Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.

ABSTRACT: This article elaborates research participant perspectives on the communication of individual research results from genomic analyses. While most analyses focus on how to communicate results from the perspectives of clinicians or researchers, there is insufficient data on user perspectives and how this information may be used, valued, and interpreted by patients and their families. The concept of personal utility, which considers factors related to quality of life, including on how information may impact the person's future decisions, has been shown to be particularly relevant to understand research participant perspectives and to move beyond clinical and analytic utility factors such as mortality and morbidity. This article draws from qualitative research of research participants awaiting g

SUBMITTER: Bogaert B 

PROVIDER: S-EPMC11549069 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature