This hub provides practical guidance, training resources, and evidence-based recommendations to support safe, consistent genomic testing following pregnancy loss. It is aimed at Bereavement Midwives and Maternity staff and has been developed as part of the Genomic Services Provision in the Context of Fetal Loss project (2025/26).
Non-urgent advice: On this page
- Why genomic testing matters
- Summary of project findings
- Leadership actions to strengthen genomic pathways
- Education tools & training resources
- Supporting consent
- Support in the clinic
- Useful links and resources
Overview
Genomic testing after pregnancy loss can provide vital answers for families, supporting understanding of causation and informing future pregnancies. However, an East Genomics review identified significant variation in access, pathways, and staff confidence.
This learning hub brings together practical tools, training resources, and evidence-based consideration to support bereavement midwives and maternity teams in delivering safe, equitable genomic care.
Why Genomic Testing Matters
- Genomic testing may offer clearer diagnostic information
- Supports recurrence-risk counselling
- Helps guide future pregnancy planning
- Postmortem findings support genomic interpretation
- Inequity occurs when pathways vary
- National Genomic Test Directory expectations
About the Project
What We Heard: Summary of Project Findings
Key themes from the report identified:
- Variation and inequality of care
- Variation in criteria for postmortem and genomic investigations
- Knowledge gaps in genomic testing and pathways
- Postmortem and genomic pathways are complex and slow
- Follow-up is inconsistent and consultant-dependent
- Subsequent pregnancy support is valued but limited
Leadership Actions to Strengthen Genomic Pathways
Suggested actions (based on our report):
- Ensure staff know the Named Clinical Genetics contact for genomic advice
- Standardise local genomic testing pathways
- Maintain a register of staff trained to obtain consent
- Introduce a minimum-information checklist for genomic and postmortem requests
- Improve communication between maternity, pathology, and Clinical Genetics
- Strengthen dissemination of national genomic updates
- Ensure access to genomic training
- Support staff wellbeing
Coming soon: Our full report on the Genomic Services Provision in the Context of Fetal Loss project, plus an executive summary.
Educational Tools & Training Resources
Bitesize Video Series
Supporting Consent
Consent for genomic testing after pregnancy loss requires clarity, sensitivity, and confidence. This PowerPoint has been designed specifically for bereavement midwives and maternity staff to support high-quality, consistent consent discussions across the region.
- For further support, staff can access our Consent Toolkit on our Future NHS workspace here (NHS email required) (opens in a new tab)
Support in the clinic
Quick-reference tools to guide safe, confident genomic care during bereavement appointments.
To help bereavement midwives feel supported during real-time clinical conversations, we have developed two practical resources designed for use at the point of care: GeNotes and the Genomic Testing after Pregnancy Loss Poster (coming soon). These tools provide clear, accessible guidance when decisions need to be made quickly and sensitively.