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Published on: April 4, 2018
Consent for rapid genomic sequencing for critically ill children: legal and ethical issues
Christopher Gyngell1,2,3, Fiona Lynch4, Zornitza Stark5,4,6
1Department of Paediatrics, University of Melbourne, Melbourne, Australia. christopher.gyngell@mcri.edu.au.
Insights
Rapid genomic sequencing (RGS) for critically ill children with rare diseases presents ethical dilemmas regarding parental consent. This study explores when overriding parental refusal for RGS may be ethically justified to improve patient outcomes.
Area of Science:
- Medical Ethics
- Genomic Medicine
- Pediatric Critical Care
Background:
- Rapid genomic sequencing (RGS) is increasingly used in pediatric critical care for rare diseases.
- Its expanding use raises significant ethical questions regarding informed consent and parental autonomy.
- Specific challenges arise concerning the degree of consent and potential overrides of parental decisions.
Purpose of the Study:
- To examine the ethical and legal frameworks for consent in RGS for critically ill children.
- To explore circumstances where overriding parental refusal of RGS might be ethically permissible.
- To inform the development of guidelines for consent in time-sensitive RGS cases.
Main Methods:
- Review of legal frameworks governing genomic sequencing consent.
- Application of the 'Zone of Parental Discretion' ethical tool.
- Analysis of two case studies involving critically ill children and RGS decisions.
Main Results:
- The degree of consent for RGS should consider test complexity and potential impact on patient outcomes.
- Ethical justification may exist for performing RGS against parental wishes in specific contexts.
- Current consent guidelines require adaptation for time-sensitive RGS in critically ill children.
Conclusions:
- Ethical considerations for RGS in critically ill children necessitate a nuanced approach to consent.
- Parental autonomy in RGS decisions may be overridden under specific, ethically defined circumstances.
- Further research is needed to operationalize exceptions to consent for time-sensitive RGS.
Abstract:
Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents' decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal frameworks on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how 'time-sensitive' exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children.
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