences of cancer genetic services might be influenced by how genetics stakeholders (e.g. clinicians, patients, patient advocacy groups, policymakers, insurers, laboratory researchers, community leaders, etc.) interact in their community. Rigorous ethical analysis will be applied to theoretical research (literature review and analysis of UK and US professional guidelines, policy documents, and legal rulings) and empirical case study research on stakeholders in four geographically distinct cancer genetics communities (Oxford and Southampton in the UK, and Cambridge/Boston and Baltimore/Washington DC in the US).

Results will be developed into practical outputs such as patient and provider education materials, policy suggestions for how policymakers and clinicians might address specific barriers to care, and academic manuscripts on access to care.