@article{ART003323207},
author={HyeonJeong Park and lee junghyun and 유원후 and Hannah Kim},
title={Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening},
journal={Korean Journal of Medical Ethics },
issn={2005-8284},
year={2026},
volume={29},
number={1},
pages={15-29}
TY - JOUR
AU - HyeonJeong Park
AU - lee junghyun
AU - 유원후
AU - Hannah Kim
TI - Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening
JO - Korean Journal of Medical Ethics
PY - 2026
VL - 29
IS - 1
PB - The Korean Society For Medical Ethics
SP - 15
EP - 29
SN - 2005-8284
AB - This study aims to develop a standardized informed consent system for whole-genome sequencing (WGS)-based newborn screening (NBS) in Korea through a policy design approach grounded in the domestic legal and policy context. We conducted an integrated literature review of international norms, domestic legal frameworks, guidelines, and major overseas WGS-based NBS programs using a common analytical framework. To develop a consent model feasible in the Korean context, we also analyzed stakeholder evidence from parent interviews and a clinician survey focused on consent-related issues. The findings indicate that the current Korean legal and institutional framework does not adequately address long-term storage, reanalysis, recontact, and the transfer of decision-making authority as the child matures. Based on these findings, we propose a Korean informed consent model consisting of a staged consent pathway spanning antenatal, postnatal, and adulthood-related decision points; tiered consent options for the return of results; and safeguards against disadvantage or discrimination related to participation, non-participation, or withdrawal. The study further suggests that implementation will require broader legal and procedural clarification across the relevant regulatory framework, along with the continued development of education and counseling strategies.
KW - whole genome sequencing;newborn screening;informed consent form;comparative analysis;stakeholder analysis
DO -
UR -
ER -
HyeonJeong Park, lee junghyun, 유원후 and Hannah Kim. (2026). Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening. Korean Journal of Medical Ethics , 29(1), 15-29.
HyeonJeong Park, lee junghyun, 유원후 and Hannah Kim. 2026, "Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening", Korean Journal of Medical Ethics , vol.29, no.1 pp.15-29.
HyeonJeong Park, lee junghyun, 유원후, Hannah Kim "Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening" Korean Journal of Medical Ethics 29.1 pp.15-29 (2026) : 15.
HyeonJeong Park, lee junghyun, 유원후, Hannah Kim. Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening. 2026; 29(1), 15-29.
HyeonJeong Park, lee junghyun, 유원후 and Hannah Kim. "Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening" Korean Journal of Medical Ethics 29, no.1 (2026) : 15-29.
HyeonJeong Park; lee junghyun; 유원후; Hannah Kim. Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening. Korean Journal of Medical Ethics , 29(1), 15-29.
HyeonJeong Park; lee junghyun; 유원후; Hannah Kim. Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening. Korean Journal of Medical Ethics . 2026; 29(1) 15-29.
HyeonJeong Park, lee junghyun, 유원후, Hannah Kim. Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening. 2026; 29(1), 15-29.
HyeonJeong Park, lee junghyun, 유원후 and Hannah Kim. "Parental Consent Approaches for Newborn Whole-Genome Sequencing–Based Screening" Korean Journal of Medical Ethics 29, no.1 (2026) : 15-29.
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