title: Whole-Genome Sequencing and Disability in the NICU: Exploring Practical and Ethical Challenges.
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.
authors.affiliation: Center for Bioethics, Children's Mercy Hospital, Kansas City, Missouri, and Department of Multidisciplinary Studies and The Center for Genomic Advocacy, Indiana State University, Terre Haute, Indiana michael.deem@indstate.edu.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Deem
mesh_terms: D003657:Decision Making; D019988:Children with Disabilities; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000941:ethics*; D059014:High-Throughput Nucleotide Sequencing; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D015997:Neonatal Screening / Q000941:ethics*; D011247:Pregnancy; D011287:Prejudice; D011296:Prenatal Diagnosis; D017422:Sequence Analysis, DNA; D057545:Social Stigma