Public deliberation: research access to Newborn Genomes Programme data
In early 2023, Hopkins Van Mil was commissioned by Genomics England to run a public deliberation with 103 members of the public to consider the scope of discovery research with newborns’ genomic data that will be held in the National Genomic Research Library (NGRL).
This public dialogue was completed as part of the NHS-embedded Generation Study which aims to explore the benefits, challenges, and practicalities of sequencing and analysing newborns' genomes.
One of the 3 aims of the Generation Study is to understand how babies’ genomic data could be used for discovery research – particularly research that focuses on developing new treatments and diagnostics for NHS patients.
The dialogue participants were drawn from a demographic broadly reflective of the population and came together in four sub-groups:
Northern and Southern England participants met online in four workshops between 7th and 23rd February 2023
Participants from Liverpool, London and surrounding areas met in day-long workshops held in-person on 4th and 25th February 2023
Two key points emerged from this dialogue:
Data used in discovery research is sensitive because it is genomic data; not because it is newborns’ genomic data. People’s trust in discovery research will depend on it being clear that the sensitive nature of this data is respected.
Researchers’ motivations were of more concern for participants than what the purpose of the research might be. Understanding why a researcher would want to carry out their study is important when considering whether to approve it.
As a result of the report, Genomics England will review how they communicate discovery research, and will produce a series of accessible guides on key concepts for discovery research in the NGRL.
The full report has now been published and is available to read in full here.
One of our workshops in Liverpool