DNA: Babies

The 10-Year Health Plan set out an ambition to “implement universal genomic testing” within the next decade. Delivering against this ambition will be subject to evidence gathered through the Generation Study, delivered by Genomics England and the National Health Service. This research programme is evaluating the effectiveness of using whole genome sequencing to test 100,000 newborns for genetic mutations associated with more than 200 rare genetic conditions. The study is asking parents for consent to securely store their baby’s genomic and health data, with strict safeguards to protect identities. With consent, data is stored securely in the National Genomic Research Library, run by Genomics England, to support research on the causes of genetic conditions. Access is tightly controlled, overseen by an independent committee, and only permitted within a secure environment.