Exploring patient deliberation prior to predictive genetic testing in the absence of immediate clinical utility

Introduction: Some patients appear to ‘know’ whether they wish to have a genetic test or not, whilst others deliberate extensively before deciding. Little is understood about how patients deliberate such decisions. Previous research has focused on the result of the deliberation process, but little attention has been paid to the process of arriving at a decision itself and the role medical and lifeworld frames play in this deliberation. Our research explored both the deliberation and eventual decision made by patients at risk of Huntington’s disease.Methods: We recruited 15 patients who were considering predictive testing for Huntington’s disease from four UK regional genetics services. We gathered qualitative data from patients’ clinical consultations and reflective diaries to explore deliberation and patient interviews to explore decisions. We took an ethnographic approach to consultations, applied discourse analysis to clinic consultations and reflective diaries, and account analysis to the final interview with participants.Results: Our findings show how consultations, discussions with others, misconceptions, and information seeking influence four key areas: 1. Patient knowledge of the options available; 2. Forecasting of emotions regarding different options; 3. Imagined futures and 4. Hypothetical scenarios (if/then). We compared clinical consultations with reflective diaries to further explore deliberation inside and outside the clinical appointment.Conclusion: Our findings illustrate how medical frames sit alongside patient lifeworld frames and how this influences deliberation and shared decision making. We make recommendations regarding the development of decision support tools for use in clinical practice.ESRC Grant ES/R003092/1