Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children

Authors

Ellen Wright Clayton, Vanderbilt University Law School
Laurence B. McCullough, Baylor College of Medicine
Leslie G. Biesecker, National Health Genome Research Institute
Steven Joffe, University of Pennsylvania
Lainie Friedman Ross, University of Chicago
Susan M. Wolf, University of Minnesota

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