The National Genetics and Genomics Office (NGGO) was established in 2023 to drive the implementation of the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland and improve Ireland’s genetic and genomic medicine services.
The NGGO is responsible for coordinating a national approach to genetics and genomics, supporting the development of a skilled genetic and genomic workforce, enhancing clinical services for patients and families, and strengthening laboratory and data infrastructure to drive advances in genetic and genomic medicine services.
What is genetic and genomic medicine?
Our genes are like tiny instructions inside our body that tell our cells how to work and grow. Genetic medicine looks at individual genes to understand how they can increase the risk of certain diseases or conditions, for example rare disease or cancers. Genomic medicine looks at a bigger picture. It involves studying the entire set of genes, called the genome, within a person’s body. Instead of focusing on just one gene, genomic medicine looks at how all of the genes work together to influence our health. The potential for genetic and genomic medicine is far reaching. It can help individuals and their families understand the condition, make a more precise and earlier diagnosis and help predict how a condition may progress over time. It can ensure the correct treatment is given at the earliest opportunity. And it allows individuals or couples to make informed choices about family planning.
This modern approach to medicine has the ability to improve the lives of people at risk of and suffering from some of the world’s most prevalent conditions, such as cancer and cardiovascular disease, as well as the rarest of diseases that might otherwise be difficult to diagnose.
To date, Ireland has made some progress in developing its genetic and genomic services, with examples of excellence evident throughout the country. However, to fully realise the benefits of genetics and genomics, there is an urgent need to mainstream them so that they can become an integral part of our routine care delivery.
A coordinated national genetics and genomics service is required to optimise patient outcomes and patient/citizen experience while advancing research, innovation, and discovery in this fast-moving field.
About the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland
The National Strategy for Accelerating Genetic and Genomic Medicine in Ireland is our first single national strategy for genetics and genomics services, encompassing care provided across acute, primary and community settings and spanning all ages. Through implementation of the National Strategy, the HSE is working to improve genetics and genomics services offered in Ireland, and striving to deliver a world-class patient and family-centred service that aligns with the values of Sláintecare through its focus on equity of access and improved patient outcomes.
The strategy will enhance the genetic and genomic workforce through the provision of additional frontline resources trained in genetic specialties: clinical geneticists, genetic counsellors, and genetic resource associates. A national education programme will build on current expertise and improve genetic/genomic literacy across health professionals and the public. The strategy also creates a new National Genetics and Genomics Office with responsibility for the oversight and coordination of genetic services. This new office will work with the Department of Health to ensure policies are in place to make the services ethical and inclusive.
NGGO Leadership Team
The purpose of the NGGO Leadership Team is to provide leadership in the implementation of the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland. The team includes expertise in clinical genetics and genomics, bioinformatics, and laboratory science.
National Leads
- Assistant National Director: Helen Shortt
- National Clinical Director: Dr Emma McCann
- National Clinical Laboratory Director: Dr Richard Hagan
The NGGO sits within the Office of the Chief Clinical Officer (CCO) in the HSE and reports through the CCO to the Chief Executive Officer and the Board of the HSE. In addition, the NGGO works closely with the Department of Health, particularly in relation to the implementation of the National Strategy.
Contact details
For more information about the work of the National Genetics and Genomics Office, email Genomics.Office@hse.ie
For press queries, please contact the HSE National Press Office by email at press@hse.ie or by phone 01 9213912
National Genetics and Genomics Office,
2nd Floor, The Brunel Building,
Heuston South Quarter,
Military Road,
Dublin 8,
D08 XO1F
Ireland.
NGGO working with other HSE divisions
The National Genetics and Genomics Office will work in alignment with existing programmes, national strategies and models of care, namely:
National Cancer Control Programme (NCCP)
The National Cancer Control Programme works with health service providers to prevent cancer, treat cancer, and increase survival and quality of life for those who develop cancer, by converting the knowledge gained through research, surveillance and outcome evaluation into strategies and actions. The NCCP is responsible for delivering many of the recommendations of the National Cancer Strategy, including those pertaining to cancer genetics/genomics. Development of cancer genetic and genomic services is a priority for the NCCP, and is recognised as a growing and integral part of cancer care, with a role across treatment, early detection and risk education.
The NCCP established the Cancer Molecular Diagnostics Advisory group to advise on the relevant cancer molecular diagnostic testing requirements to identify molecular biomarkers for diagnosis, prognosis, disease monitoring, treatment options and treatment stratification. This work aligns with the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland. A Framework for a Precision Cancer Molecular Service in Ireland has been agreed by the group which is a collaborative model and a framework for decision making for cancer molecular diagnostic tests is in place.
The NCCP Hereditary Cancer Model of Care launched June 2023 - focuses on the clinical services required for the identification of cancer predisposition and for the ongoing management of those with a predisposition.
National Women and Infants Health Programme (NWHIP)
The National Women and Infants Health Programme (NWIHP) is responsible for leading the management, organisation and delivery of maternity, gynaecology and neonatal services. The Programme aims to strengthen the services currently delivered across primary, community and acute care settings.
The NGGO is collaborating with NWIHP on the National Perinatal Genomics Service Operational Plan. The Perinatal Genomics Service helps women and their families who are at risk of having a baby affected by a rare genetic condition. This service uses advanced technology to provide an earlier diagnosis, which supports better health outcomes for the baby and parent after birth through immediate personalised, patient-centred care.
National Rare Diseases Office (NRDO)
The National Rare Diseases Office (NRDO) is committed to informing, supporting and empowering people affected by rare conditions, their families/caregivers and healthcare professionals. It is responsible for driving the implementation of recommendations in the National Rare Disease Plan for Ireland and the HSE Model of Care for Rare Diseases.
The NGGO is collaborating with the NRDO to further develop genetic and genomic services which will reduce the cost and time of testing, and improving services for the benefit of patients.
