Defining personal utility in genomics: A Delphi study

Abstract excerpt

BACKGROUND: Individual genome sequencing results are valued by patients in ways distinct from clinical utility. Such outcomes have been described as components of "personal utility," a concept that broadly encompasses patient-endorsed benefits, that is operationally defined as non-clinical outcomes. No empirical delineation of these outcomes has been reported. AIM: To address this gap, we administered a Delphi...

Topics

Share this publication in a Topic to start or enrich a Post.

• Share to Ethics in Clinical Research
• Share to Genomics and Rare Diseases
• Share to Health Systems, Economic Evaluations, Quality of Life