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Updated: Sep 1, 2025
Targeted Next-generation Sequencing and Bioinformatics Pipeline to Evaluate Genetic Determinants of Constitutional Disease
Published on: April 4, 2018
Genomic tools for health: Secondary findings as findings to be shared
Skye A Miner1, Morgan Similuk2, Leila Jamal3
1Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD; Department of Medical Humanities and Bioethics, College of Medicine, University of Arkansas for Medical Sciences, Little Rock, AR.
Insights
Parents view secondary findings (SFs) as part of their child's overall health, not distinct information. Decisions on disclosing genetic testing results to children involve balancing the child's understanding and family needs.
Area of Science:
- Genetics
- Bioethics
- Pediatric Health
Background:
- Ethical debates surround the disclosure of secondary findings (SFs) from genetic testing to minors.
- Concerns exist regarding preserving a child's future autonomy versus disclosing potentially beneficial information.
Purpose of the Study:
- To explore parental perspectives on disclosing SFs to children.
- To understand how parents conceptualize SF disclosure within family contexts.
Main Methods:
- Semistructured interviews were conducted with 30 families (40 parents).
- Participants' children were part of a genetic sequencing protocol that returned results by default.
Main Results:
- Parents did not view SFs as separate health information but as integral to their child's overall health.
- Disclosure decisions were based on the child's comprehension and other family members' need to know.
Conclusions:
- Parental decision-making for SF disclosure is complex, involving child comprehension and family dynamics.
- Disclosure of SFs should be reconceptualized to align with families' lived experiences and preferences.
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 found that parents did not routinely conceptualize SFs as distinctive health information. Rather parents saw this information as part of their child's overall health. To make decisions about disclosure, parents weighed their child's ability to understand the SF information and their other family member's need to know.
Conclusion:
Because most families desired SF information, we argue that disclosure of SF be reconceptualized to reflect the lived experiences of those who may receive this information.
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