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Updated: Jul 16, 2025
FISH for Pre-implantation Genetic Diagnosis
Published on: February 23, 2011
Ethical Aspects of Pediatric Genetic Care: Testing and Treatment
Kelly E Ormond1, Alessandro Blasimme2, Effy Vayena2
1Department of Health Sciences and Technology, Health Ethics & Policy Lab, ETH Zurich. Hottingerstrasse 10, Zurich 8092, Switzerland; Department of Genetics and Stanford Center for Biomedical Ethics, Stanford University School of Medicine.
Insights
Pediatric providers face ethical dilemmas with genetic diseases, including informed consent for genetic testing and new treatments like gene therapy. These issues impact patient autonomy, psychological well-being, and family identity.
Area of Science:
- Pediatric Healthcare Ethics
- Genetic Medicine Ethics
Background:
- Pediatric healthcare providers frequently encounter ethical challenges when caring for children and families affected by genetic diseases.
- These challenges encompass traditional pediatric ethical concerns alongside novel issues introduced by genetic advancements.
Purpose of the Study:
- To outline the spectrum of ethical issues encountered by pediatric health care providers in the context of genetic diseases.
- To highlight the evolving ethical considerations surrounding genetic testing, predictive testing in childhood, and emerging genetic therapies.
Main Methods:
- This study is a conceptual review and ethical analysis.
- It synthesizes existing literature and ethical frameworks relevant to pediatric genetic care.
Main Results:
- Ethical issues range from surrogate decision-making and end-of-life care to informed consent complexities for genetic testing.
- Genetic testing introduces concerns regarding psychological impact, privacy, potential discrimination, and a child's autonomy in delaying testing.
- Novel treatments like gene therapy and gene editing present unique challenges related to personal and familial identity.
Conclusions:
- Pediatric providers must navigate complex ethical landscapes shaped by genetic disease and advanced genetic technologies.
- Addressing informed consent, patient autonomy, and the psychosocial impact of genetic information is crucial.
- The implications of gene therapies and gene editing on identity require careful consideration in clinical practice.
Abstract:
Pediatric health care providers caring for patients and families with genetic disease will encounter a range of ethical issues. These include traditional pediatric health care issues, such as surrogate decision making and end-of-life care. Genetic testing raises the importance of informed consent for potential risks that move beyond the oft discussed physical risks and into longer term concepts such as psychological impact, privacy and potential discrimination. Predictive testing in childhood also raises questions of whether the child has an autonomy interest in delaying testing until they have decision making capacity to do so on their own. And finally, treatments including gene therapies and gene editing, may raise issues of identity for families dealing with genetic disease.
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