“A tool for implementers of genomic sequencing for newborn screening to navigate ethical, legal, and social issues” is now open for public comment

Developed by the Regulatory & Ethics Work Stream, “A tool for implementers of genomic sequencing for newborn screening to navigate ethical, legal, and social issues” is now open for public comment.

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.

Review and leave feedback on the document or send your feedback to Gemma Brown.