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Updated: Mar 8, 2026
FISH for Pre-implantation Genetic Diagnosis
Published on: February 23, 2011
Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests
Ingrid A Holm1,2,3
11 Division of Genetics and Genomics, Boston Children's Hospital , Boston, Massachusetts.
Insights
Pediatric genomic research presents complex ethical challenges, balancing parental and child autonomy with family well-being. A proposed dynamic model addresses the child
Area of Science:
- Bioethics
- Pediatric Genomics
- Clinical Research
Background:
- Genomic research in pediatrics involves intricate ethical considerations.
- Conflicting interests arise between parental autonomy and the child's best interests.
- Developing child's autonomy and comprehension add layers of complexity.
Purpose of the Study:
- To analyze the ethical landscape of pediatric genomic research.
- To explore the balance between parental and child autonomy.
- To propose a model for ethical decision-making and consent in pediatric genomic studies.
Main Methods:
- Ethical analysis of key issues in pediatric genomic research.
- Discussion of parental rights, child autonomy, and family interests.
- Development of a dynamic model for consent and return of results.
Main Results:
- Identified conflicts between parental and child autonomy.
- Highlighted the impact of genetic information on families.
- Addressed the evolving role of children in research participation and result disclosure.
Conclusions:
- Ethical pediatric genomic research requires careful consideration of developing autonomy.
- A dynamic, adaptable model is needed for consent and return of results.
- The model should accommodate varying national contexts and evolving child comprehension.
Abstract:
Nowhere are the ethical issues in genomic research more complex than in pediatrics. Balancing the sometime conflicting autonomy of the parent and the child, and the best interest of the family and the child, brings up many challenging issues. Addressing this balance, especially in the context of the child's developing maturity and comprehension, requires deep analysis and discussion. Issues discussed include the impact of genetic information on the family, parental versus the child's autonomy, the best interests of the child versus the family, potential limitations on the parents' right to know or not know information about their child, and changing role of the developing child in return of research results. Finally, a dynamic model will be proposed that takes into consideration the child's evolving role in consenting and return of results that can be adapted in different national contexts.
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