Two Regulatory & Ethics Work Stream (REWS) products are now open for public comment. During this period, we invite feedback from all members of the genomics and health community. Comments are due by 10 October 2025.

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A tool for implementers of genomic sequencing for newborn screening to navigate ethical, legal, and social issues

Any team seeking to implement a genomic newborn screening (gNBS) programme will engage with ethical, legal, and social implication (ELSI) topics. Thoughtful and intentional navigation of ELSI is crucial to deliver benefits to screened newborns and their families, mitigate potential harms, and maintain public trust.

This new REWS tool aims to help initiatives, research projects, and pilot studies identify, assess, and address ELSI topics when implementing gNBS programmes. Key decision points and the rationale behind them are shared in a format that facilitates comparison and learning across programmes. Each decision point also includes a summary of the existing literature, the ELSI issue at stake, possible strategies to consider, and more.

> Learn more and share your feedback.

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Position Statement on Genetic Discrimination

As genomic research and testing continue to advance, concerns about genetic discrimination (GD) have become increasingly prominent. Despite growing concerns around GD, its frequency and spread have been very challenging to determine given differences in scientific methodologies used for data collection and varying levels of analytic rigor across studies. This position statement affirms GA4GH’s position that GD is a violation of human rights and equity, and proposes eight recommendations that stakeholders should take to address GD.

Learn more and share your feedback.