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Giving adolescents a voice: the types of genetic information adolescents choose to learn and why

Authors :
Melanie F. Myers
Cynthia A. Prows
Josie Pervola
Michelle L. McGowan
Source :
Genetics in Medicine. 21:965-971
Publication Year :
2019
Publisher :
Elsevier BV, 2019.

Abstract

The American College of Medical Genetics and Genomics supports parents’ opting in or out of secondary analysis of 59 genes when their child has clinical exome/genome sequencing. We explored the reasons adolescents choose to learn certain types of results and the reasons they want to involve or not involve parents in decision-making. Adolescents recruited without clinical indication were offered independent, followed by joint choices with a parent to learn genomic results. After making independent choices, adolescent/parent dyads were interviewed to explore the reasons for their choices. Interviews were audio-recorded and transcribed. The constant comparative method was used to analyze 64 purposefully selected transcripts that included 31 from adolescents who excluded some or all potential results. Three major themes informed adolescents’ choices: (1) actionability of information, (2) knowledge seeking, and (3) psychological impact. Of adolescents who independently excluded some conditions (n=31), 58% changed their initial choices during the joint interview due to parental influence or improved understanding. Nearly all adolescents (98%) wanted to be involved in the decision-making process, and 53% wanted to make choices independently. Our findings contribute empirical evidence to support the refinement of professional guidelines for adolescents’ engagement and preferences in genetic testing decisions.

Details

ISSN :
10983600
Volume :
21
Database :
OpenAIRE
Journal :
Genetics in Medicine
Accession number :
edsair.doi.dedup.....0eabcb2a52f42d745b3ea778372d4ee0
Full Text :
https://doi.org/10.1038/s41436-018-0320-1