Professor Frances Flinter, emeritus professor of clinical genetics at Guy's and St Thomas' NHS Foundation Trust, and PET trustee, writes as a member of the Nuffield Council on Bioethics on the benefits and risks of whole genome sequencing (WGS) in newborns.
Professor Flinter discusses the Newborn Genomes Programme, which the government plans to launch later this year (see BioNews 1172). The NHS aims to use WGS to detect rare genetic conditions in a cohort of 100,000 newborns in a pilot study run by Genomics England and the NHS, with the hope of early diagnosis and intervention with effective therapies for babies with genetic conditions.
Parents will be offered the opportunity for their newborn babies to have their whole genome sequenced, alongside the usual neonatal heel prick test which currently tests for nine conditions.
However, Professor Flinter explains that 'It is important that parents who give consent for their babies to become enrolled into this research project also understand the risks… the potential harms are false or uncertain results, unnecessary anxiety for parents, and a lack of good follow-up care for babies with a positive screening result.'
Visit Nuffield Council on Bioethics to read her full article.
