Genomics supporting early decisions and testing in newborn care.

By Maternity & Midwifery Forum

Online event

Overview

How genomics shapes early decisions and testing pathways in newborn care.

Genomics & the Newborn: Navigating Uncertainty, Early Conversations, and Testing Pathways in Newborn Care

This event brings together clinical experts, midwives, nurses, genetic counsellors, support organisations, and parent voices to explore the evolving role of genomics in newborn care. The agenda highlights the importance of sensitive and empathetic communication when unexpected health concerns arise, alongside practical pathways for testing and early recognition of rare conditions.

Through sessions on communicating uncertainty, identifying early signs, and understanding rapid sequencing in neonatal care, participants will gain insight into both the clinical and emotional dimensions of genomic practice. The programme also emphasises the lived experience of families, ensuring that compassion and clarity remain central to care.

Tuesday 20th January, 10:00-12:30

Agenda

· 10:00-10:10-Introduction to the session & Genomics

· 10:10-10:25

Mind Your Language: Communicating Uncertainty with Families

Providing families with sensitive and empathetic communication, managing expectations, and enhancing genomic literacy in the face of unexpected news.

Jo Hargrave, Lead Midwife, East GMSA & Tina Prendeville, Lead Midwife, North Thames GMSA

· 10:25-10:45

The First Signs: Recognising Rare Conditions in the Newborn

Key features and red flags in postnatal assessment

Liam Willgress, ANNP, Norfolk and Norwich University Hospital

10:45-10:55 Q&A Panel

· 10:55-11:15

Genomics in the NICU: Pathways for the Unwell Baby

R14 testing and rapid sequencing in neonatal care

Phil Costello, Lead Nurse, C&S GMSA

· 11:15-11:35

Clinical Care and Compassion: A Genetic Counsellors Perspective

Supporting families through uncertainty and genomic referrals

Pooja Dasani, Principal Genetic Counsellor, GOSH

11:35-11:45 Q&A Panel

· 11:45-12:15

Lived Experience: A Parent’s Perspective on Rare Diagnosis

Reflections on receiving a diagnosis and navigating care

Anita Davis, Information Officer and Simon May, Unique Parent Voice Member

· 12:15-12:25 Q&A Panel

· 12:25-12:30 Resources and Close

Hosted by: TBC

Contribution from:

Tina Prendeville, Lead Midwife, North Thames GMSA, Senior Research Midwife,

Imperial College London

Hargrave, Lead Midwife,East GMSA
Pooja Dasani, Genetic Counselling Lead, North Thames GMSA, Principal Genetic Counsellor, Great Ormond Street Hospital.
Anita Davis, Information Officer for Family Support, UNIQUE
Philandra Costello, Clinical Nurse Specialist

Biographies

Tina Prendeville

Tina is the Lead Midwife for the North Thames Genomic Medicine Service Alliance (GMSA) based at Great Ormond Street Hospital, and hosted by Chelsea & Westminster NHS Foundation Trust. In this role, she undertakes regional leadership to support the implementation of national and local transformation projects ensuring the mainstreaming of genomics in midwifery activity, working alongside the other six NHS GMS Alliances. In this role, she brings together providers, multi-disciplinary teams and diverse communities to work in partnership across geographies aligned to the NHS Genomic Laboratory Hub (GLH), raising awareness of research and ensuring equitable access to genomic testing pathways. This work has included developing a series of collaborative workshops to increase research participation in diverse communities, supporting health literacy, community advocacy and genomic awareness. Tina also works as a Senior Clinical Research Midwife at Imperial College London, within the Women’s Health Research Centre and Imperial College NHS Trust. Working together with genetic counselling and fetal medicine colleagues, this research in prenatal diagnostic studies has included non-invasive prenatal testing and whole exome sequencing in pregnancy. Currently she is also a co-applicant and recent author for several publications for a NIHR-funded national study evaluating complex interventions in the maternity setting, developing from an interest in ‘burnout’ of midwives and exploring new ways of working in the labour ward setting. Tina also has a special interest in how genomics and other omics technologies may improve the detection, diagnosis and personalised treatment of complications in pregnancy. She has also worked with Tommy’s Baby Charity team providing expert midwife-led advice, pioneering research and evidence-based information for parents.

Jo Hargrave

Jo is the Lead Midwife for the East GMSA and has completed an MSc in Genomic Medicine. She has over 18 years of experience, working within screening and fetal medicine services. She has a specialist interest in non-invasive prenatal screening (NIPT) and has acted as an NIPT advisor based within the SAFE test Laboratory, St George’s Hospital.

Her current role includes providing advice and support on national and regional projects, including for the Newborn Genomes Project. She has a passion for education and has co-developed online education packages and collaborated in journal writing. She is a regular organiser of genomic events to raise awareness to and midwives. Her most recent projects include spotlighting glucokinase hyperglycaemia (GCK) in pregnancy, and the development of an East Region Midwives in Genetics & Genomics network.

Pooja Dasani

Pooja Dasani is the Genetic Counselling Lead for the North Thames Genomic Medicine Service and a Principal Genetic Counsellor at Great Ormond Street Hospital. With extensive experience across multiple NHS trusts in England, she brings deep clinical expertise and strategic leadership to the field of genomic healthcare.

Pooja specialises in prenatal genomics, with a strong focus on delivering equitable, culturally sensitive care. She is a board member of the Genetic Counselling Registration Advisory Board (GCRAB), Co-Vice Chair of the British Society for Genetic Medicine (BSGM) Equality, Diversity and Inclusion sub-committee, and a member of the BSGM Prenatal Genomics Steering Group.

A passionate educator, Pooja leads the “Counselling Skills in Genomics” module for the MSc in Genomic Medicine at Queen Mary University of London. She has played a key role in developing and delivering genomics education for healthcare professionals at local, national, and international levels.

Pooja is a committed mentor and advocate for the evolving role of genetic counsellors within multidisciplinary teams. Her work champions inclusive leadership, service innovation, and workforce development in the rapidly advancing landscape of genomic medicine.

Anita Davis

Anita Davis, Information Officer for Family Support at UNIQUE, who brings her expertise and compassion to guiding families who are diagnosed with a rare chromosome or gene disorder and a parent member of UNIQUE-Simon-will also share his journey, offering a valuable insight into his family’s experience when his son was diagnosed with a rare chromosome disorder.

Liam Willgress

Advanced Neonatal Nurse Practitioner at the Norfolk and Norwich University Hospital Neonatal Intensive Care Unit

Special areas of interests in Neonatal Research and Clinical Education.

Philandra Costello

Since becoming a registered nurse in 1993, Philandra’s career has spanned various countries and diverse adult specialties. She started working with the CAS GMSA in May 2022 and has been working in genomics since 2011, first as a research sister for cancer and rare disease genetics studies before taking on the role of Clinical Nurse Specialist (CNS) for the 100,000 Genomes Project. Dedicated to enhancing patient experience and outcomes with genomics, she is passionate about bridging the gap between genomics and nursing through genomic awareness and education, striving to empower healthcare professionals with the knowledge and skills required for personalised and effective care in the genomics era. Outside of her professional pursuits, she finds solace in reading and rejuvenates through swimming.

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