Rebecca Mueller

Despite the moniker “precision medicine,” genetic diagnoses are often imprecise with respect to prognosis. In a period when prognoses are evolving in lockstep with advances in genetic diagnostics and therapeutics, it is critical that clinicians and researchers consider how prognosis is communicated beyond the moment of diagnosis. Research has shown that genetic diagnoses are described differently in pre- and postnatal contexts, but we know relatively little about how patients and families make sense of prognostic information as affected children grow up. Here, I draw on research and personal narratives to describe how prognostic information impacts individuals' conceptions of the future. A deeper understanding of how patients and families view prognosis is important because parents may need support as prognostic conversations arise and because perceptions of prognosis may influence ideas about the future, psychological health, decisions, and planning. By exploring how specific ideas about an individuals' future take hold, clinicians and researchers may begin to identify the benefits, harms, and accuracy of varied sources of prognostic information, opening new areas of bioethical investigation. In closing, I propose prognostic imagination as a useful concept for considering how patients and families experience prognostic information amidst therapeutic innovations and evolving futures.

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