KJCKorea
Journal Central

@article{ART003251335},
author={HyeonJeong Park and HYUNJAECHA and 유원후 and Hannah Kim and JUNHEWK KIM and SO YOON KIM},
title={A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)},
journal={Korean Journal of Medical Ethics },
issn={2005-8284},
year={2025},
volume={28},
number={3},
pages={207-228}

TY - JOUR
AU - HyeonJeong Park
AU - HYUNJAECHA
AU - 유원후
AU - Hannah Kim
AU - JUNHEWK KIM
AU - SO YOON KIM
TI - A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)
JO - Korean Journal of Medical Ethics
PY - 2025
VL - 28
IS - 3
PB - The Korean Society For Medical Ethics
SP - 207
EP - 228
SN - 2005-8284
AB - Informed consent for whole-genome sequencing (WGS)-based newborn screening presents distinctive ethical and legal challenges, particularly in balancing parental consent given on behalf of the child with the progressive realization of children’s rights. This study examines the issues discussed in the literature and proposes consent frameworks that are responsive to evolving clinical and societal contexts. A systematic literature review was conducted in accordance with PRISMA 2020 guidelines, analyzing 19 empirical, normative, and legal studies. The synthesis identified persistent tensions between safeguarding parental autonomy and ensuring the child’s future self-determination, alongside challenges in determining the scope, timing, and format of genomic information disclosure. International models increasingly adopt dynamic consent processes, such as staged consent or re-consent upon reaching legal capacity. These approaches illustrate the feasibility of aligning clinical utility, public health objectives, and rights-based ethics within large-scale genomic programs. Based on its findings, this study recommends the implementation of staged consent mechanisms, transparent disclosure protocols, and procedural safeguards tailored to domestic legal and political frameworks. Such evolving consent practices are expected to support the development of ethically robust and socially sustainable governance for WGS-based newborn screening.
KW - whole genome sequencing;newborn screening;informed consent;parental consent;best interest of child
DO -
UR -
ER -

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM and SO YOON KIM. (2025). A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS). Korean Journal of Medical Ethics , 28(3), 207-228.

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM and SO YOON KIM. 2025, "A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)", Korean Journal of Medical Ethics , vol.28, no.3 pp.207-228.

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM, SO YOON KIM "A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)" Korean Journal of Medical Ethics 28.3 pp.207-228 (2025) : 207.

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM, SO YOON KIM. A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS). 2025; 28(3), 207-228.

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM and SO YOON KIM. "A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)" Korean Journal of Medical Ethics 28, no.3 (2025) : 207-228.

HyeonJeong Park; HYUNJAECHA; 유원후; Hannah Kim; JUNHEWK KIM; SO YOON KIM. A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS). Korean Journal of Medical Ethics , 28(3), 207-228.

HyeonJeong Park; HYUNJAECHA; 유원후; Hannah Kim; JUNHEWK KIM; SO YOON KIM. A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS). Korean Journal of Medical Ethics . 2025; 28(3) 207-228.

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM, SO YOON KIM. A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS). 2025; 28(3), 207-228.

HyeonJeong Park, HYUNJAECHA, 유원후, Hannah Kim, JUNHEWK KIM and SO YOON KIM. "A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)" Korean Journal of Medical Ethics 28, no.3 (2025) : 207-228.