| |
| |
| |
| |
Welcome to the first edition of our Midwifery Genetics & Genomics update.
During this transition period, this newsletter will replace our previous nursing and midwifery communications. | | | |
To help manage capacity, it will be a shorter update focusing on key information relevant to maternity services, including important clinical developments, educational opportunities, and upcoming events.
Thank you for your continued support during this period of change.
Jo Hargrave Midwife Lead, NHS East Genomics | |
| |
Understanding Black women's experiences of prenatal testing | |
A recent UK qualitative study explored the experiences of Black women accessing prenatal screening and diagnostic testing in England.
While many valued the opportunity to make informed choices, some described feeling unprepared for unexpected results and reported inconsistent counselling, communication and support. Experiences of bias and discrimination also affected trust in maternity services.
What this means for midwives - Support informed choice-avoid presenting screening as "routine".
- Explain possible results and next steps before testing.
- Check understanding and encourage questions.
- Be mindful of how communication and unconscious bias can influence women's experiences.
Key message: Equitable, personalised communication is just as important as the test itself in supporting women to make informed decisions.
You can read the full article here. | |
| |
| Genomics in maternity care | |
As genomic research continues to develop, selected NHS Trusts in the East of England are continuing to take part in the Generation Study, exploring the use of whole genome sequencing in newborns.
To learn more about how genomics is shaping maternity care, listen to Genomics England's Behind the Genes podcast where one of the Research midwives joined the conversation.
Recent research highlights why the role of midwives is so important. A qualitative study of parents receiving a positive newborn screening result for Severe Combined Immunodeficiency (SCID) or non-SCID T-cell lymphopenia found that families valued clear information, compassionate communication and ongoing support while waiting for further investigations. Alongside this, emerging evidence from genomic newborn screening programmes shows the potential to identify more babies with treatable genetic conditions at an earlier stage, while also emphasising the need for careful implementation, informed consent and support for families.
What this means for midwives - Support informed decision-making about screening and research opportunities.
- Help families understand what genomic screening can and cannot tell us.
- Prepare parents for the possibility that some results require further investigation.
- Recognise the emotional impact of uncertainty and know where to signpost families for specialist support.
- Continue developing genomics knowledge as genomic medicine becomes increasingly integrated into maternity care.
Key message As genomics becomes more integrated into maternity care, midwives will play a central role in supporting informed choice, explaining complex information and providing compassionate support throughout the screening journey.
Find out more | |
| |
Updates to resources for R445 Non-Invasive Pre-natal Testing (NIPT) | |
R445 is the clinical indicator code in the National Genomic Test Directory offering non-invasive pre-natal testing (NIPT) where there is any previous pregnancy with reported full trisomy of chromosomes 13,18 or 21. Please refer to the latest version of the test directory for detailed information on specific eligibility criteria.
Resources that were originally developed to support the roll-out of the R445 pathway within maternity services have recently been reviewed and updated. All information can be found here.
| |
| |
New Genomics Toolkits on our website | |
We have added some new Genomics Toolkits to our website which provide information, guidance and resources to support best practice in genomic testing for particular conditions or pathways.
Toolkits currently available include: - Glucokinase Hyperglycaemia in pregnancy
- Genetic testing after pregnancy loss
- R21 (Rapid Prenatal Exome Sequencing)
We will be adding new resources to our Genomics Toolkit page over the course of the year. If you would like to discuss the development of a toolkit, or have feedback on any of our existing resources, please contact our Communications Lead Ian Kingsbury,
| |
| |
Empowering nurses and midwives: giving you the tools to improve care for people with Down syndrome | |
We’re delighted to be joined by Lu Cooper, whose son Billy has Down syndrome. Lu is the healthcare training manager for Down Syndrome UK.
On Monday 20 July (1-2pm) Lu will be sharing her experience of NHS care including her prenatal and postnatal experience, and discussing the power of language for both expectant and new parents of babies with Down syndrome.
She’ll be talking about: - what she wished midwives and nurses knew about Down syndrome and how to support families.
- antenatal care guidelines that have been developed by Down Syndrome UK
Midwife Marianne Quinn will be walking us through the biology of Down syndrome and exploring how genetic testing can support safer pregnancies and decision making.
Everyone is welcome, particularly nurses and midwives. This is a very informal webinar and Lu and Marianne would welcome your questions and discussions. It’s part of our national Empowering Nurses & Midwives educational series which brings you an educational webinar every month.
| |
| |
| |
National Genomics Research Forum for Nurses and Midwives | |
21 July 2026, 16:00 - 17:00
Special guests will be Professor Trixie Maxwell, Senior Midwife from the Chief Midwife's Office at NHS England, who will be sharing insights on how to begin your journey towards a clinical academic career, and Reeshu Varma, a newly qualified nurse, who will discuss her experience of starting a clinical academic career in genomics.
The Forum invites nurses and midwives with an interest in genomics research to join a growing, supportive national network. You can register here. | |
| |
Genomics for Educators 3-day intensive course | |
18 & 19 August in person (Birmingham), 1 September online
For educators of Undergraduate nurses, pharmacists, midwives and AHPs. Topics include fundamentals of genomics, the diagnostic odyssey (Rare disease), taking and analysing a family tree, types of genetic test, ordering a test, ethic and legal implications.
The course costs £150 plus booking fees per person for three days. Payments must be made by bank transfer; payment details can be found during registration. Find out more here.
| |
| |
Antenatal Results and Choices (ARC) Conference | |
26 September 2026, 09:00 - 14:30
Antenatal screening and diagnosis – where are we now and where are we going? Register here.
| |
Education, Training and Resources | |
| |
| |
| |
| |
| |
If you would like to unsubscribe to these newsletters please email us | |
.png)
