Public Deliberation Research

Tender description

Genomics England’s Newborns Genome Programme is co-designing and running an NHS-embedded research study to explore the benefits, challenges, and practicalities of sequencing and analysing the genomes of newborns through using whole genome sequencing (WGS). The evidence gathered from the study will be evaluated rigorously to inform decisions about whether to roll-out this technology and develop the world’s first national newborn screening programme that uses whole genome sequencing. One of the Programme’s objectives is to understand how newborns’ genomic and health data could be used for discovery research – for example, to enable the development of new diagnostics and treatments. With parents’ consent, babies’ genomes could be de-identified and added, alongside their health data, to Genomics England’s National Genomic Research Library. This would enable carefully vetted academic, clinical, and life science industry researchers to develop novel diagnostics and treatments as well as understand how current therapies can be improved or repurposed, offering better outcomes to NHS patients. We are aware of particular sensitivities in society generally around the long-term storage and use of genomic and related health data in the context of research. To address these concerns, to date we have carried out small-scale in-house research with mothers or expectant mothers, where we have explored their feelings around how researchers could access and use newborns’ genomes for research. However, this procurement aims to broaden these discussions, and unpack people’s views on various options and approaches for the Programme’s discovery research strategy. This procurement will support these aims, enabling in-depth exploration of attitudes and views on different types of data that could be drawn on for the Programme’s research strategy, the acceptable and appropriate scope of research on these data, and specific mechanisms for creating a trustworthy system for doing so.