Document Type

Article

Publication Date

1-1-2016

Identifier

DOI: 10.1542/peds.2015-3731I

Abstract

Clinical whole-genome sequencing (WGS) promises to deliver faster diagnoses and lead to better management of care in the NICU. However,several disability rights advocates have expressed concern that clinical use of genetic technologies may reinforce and perpetuate stigmatization of and discrimination against disabled persons in medical and social contexts. There is growing need, then, for clinicians and bioethicists to consider how the clinical use of WGS in the newborn period might exacerbate such harms to persons with disabilities. This article explores ways to extend these concerns to clinical WGS in neonatal care. By considering these perspectives during the early phases of expanded use of WGS in the NICU, this article encourages clinicians and bioethicists to continue to reflect on ways to attend to the concerns of disability rights advocates, foster trust and cooperation between the medical and disability communities, and forestall some of the social harms clinical WGS might cause to persons with disabilities and their families.

Journal Title

Pediatrics

Volume

137 Suppl 1

First Page

47

Last Page

55

MeSH Keywords

Decision Making; Disabled Children; Female; Genetic Counseling; Genetic Predisposition to Disease; Genetic Testing; High-Throughput Nucleotide Sequencing; Humans; Infant, Newborn; Intensive Care Units, Neonatal; Neonatal Screening; Pregnancy; Prejudice; Prenatal Diagnosis; Sequence Analysis, DNA; Social Stigma

Keywords

Babies; Children; WGS

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