Genomic tools for health: Secondary findings as findings to be shared.

ABSTRACT:

Purpose

Whether and how to disclose secondary finding (SF) information to children is ethically debated. Some argue that genetic testing of minors should be limited to preserve the child's future autonomy. Others suggest that disclosure of SFs can occur if it is in the best interests of the child. However, the ways that parents conceptualize and weigh their child's future autonomy against the interests of their child and other family members are unknown.

Methods

To explore how parents understand SF disclosure in the context of their child and other family members' lives, we conducted semistructured interviews with 30 families (40 parents in total). All parents had children who were enrolled in a genetic sequencing protocol that returned results by default.

Results

We

SUBMITTER: Miner SA 

PROVIDER: S-EPMC9643624 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature