Saying No: A Biographical Analysis of Why Women with a Genetic Predisposition to Developing Breast/Ovarian Cancer Reject Risk Reducing Surgery

Molloy, D. (2016) Saying No: A Biographical Analysis of Why Women with a Genetic Predisposition to Developing Breast/Ovarian Cancer Reject Risk Reducing Surgery. Royal College of Nursing 2016 Annual International Nursing Research Conference, Edinburgh, UK, 6-8 Apr 2016.

Abstract

Title: Saying no: a biographical analysis of why women with a genetic predisposition to developing breast/ovarian cancer refuse risk reducing surgery. Background: Genetic testing for breast/ovarian cancer susceptibility aims to identify individuals at high risk of cancer and facilitate risk-reducing interventions. Risk-reducing surgery (RRS) reduces cancer risk and is the principle primary preventive intervention. Despite this, some women make what appear to be ‘anti-health’ decisions by refusing RRS. Aim: To advance an understanding of why BRCA1/2 mutation carriers say no to RRS. Methods: Denzin’s (1989) interpretive biography was combined with Dolby-Stahl’s (1985) literary folkloristic methodology to provide a contextualised narrative of the life experiences of six high risk women who said no to RRS. Results: Different understandings of risk underpinned the decision to say no. RRS was perceived as damaging the body and hence was a greater risk to self than cancer risk. Breasts and ovaries were treasured as vital body parts which could not be given up or replaced on the basis of risk. Participants shared a genetic pessimism of regret and uncertainty as they were transformed into perpetual patients awaiting their fate. Discussion: The decision to say no to RRS must be understood within social, cultural and historical contexts which shape experience. The dominant medical model for dealing with cancer risk may marginalise high risk women and paradoxically expose them to greater risk. The relationship between genetic testing and cancer prevention is not straightforward and genetic information has the potential to harm as well as help. Conclusions: The findings from this study are relevant to all nurses given the prominence of genetics in contemporary health care. It is important health care providers approach this area from the viewpoints of those directly involved since without understanding; interventions and supportive strategies may be ineffective.

• Item Type: Conference or Workshop Item
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Molloy, Dr Doreen
• Authors: Molloy, D.
• Subjects: R Medicine > RT Nursing
• College/School: College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing > Nursing and Health Care