Rapid Challenges: Ethics and Genomic Neonatal Intensive Care

NICUs are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine's "critical application," providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple centers worldwide hav...

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Bibliographic Details
Published in:Pediatrics (Evanston) 2019-01, Vol.143 (Suppl 1), p.S14-S21
Main Authors: Gyngell, Christopher, Newson, Ainsley J, Wilkinson, Dominic, Stark, Zornitza, Savulescu, Julian
Format: Article
Language:English
Subjects:
Bioethical Issues
Clinical Decision-Making - ethics
Environmental effects
Ethical standards
Ethics
Exploration
Genomics
Genomics - ethics
Health Care Rationing - economics
Health Care Rationing - ethics
Humans
Infant, Newborn
Intensive care
Intensive Care Units, Neonatal
Intensive Care, Neonatal - economics
Intensive Care, Neonatal - ethics
Medical ethics
Neonatal care
Neonates
Newborn babies
Object Attachment
Parent-Child Relations
Parental Consent - ethics
Parents
Pediatrics
Resource Allocation - economics
Resource Allocation - ethics
Whole Genome Sequencing - economics
Whole Genome Sequencing - ethics
Whole Genome Sequencing - methods
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Summary:NICUs are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine's "critical application," providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple centers worldwide have now demonstrated the clinical utility and cost-effectiveness of rapid genomic sequencing in this setting, paving the way for widespread implementation. However, the introduction of this potentially powerful tool for predicting future impairment in the NICU also raises profound ethical challenges. Developing models of good practice that incorporate the identification, exploration, and analysis of ethical issues will be critical for successful implementation. In this article, we analyze 3 such issues: (1) the value and meaning of gaining consent to a complex test in a stressful, emotionally charged environment; (2) the effect of rapid diagnosis on parent-child bonding and its implications for medical and family decisions, particularly in relation to treatment limitation; and (3) distributive justice (ie, whether the substantial cost and diversion of resources to deliver rapid genomic testing in the NICU can be justified).
ISSN:0031-4005
1098-4275
DOI:10.1542/peds.2018-1099D