Moving to the Middle Ground : Redefining Genomic Utility to Expand Understanding of Familial Benefit
© 2024 by The Hastings Center. All rights reserved..
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.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2024 |
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| Erschienen: |
2024 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:46 |
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| Enthalten in: |
Ethics & human research - 46(2024), 1 vom: 20. Jan., Seite 43-48 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Brothers, Kyle B [VerfasserIn] |
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| Links: |
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| Themen: |
Clinical utility |
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| Anmerkungen: |
Date Completed 22.01.2024 Date Revised 22.01.2024 published: Print Citation Status MEDLINE |
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| doi: |
10.1002/eahr.500199 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| 520 | |a 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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| 700 | 1 | |a Cadigan, R Jean |e verfasserin |4 aut | |
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