The Legal Dimensions of Genomic Sequencing in Newborn Screening

The Ethics of Sequencing Newborns: Recommendations and Reflections, special report, Hastings Center Report 48, no. 4 (2018): S39-S41.

3 Pages Posted: 29 Sep 2020 Last revised: 21 Dec 2021

See all articles by Rachel Zacharias

Rachel Zacharias

University of Pennsylvania Law School

Monica Smith

affiliation not provided to SSRN

Jaime S. King

Faculty of Law, The University of Auckland

Date Written: July 1, 2018

Abstract

The possible integration of genomic sequencing (including whole‐genome and whole‐exome sequencing) into the three contexts addressed in this special report—state‐mandated screening programs, clinical care, and direct‐to‐consumer services—raises related but distinct legal issues. This essay will outline the legal issues surrounding the integration of genomic sequencing into state newborn screening programs, parental rights to refuse and access sequencing for their newborns in clinical and direct‐to‐consumer care, and privacy‐related legal issues attending the use of sequencing in newborns.

Suggested Citation

Zacharias, Rachel and Smith, Monica and King, Jaime S., The Legal Dimensions of Genomic Sequencing in Newborn Screening (July 1, 2018). The Ethics of Sequencing Newborns: Recommendations and Reflections, special report, Hastings Center Report 48, no. 4 (2018): S39-S41., Available at SSRN: https://ssrn.com/abstract=3672692

Rachel Zacharias (Contact Author)

University of Pennsylvania Law School ( email )

3501 Sansom St
Philadelphia, PA 19104
United States

Monica Smith

affiliation not provided to SSRN

Jaime S. King

Faculty of Law, The University of Auckland ( email )

Private Bag 92019
Auckland Mail Centre
Auckland, 1142
New Zealand

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