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The Ethics of Sequencing Newborns: Reflections and Recommendations

Edited by Josephine Johnston, Erik Parens, and Barbara A. Koenig

As the cost of genome sequencing decreases, researchers and clinicians are debating whether all newborns should be sequenced at birth, facilitating a lifetime of personalized medical care. But while sequencing the genomes of some infants may be appropriate in specific contexts, genome-wide sequencing of all newborns should not be pursued at this time, and health professionals should recommend against parents using direct-to-consumer genetic sequencing to diagnose or screen their newborns, states the lead article in The Ethics of Sequencing Newborns: Recommendations and Reflections, a special report of the Hastings Center Report.

Twelve essays expand upon the recommendations in the lead article, exploring a range of issues. All essays in this special report are freely available online.

TABLE OF CONTENTS

ARTICLE

Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies
Josephine Johnston, John D. Lantos, Aaron Goldenberg, Flavia Chen, Erik Parens, Barbara A. Koenig, members of the NSIGHT Ethics and Policy Advisory Board

ESSAYS

Lessons for Sequencing from the Addition of Severe Combined Immunodeficiency to Newborn Screening Panels
Jennifer M. Puck

Eugenics Redux: “Reproductive Benefit” as a Rationale for Newborn Screening
Diane B. Paul

Are Parents Really Obligated to Learn as Much as Possible about Their Children’s Genomes?
Josephine Johnston, Eric Juengst

What Genomic Sequencing Can Offer Universal Newborn Screening Programs
Cynthia M. Powell

Whose Odyssey Is It? Family‐Centered Care in the Genomic Era
Jeffrey P. Brosco

A New Era, New Strategies: Education and Communication Strategies to Manage Greater Access to Genomic Information
Megan A. Lewis, Natasha Bonhomme, and Cinnamon S. Bloss

Families’ Experiences with Newborn Screening: A Critical Source of Evidence
Rachel Grob, Scott Roberts, Stefan Timmermans

My Diagnostic Odyssey—A Call to Expand Access to Genomic Testing for the Next Generation
Jeremy Michelson

Single‐Gene Sequencing in Newborn Screening: Success, Challenge, Hope
Robert J. Currier

The Legal Dimensions of Genomic Sequencing in Newborn Screening
Rachel L. Zacharias, Monica E. Smith, Jaime S. King

Commercial Interests, the Technological Imperative, and Advocates: Three Forces Driving Genomic Sequencing in Newborns
Stacey Pereira, Ellen Wright Clayton

Using Newborn Sequencing to Advance Understanding of the Natural History of Disease
Ingrid A. Holm