WGS at Birth: What Research Can, and Should, Be Done with a Baby's Genome?

A free-to-attend online event about whole genome sequencing at birth, asking how researchers should be able to use genomic data from newborn babies.

This event is produced by the Progress Educational Trust (PET), in partnership with Genomics England and its Newborn Genomes Programme.

The event will be chaired by Sarah Norcross, with speakers including Professor Neena Modi, Dr Imran Kausar, Michelle Mackie and Professor Michael Parker.

Genomics England's Newborn Genomes Programme will explore – in an ethics-approved research pilot, due to be embedded in the NHS – whether and how whole genome sequencing might, in future, be offered routinely for newborn babies in the UK.

If whole genome sequencing were offered routinely in this way, then deidentified genomic data from newborns could, with parental consent, be made available to appropriate researchers within the Genomics England Research Environment. This in turn could contribute to the development of novel diagnostics and treatments (plus the improvement and repurposing of established diagnostics and treatments).

At this event, experts and advocates will address questions including:

• How significant might be the benefits, to research and to medicine, if researchers could make use of genomic data from newborns? How do we know this?
• How, and by whom, will it be decided that particular individuals or organisations can access genomic data from newborns for research purposes? What will such researchers be permitted – and not permitted – to do with this data?
• What oversight will be in place? How does access to data in the Genomics England Research Environment work at present? Would these arrangements need to be modified, in a new context of routinely sequencing the whole genomes of newborns?
• If parents accept the offer of whole genome sequencing for their newborn baby, will they also be able to place conditions on the use of their baby's genomic data? Will they be able to opt out altogether from research uses of this data?
• How can the public make its voice heard on these matters?

If discussing this event on social media, please use the hashtag #GenomicsConversation

If you are a journalist and are interested in reporting on this event, please email [email protected] with any queries.

Attendees will not be audible or visible during this online event, but will still be able to put questions and comments to the speakers and chair, via a Q&A tool within Zoom Video Webinars.