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
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
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
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