Ethical and Psychosocial Aspects of Genomics in the Neonatal Period

doi:10.3390/books978-3-7258-7694-5

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Keywords

genomic sequencing; ethics; interpretation; newborn screening; parental advocacy history; residual dried blood spots; newborn screening expansion; recommended uniform screening panel (RUSP); secretary’s advisory committee of heritable disorders in newborns and children (ACHDNC); ethics; Chile; Latin America; newborn genome sequencing; newborn sequencing; critically ill newborns; ethics; genomic sequencing; newborn screening; policy; rapid whole exome sequencing; rapid whole genome sequencing; newborn screening; genomic testing; next generation genomic sequencing; ethics; diagnostic odyssey; newborn genomic sequencing; NICU; health disparities; equity; justice; cystic fibrosis; next-generation sequencing; newborn screening; newborn screening sequencing; newborn genomics; ethics; psychosocial; pediatric rare disease; genome sequencing; newborn hearing screening; newborn screening; newborn genome sequencing; incidental findings; secondary findings; carrier status; newborn screening; ethics; consent; DNA sequencing; genome; genomic newborn screening; Krabbe disease; Pompe disease; adrenoleukodystrophy; cystic fibrosis; incidental findings; CFTR-related metabolic syndrome; cystic fibrosis screen positive inconclusive diagnosis; newborn screening; next generation sequencing; policy; mortality; infant; neonate; sequencing; exome; genome; genetic; diagnosis; ethics; inborn errors of immunity (IEI); newborn screening; next-generation sequencing (NGS); whole-exome sequencing (WES); whole-genome sequencing (WGS); ethical, legal and social considerations (ELSI); genetics; newborn screening (NBS); stakeholder engagement; dissemination; implementation science; health equity; newborn screening; inborn error of metabolism; inherited metabolic diseases; dried blood spots; residual dried blood spots; extended genetic testing; biobank; survey; Hong Kong; newborn screening; bioethics; genomic sequencing; qualitative; public views; newborn screening; ethical; legal; social issues; ELSI; research; rare disease; NBSTRN; privacy; informed consent; public health

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Ethical and Psychosocial Aspects of Genomics in the Neonatal Period

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May 2026

182 pages

ISBN 978-3-7258-7693-8 (Hardback)
ISBN 978-3-7258-7694-5 (PDF)

https://doi.org/10.3390/books978-3-7258-7694-5

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This is a Reprint of the Special Issue Ethical and Psychosocial Aspects of Genomics in the Neonatal Period that was published in

Public Health & Healthcare

Medicine & Pharmacology

Summary

This first IJNS Special Issue on Ethical–Psychosocial Aspects of Genomics highlights the Neonatal Period with 17 peer-reviewed publications spanning Commentaries, Original Research articles, Reviews, Articles, and Opinions. We open with two invited historical reflections by distinguished colleagues, Dr. Harvey Levy and Dr. Rod Howell, both masterful storytellers and legends in the field.

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Ethical and Psychosocial Aspects of Genomics in the Neonatal Period

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