Women carrying inherited cancer gene mutations are routinely having their healthy ovaries, fallopian tubes, and wombs removed—yet this practice has barely been studied or publicly discussed. This matters because up to 1 in 10 cancers stem from heritable genetic mutations, and conditions like BRCA and Lynch Syndrome affect 1 in 200 people. While media coverage focuses on breast cancer and mastectomies, most female carriers also undergo gynaecological risk-reducing surgeries (GRRSs) as the standard NHS preventive procedure—despite a lack of high-quality research on less invasive alternatives and no nationally agreed standards of care. No previous research has examined how GRRSs become normalised, or challenged, both inside and outside the clinic. If successful, this project could reshape clinical practice and public discourse. By mapping how GRRSs are discussed on social media, within NHS genomic hubs, and by patients themselves, the team will co-produce a report for NHS Genomic Hubs and the UK Cancer Genetics Group. This could lead to more inclusive communication, better-informed consent, and potentially less invasive options for women managing gynaecological cancer risk—quietly improving a system that currently operates largely out of public view.
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Up to 1 in 10 cancers are caused by heritable genetic mutations (Cancer Research UK, 2024). Together, the two most common related conditions - BRCA and Lynch Syndrome - affect 1 in 200 people (NHS, 2024b; NHS England, 2024b) and are a key target of the NHS ‘Long Term Plan’ to increase early cancer diagnosis via predictive genetic testing and personalised medicine (NHS, 2024). Public debate and media coverage rarely cover these conditions beyond BRCA narratives of breast cancer and prophylactic mastectomies (Henderson & Kitzinger, 1999). Yet, most healthy female carriers also undergo ‘gynaecological risk-reducing surgeries’ (GRRSs) - the removal of healthy ovaries, fallopian tubes and/or womb (e.g., NIHR, 2021). In fact, amidst the lack of both high-quality research on less invasive practices (Snowsill et al., in press) and nationally-agreed standards of care (Ryan et al., 2020), GRRSs are the standard preventive procedure in NHS clinical practice and public campaigning (e.g., NHS East Genomics, 2023). Despite their scarce visibility in public discourse, uncertain context and huge implications for women’s life, no research has explored how GRRSs are normalised (or challenged) in and outside the clinic: How are GRRSs addressed in wider public discourses? How are GRRSs framed and performed as routine clinical practice in the NHS context? What is the lived experience of undertaking or rejecting GRRSs? We aim to: A. unveil societal (cultural and clinical) dynamics shaping women’s health in the context of personalised medicine; B. expand specialist and lay understandings of prevention for bodies ‘at genetic risk’; C. draw on lived experiences to inform public discourse and clinical practice related to managing heightened gynaecological cancer risk. Focusing on BRCA and Lynch Syndrome, the project will provide unprecedented insight into current understandings, practices and implications of cancer predictive genetics for women's health, contributing to medical sociology, sociology of the new genetics, sociology of the body, cultural studies and platform studies. By combining digital, critical and participatory techniques, it will break new methodological grounds in the study of health, illness and care. Working with Lynch Syndrome UK, National Hereditary Breast Cancer Helpline, The Eve Appeal and Peaches Womb Cancer Trust (partners), along with patients, clinicians and advocates (advisory board, patient-only panel), we will connect with wider publics and shape inclusive clinical practice. Work packages will be aim-oriented and objective-driven: ? Aims A, B Objective1. To map wider public discourses and cultural influences. We will collect relevant content from X, YouTube, Instagram, Facebook and TikTok and combine text analytics and multimodal discourse analysis. Objective2. To provide insight into clinical practices. We will develop a critical discourse analysis of relevant guidance produced by the seven NHS genomic hubs and semi-structured interviews with three practitioners from each hub. Objective3. To provide insight into lived experiences. We will combine photovoice and elicitation techniques to conduct 40 narrative interviews with carriers. ? Aims B, C Objective4. To engage and inform publics. Through our partners, website and three social media accounts, we will share ongoing progress and findings. Drawing on Objective3., we will organise an exhibition and a digital animation showcasing a range of first-person stories of coping with gynaecological cancer risk. Objective5. To shape inclusive communication in/about clinical practice. With the advisory board and an ad-hoc patient-only panel, we will co-produce a report for the NHS Genomic Hubs and the UK Cancer Genetics Group.
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