Personal utility in genomic testing: a systematic literature review.

Area of Science:

• Genomic Medicine
• Bioethics
• Psychology

Background:

• Personal utility in genomic testing refers to non-health-related outcomes.
• A systematic delineation of personal utility is currently lacking.
• This gap hinders the full appreciation of genomic testing's broader impact.

Purpose of the Study:

• To systematically identify and categorize the empirical elements of personal utility from genomic testing.
• To create an inventory of personal utility outcomes reported in the literature.
• To inform pre-test counseling and future research on the value of genomic testing.

Main Methods:

• Systematic review of peer-reviewed literature from January 2003 to August 2016.
• Inclusion criteria: English language, empirical evidence of non-health-related outcomes.
• Iterative coding of identified outcomes into unique domains.

Main Results:

• 31 studies met the inclusion criteria from 551 abstracts.
• 15 distinct elements of personal utility were identified.
• These elements were organized into four domains: affective, cognitive, behavioral, and social.

Conclusions:

• Personal utility encompasses affective, cognitive, behavioral, and social outcomes of genomic testing.
• These domains can guide pre-test counseling, helping patients understand potential non-clinical benefits.
• The identified elements provide a foundation for future research on the prevalence and significance of personal utility.