Genomics is transforming the way we understand health and manage disease across the UK – and will become an increasingly important part of almost every aspect of healthcare, including health visiting. At this iHV Insights webinar we heard about ground‑breaking research focused on newborn genome screening in England and its implications for health visiting practice. And we were delighted to be joined by Vicky and Joey Underhay, parents to Freddie, who was found to have a condition screened for in the Generation Study called hereditary retinoblastoma.

The Generation Study is a national large-scale research study, which is sequencing the genomes of 100,000 newborns to screen for 200+ rare genetic conditions at various hospitals in England.

Speakers included:

  • Lindsay Ratan – a Case Manager working on the Generation Study, with a focus on returning condition suspected results to the Regional Results Co-Ordinators. Lindsay’s background is in Midwifery, most recently Antenatal and Newborn Screening
  • Amy Clarkson – a registered Genetic Counsellor, and prior to her current role as Regional Results Coordinator for the Generation Study in the North East and Yorkshire region, has worked in a range of areas within genetics
  • Vicky and Joey Underhay – parents with lived experience, who will share their personal journey
  • Dawn Wickers – Interim Team Leader, Nightingale Team, Rotherham Children’s Public Health Nursing Service – Family Health Division
  • Sally Shillaker, Practice Development Lead – Genomics, Institute of Health Visiting

📄 Presentation Slideset: The Generation Study: Genomics in action

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