Speech therapist touching mouth during lesson with child in consulting room

Ethics & Human Research

Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit

ABSTRACT Translational research has tended to ignore the question of whether receiving a genomic diagnosis provides utility in community care contexts outside of doctors’ offices and hospitals. However, empirical research with parents has highlighted numerous ways that a genomic diagnosis might be of practical value in the care provided by teachers, physi­cal or occupational therapists, speech-language pathologists, behavior analysts, and nonphysician mental health provid­ers. In this essay, we propose a new conceptual model of genomic utility that offers the opportunity to better capture a broad range of potential implications of genomic technologies for families in various social and organizational systems. We explore crucial research directions to better understand how redefined utility might affect families and nonphysician professionals.

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