New Genetics, Same Old Surgeries? (NeGen-SOS) is a research project that aims to explore and improve communication and experiences of prevention for individuals with a genetic risk of gynaecological cancer.
Current healthcare debates and policies, like the 2026 National Cancer Plan for England, increasingly focus on routinising predictive genetics to build preventative pathways and healthier societies. However, as a society, we are largely unfamiliar with the implications of these initiatives for lived experiences of health, illness and prevention. NeGen-SOS is exploring how these policies and practices are articulated in public discourse and experienced by those diagnosed with a genetic risk of having cancer earlier and more often than the average population. We are focusing on women’s health because this is where knowledge is most scarce.
The two most common conditions that increase cancer risk are linked to BR(east)CA(ncer) and Lynch Syndrome genetic mutations, which are identified via genetic testing (predictive genetics) and can be passed from parents to children. Public debate and media coverage rarely cover these conditions beyond BRCA narratives of breast cancer and preventative mastectomies. Yet, most healthy female carriers also undergo ‘gynaecological risk-reducing surgeries’ – the removal of healthy ovaries, fallopian tubes and/or womb. Despite their scarce visibility in public discourse, uncertain context and huge implications for women’s lives, we know very little about how these practices are normalised (or challenged) in and outside the clinic.
In this project, we are researching how gynaecological risk reducing surgeries are covered in public discourse, performed in the clinic and experienced by carriers of BRCA and Lynch Syndrome genetic mutations.
NeGen-SOS is funded by the UK Economic and Social Research Council and will run until April 2029.