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Newborn Whole Genome Sequencing
Develop best practices to address regulatory and ethical concerns with newborn whole genome sequencing
Countries around the world are piloting the emerging practice of whole genome sequencing (WGS) for newborns. While the practice offers the promise to diagnose newborns with detectable diseases and develop personalised treatment plans, the use of WGS for newborns still raises significant legal and ethical concerns. Formed by the Regulatory & Ethics Work Stream (REWS), the Newborn Whole Genome Sequencing group seeks to respond to the increasing national interest in newborn WGS by identifying questions that researchers and research organisations should address when considering whether or not to pursue this practice in research and clinical settings. Specifically, the group will analyse existing international regulatory and ethical standpoints shaping WGS for newborns to develop best practices in the area.
Explore a synthesis of the literature regarding ethical, legal, and social implications (ELSI) of newborn whole genome sequencing.
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Benefits
- Aims to develop guidance on the ethical and legal considerations surrounding newborn WGS
- Responds to the increasing interest in newborn whole genome sequencing by providing a policy tool designed to help implementers of these projects to navigate the ELSI dimensions they will face. It does this primarily via identifying the decision points they will face that have ELSI dimensions, and synthesising the existing regulatory and ethical standpoints related to each decision point.
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Researchers, clinicians, clinical laboratories, and research institutes
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Dive deeper into this product! There are many legal and ethical questions in the area of newborn WGS. These include: what conditions should be tested; what information should be relayed and when; how long should the data be held; who should have access to the data; what age does the child gain control of the data; and how will WGS interact with existing biochemical screenings? The group aims to pool perspectives to guide the adoption of newborn WGS across borders. Potential topics to cover include identifying a set of minimal research evidence and normative considerations required by researchers and research institutions before engaging in newborn WGS, conducting a literature review to synthesise current information on newborn WGS, and determining any outstanding ethical or policy questions to determine whether or not newborn WGS is justified.
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11 Dec 2025
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