전장유전체 분석(Whole Genome Sequencing, WGS) 기반신생아 선별검사 동의 체계 개발을 위한 체계적 문헌고찰
A Systematic Review for the Development of a Consent System for Newborn Screening Based on Whole-Genome Sequencing (WGS)
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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.
Abstract
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.