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Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found

Medicine and Health

Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found

B. M. Knoppers, A. E. Bonilha, et al.

This paper, authored by Bartha Maria Knoppers, Ana Eliza Bonilha, Anne-Marie Laberge, Arzoo Ahmed, and Ainsley J. Newson, delves into the intricate ethical and legal challenges of genomic sequencing within newborn bloodspot screening. It highlights the necessity for appropriate consent while balancing universal screening against the backdrop of evolving genomic technologies.

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Playback language: English
Abstract
This paper explores the ethical and legal complexities of integrating genomic sequencing into newborn bloodspot screening. It examines the impact on children's health rights and existing consent practices, discussing public health ethics and the 'right of the asymptomatic at-risk child to be found.' The authors advocate for 'appropriate consent,' particularly for virtual panels, balancing universal screening with the complexities of genomic technology.
Publisher
European Journal of Human Genetics
Published On
May 01, 2024
Authors
Bartha Maria Knoppers, Ana Eliza Bonilha, Anne-Marie Laberge, Arzoo Ahmed, Ainsley J. Newson
Tags
genomic sequencing
newborn screening
ethical complexities
health rights
consent practices
public health ethics
asymptomatic at-risk children

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