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

Kyle B Brothers; Greg M Cooper; Katelyn C McNamara; Amy A Lemke; Josie Timmons; Carla A Rich; R Jean Cadigan; Roselle S Ponsaran; Aaron J Goldenberg

doi:10.1002/eahr.500199

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

Ethics Hum Res. 2024 Jan-Feb;46(1):43-48. doi: 10.1002/eahr.500199.

Authors

Kyle B Brothers¹, Greg M Cooper², Katelyn C McNamara³, Amy A Lemke⁴, Josie Timmons⁵, Carla A Rich⁶, R Jean Cadigan⁷, Roselle S Ponsaran⁸, Aaron J Goldenberg⁹

Affiliations

¹ Professor of pediatrics at the University of Louisville and the chief scientific officer for the Norton Children's Research Institute.
² Faculty investigator at the HudsonAlpha Institute for Biotechnology.
³ Research coordinator at Norton Children's Research Institute and a physical therapist at Norton Children's Hospital.
⁴ Associate professor of pediatrics at the University of Louisville and the director for community engaged research at Norton Children's Research Institute.
⁵ Graduate student in the Women's, Gender and Sexuality Studies program at the University of Louisville.
⁶ Senior research coordinator at Norton Children's Research Institute.
⁷ Professor of social medicine and a core faculty member in the Center for Bioethics at the University of North Carolina, Chapel Hill.
⁸ Senior research associate and assistant research director for the Department of Bioethics at Case Western Reserve University School of Medicine.
⁹ Professor, the research director, and the vice chair in the Department of Bioethics & Medical Humanities at Case Western Reserve University School of Medicine.

PMID: 38240400
DOI: 10.1002/eahr.500199

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.

Keywords: clinical utility; genomic technologies; human research ethics; personal utility; translational bioethics.

MeSH terms

Communication Disorders*
Genomics
Humans
Mental Health*
Parents

Abstract

MeSH terms

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