Document Type

Article

Publication Date

4-1-2017

Identifier

PMCID: PMC5369679 DOI: 10.1542/peds.2016-3471

Abstract

Genome sequencing raises new ethical challenges. Decoding the genome produces new forms of diagnostic and prognostic information; however, the information is often difficult to interpret. The connection between most genetic variants and their phenotypic manifestations is not understood. This scenario is particularly true for disorders that are not associated with an autosomal genetic variant. The analytic uncertainty is compounded by moral uncertainty about how, exactly, the results of genomic testing should influence clinical decisions. In this Ethics Rounds, we present a case in which genomic findings seemed to play a role in deciding whether a patient was to be listed as a transplant candidate. We then asked experts in bioethics and cardiology to discuss the implications of such decisions.

Journal Title

Pediatrics

Volume

139

Issue

4

MeSH Keywords

Bioethics; Child; Contraindications; Genetic Testing; Genomics; Heart Transplantation; Humans; Male; Uncertainty

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