Document Type
Article
Publication Title
American Journal of Bioethics
Publication Date
3-2014
ISSN
1526-5161
Page Number
538
Keywords
genetic testing, pediatrics, exome sequencing, risks, benefits
Disciplines
Health Law and Policy | Law | Legal Ethics and Professional Responsibility | Science and Technology Law
Abstract
American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recom-mendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium’s PediatricsWorking Group compared these recommendations, focusing on operational and ethical issues specific to decision making forchildren. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locusof decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or come to different butcompatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways.AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventionsavailable during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzesrisks and benefits using the interests of the child and other family members and recommends that sequencing results be examinedfor additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicianswho should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appearto be in tension with each other.
Recommended Citation
Ellen Wright Clayton, Laurence B. McCullough, Leslie G. Biesecker, Steven Joffe, Lainie Friedman Ross, and Susan M. Wolf,
Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children, 14 American Journal of Bioethics. 538
(2014)
Available at: https://scholarship.law.vanderbilt.edu/faculty-publications/1611
Included in
Health Law and Policy Commons, Legal Ethics and Professional Responsibility Commons, Science and Technology Law Commons