Genomic Services Provision in the Context of Fetal Loss - Project Summary (Completed)

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This project focused on improving access to genomic testing following fetal loss. It included a baseline assessment of current practice across the East of England and the development of shared pathways and educational resources for bereavement and maternity staff.

Aims of the Fetal Loss project

Supported by East Genomics, the project aimed to:

assess current bereavement and genomic testing practices across regional Trusts
identify variation, risks, and opportunities for improvement
develop recommendations for shared pathways
explore how genomic insights - particularly postmortem findings and stored fetal DNA - could better inform future pregnancies

Engagement With Bereavement Midwives

Bereavement midwives were invited to contribute to the service review through a one-to-one structured discussion with a member of the project team.

These anonymised conversations:

explored how counselling around postmortem and genomic testing was being delivered
highlighted examples of excellent practice
identified barriers, gaps, and inequities
assessed the availability and usefulness of educational resources for clinicians

Their insight formed the foundation of the project’s findings and recommendations.

The project team

Dr Rachel Wooldridge (Consultant Obstetrician, East and North Hertfordshire NHS Trust)
Dr Jacqueline Eason (Consultant in Clinical Genetics, Nottingham University Hospitals NHS Trust)
Dr Pradeep Vasudevan (Consultant Clinical Geneticist, University Hospitals of Leicester NHS Trust)
Demi Blair (Registrar in Maternal and Fetal Medicine, Norfolk and Norwich University Hospitals NHS Foundation Trust)
Danielle Whittaker (Specialist Bereavement Midwife, East and North Hertfordshire NHS Trust)
Joanne Hargrave (Lead Midwife, East Genomics)
Katy Blakely (Regional Programme Manager, East Genomics)

Project partners

The project reached out to wide range of stakeholders for experience and expertise, including:

Royal Colleges
Support charities
NHS bereavement teams

This broad engagement tried to ensure the work reflected both clinical and lived experience perspectives.

Progress and Activity

Throughout 2025/26, the project undertook a comprehensive review of bereavement and genomic pathways following pregnancy loss across the East Genomics region.

A structured programme of engagement, data collection, and analysis was completed to establish a clear regional baseline and identify opportunities for improvement.

Key activicities included:

✔ Regional engagement and stakeholder consultation

The project was introduced at regional Directors and Heads of Midwifery meetings, the East GMSA Prenatal Forum, and the Regional Midwives in Genetics and Genomics Network. Two dedicated stakeholder sessions were held with representatives from fetal medicine, bereavement services, early pregnancy units, Clinical Genetics, and genomic laboratories. These sessions helped refine the survey tool and ensured the project reflected clinical and patient perspectives.

✔ Development and refinement of the survey tool

The survey was co-designed with bereavement and genomic specialists, piloted, and refined mid-project to ensure accuracy and consistency. It captured detailed information on service configuration, training, environments, genomic processes, and follow-up care.

✔ Structured survey completion with bereavement teams

A total of 14 out of 18 bereavement teams participated in one-to-one structured discussions. To explored how postmortem and genomic testing were offered, the practical realities of pathway delivery, and the challenges faced by staff.

✔ Thematic analysis of regional findings

A detailed analysis identified five core themes directly affecting genomic and postmortem pathways, including variation in care, inequitable access, training gaps, pathway complexity, and inconsistent follow-up. Two additional themes highlighted broader system pressures, such as fragile staffing and suboptimal environments.

✔ Review of education and training provision

The project assessed existing bereavement and genomic training resources, identifying significant gaps in staff confidence, genomic literacy, and access to practical guidance. This informed the development of new educational tools, including bitesize videos, a consent presentation, GeNotes, and a clinical poster.

✔ Development of practical resources

The project produced:

a suite of bitesize educational videos
a consent training presentation
GeNotes for quick-reference genomic guidance
A ‘genomic testing for pregnancy loss-quick guide’ poster
A checklist of considerations for Directors and Heads of Midwifery to implement into bereavement services

✔ Presentation of findings

The project’s findings and recommendations were presented at the Prenatal Genomics Community of Practice in January 2026, supporting wider regional learning and alignment with national priorities.

Further presentations include a poster at the BMFMS, AGNC, and Rainbow conference 2026.

Find out more

See our Genetic Testing after Pregnancy Loss toolkit page for further information and documents.