Quality of life drives patients' preferences for secondary findings from genomic sequencing.

ABSTRACT: There is growing impetus to include measures of personal utility, the nonmedical value of information, in addition to clinical utility in health technology assessment (HTA) of genomic tests such as genomic sequencing (GS). However, personal utility and clinical utility are challenging to define and measure. This study aimed to explore what drives patients' preferences for hypothetically learning medically actionable and non-medically actionable secondary findings (SF), capturing clinical and personal utility; this may inform development of measures to evaluate patient outcomes following return of SF. Semi-structured interviews were conducted with adults with a personal or family cancer history participating in a trial of a decision aid for selection of SF from genomic sequencing (GS) ( www

SUBMITTER: Mighton C 

PROVIDER: S-EPMC7609335 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature