Three possible futures: patient decision making regarding predictive genetic testing in the clinical genetics setting where there is little or no current utility

Abstract

Some patients appear to ‘know’ that they wish to have a test or not, whilst others deliberate the decision at length. Little is understood regarding how patients deliberate their decision to undergo genetic testing. When making these complex decisions, patients are aiming to resolve ambivalence by weighing in the balance three possible futures – 1) not to have the test and to live with the uncertainty of not knowing their status, 2) having the test and receiving a positive result, and 3) having the test and receiving a negative result. Our aim was to explore how these three futures are constructed. We gathered qualitative data from clinical consultations, patient’s reflective diaries and patient interviews from patients considering testing for conditions such as, Huntington’s Disease, BRCA1/2 and Motor Neurone Disease. Our findings explore how consultations, discussions with others, misconceptions, and information seeking influence the shaping of these three possible futures. We compare health conditions and data sources to further compare deliberation in clinic and outside the clinical appointment. We discuss our findings in relation to resolving ambivalence through imagining possible futures as a central technique in Motivational Interviewing used in the field of behaviour change. Finally, we make recommendations regarding the development of decision support tools for use in clinical practice. 5 keywords: Decision, deliberation, ambivalence, predictive genetic testing, imagined futures, uncertainty. 5 bibliographic references: Branson, D. C. & Bixby Radu, M. Do Qualitative Researchers Experience Vicarious Trauma? And, does it Matter? Journal of Sociology and Social Work. 2018;6(1). Elwyn, G, & Miron-Shatz, T. (2010). Deliberation before determination: The definition and evaluation of good decision making. Health Expectations, 13(2), 139–147. Mason, P. (2019). Health Behavior Change: A Guide for Practitioners. London, Elsevier. Peters, S.A., Laham, S.M., Pachter, N., & Winship, I.M. (2013). The future in clinical genetics: affective forecasting biases in patient and clinician decision making. Clinical Genetics, 85, 4. Reich, T. and S. Wheeler (2016). "The good and bad of ambivalence: Desiring ambivalence under outcome uncertainty." J Pers Soc Psychol 110: 493-508.

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ORCID for Lisa Ballard: orcid.org/0000-0003-1017-4322

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