Journal of Pediatric Psychology Advance Access originally published online on July 22, 2008
Journal of Pediatric Psychology 2009 34(6):639-647; doi:10.1093/jpepsy/jsn075
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This article appears in the following Journal of Pediatric Psychology issue: Special Issue: Psychological Aspects of Genomics and Child Health [View the issue table of contents]
From Genetics to Genomics: Ethics, Policy, and Parental Decision-making
1Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital, 2Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine, and 3Department of Pediatrics, Department of Medicine, and Department of Surgery, MacLean Center for Clinical Medical Ethics, University of Chicago
All correspondence concerning this article should be addressed to Benjamin Wilfond, MD, Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital, Metropolitan Park West M/S: MPW 8-2, 1100 Olive Way, Room 876, Seattle WA 98101, USA. E-mail: benjamin.wilfond{at}seattlechildrens.org
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Abstract |
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Objective Ethical evaluation of genetic testing in children is traditionally based on balancing clinical benefits and risks. However, this focus can be inconsistent with the general practice of respecting parental decision-making about their children's health care. We argue that respect for parental decision-making should play a larger role in shaping pediatric genetic testing practices, and play a similar role regarding decisions to use emerging genomic technologies. Methods Genomic testing involves the examination of thousands of DNA markers spanning genes throughout the genome and their interrelationships, yielding virtually limitless interpretations. We presume that parents and providers should proceed cautiously in applying genomic testing in children, as we explore how genomic testing will stress the fault lines of the traditional ethical analysis. Results Empirical data about the psychosocial risks and benefits of genetic testing of children do not reveal serious harms, yet virtually no such data exist yet about genomic testing. Unless empirical social and behavioral data indicate that genomic testing is highly likely to cause serious harms to the children, parental decisions to obtain comprehensive genomic testing in their children should be respected. Once comprehensive genomic testing of children becomes routine, resultant information may be more easily integrated by families than anticipated. Conclusions Research on the social and behavioral impact of comprehensive genomic testing on children and their families is needed to further inform parents, clinicians, and policy makers.
Key words: children; clinical utility; decision-making; ethics; genetic testing; genomics; parents; pediatrics; policy.
Received December 9, 2007; revision received June 24, 2008; accepted June 26, 2008