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Assessment of Dependence in Activities of Daily Living Among Older Patients in an Acute Care Unit
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How does personal utility depend on clinical setting? Evidence from 3 cohorts.

Elise Poole1, Stephanie Luca1, Daniel Assamad1,2

  • 1Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.

Genetics in Medicine Open
|October 15, 2025
PubMed
Summary

Understanding the personal utility of genetic testing is crucial. This study reveals that patient values and preferences for genetic testing differ across clinical settings, necessitating tailored assessments.

Keywords:
Clinical geneticsGenetic testingOncologyPersonal utilityPrenatal care

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Area of Science:

  • Genetics
  • Medical Sociology
  • Patient-Reported Outcomes

Background:

  • Evidence of personal utility is vital for clinical care, funding, and policy decisions regarding genetic testing.
  • Patient-oriented values and preferences significantly influence the perceived utility of genetic testing.

Purpose of the Study:

  • To explore how patient values and preferences for genetic testing vary across different clinical settings.
  • To inform the development of a comprehensive personal utility index for genetic testing.

Main Methods:

  • Recruited parents from pediatric clinical genetics, pediatric oncology, and prenatal care settings.
  • Conducted semi-structured interviews to understand the meaning and relevance of personal utility domains.
  • Utilized deductive coding to identify shared and unique elements of utility across diverse cohorts.

Main Results:

  • Identified five key personal utility domains: cognitive, medical management, affective, behavioral, and social.
  • Common elements included enhanced understanding of a child's condition and contribution to scientific knowledge.
  • Unique elements emerged: support services (genetics), cancer risk understanding (oncology), and pregnancy decisions (prenatal).

Conclusions:

  • Personal utility of genetic testing encompasses shared and unique elements across different clinical contexts.
  • Assessment of personal utility should be tailored to specific clinical settings and patient populations.
  • Findings support the development of a nuanced personal utility index for genetic testing.