The Generation Study and health visitors

21st March 2025

We are delighted to share this Voices blog by Sally Shillaker, Practice Development Lead – Genomics at the Institute of Health Visiting. Sally shares an update on a new project with Genomics England (GEL) to raise health visitors’ awareness of the Generation Study and how to get involved.

The Generation Study image – shared with kind permission of Genomics England

“Hundreds of babies have begun to be tested for over 200 rare genetic conditions as part of a world-leading study in NHS hospitals that aims to screen up to 100,000 newborns in England.” ¹

Background

The Institute of Health Visiting (iHV) and Genomics England (GEL) are working together to raise health visitors’ awareness of the Generation Study in a new project – Realising the potential health visiting teams have to support babies, children and families participating in the Generation Study.

The Generation Study is a research study led by Genomics England in collaboration with a number of NHS trusts in England. Genomics England is a company owned by the Department of Health and Social Care.

The study will use a technology called whole genome sequencing to screen a baby’s genome for rare genetic conditions that tend to appear in the first few years of life, which can be treated in the NHS. Early diagnosis is important as it supports better health outcomes and quality of life for babies and their families.

The Generation Study has 3 main aims:

to find rare genetic conditions early so that affected babies can receive treatment as soon as possible.
to learn more about genes and health to improve testing and treatment of genetic conditions in the future.²
to explore whether storing a baby’s genome over their lifetime, could support their healthcare.

Amanda Pritchard, the current NHS CEO , said:

“Diagnosing rare conditions in newborn babies at the earliest opportunity through genomic testing could be truly life-changing for families – it has the potential to give thousands of children the chance to access the right treatment at the right time, giving them the best possible start to life, and for families to better plan for their care.”¹

It is important to state that the Generation Study is a research study and does not replace current NHS care such as newborn screening. Whatever decision parents reach about whether to participate in the Generation Study or not, their baby still needs the newborn blood spot test.

Genomics England recognises the important role that health visitors have in supporting families who have decided to join the Generation Study, now and in the future.

At iHV, we know that genomics is a new subject for many of us which is embedded in our new NMC professional standards. Collaboration with Genomics England provides an ideal opportunity to develop our role in applying genomics to the babies, children, and families we support.

This new project (Realising the potential health visiting teams have to support babies, children and families participating in the Generation Study) has the following goals:

To develop and deliver awareness sessions for health visitors and health visiting teams about the Generation study.
To offer a monthly virtual forum to support health visitors and health visiting teams.
To identify optimum systems of support for health visitors and health visiting in practice.
To develop a draft pathway of care for health visitors and midwives working with families participating in the Generation Study.
To evaluate the immediate impact of raising awareness of the Generation Study on health visitors, health visiting teams, babies, children, and families.