Foreword

1. Introduction

1.1 Intended audience

• senior strategic and operational nursing and midwifery leadership within the NHS
• nursing and midwifery educators 

1.2 Purpose

• to provide a current status overview of genomics in nursing and midwifery practice
• to detail the actions required over the next 3 years to develop a genomically competent nursing and midwifery workforce, irrespective of role or area of practice; this will run concurrently with the 5-year Genomics strategy (published 2022)
• to build on ambitions detailed within related policy and strategic publications, including the 10 Year Health Plan for England: fit for the future (gov.uk), Rare diseases framework, Genome UK: the future of healthcare and the NHS Long Term Workforce Plan

It is recognised that the framework may require amendment to better align with the 10-year Workforce Plan when published.

1.3. Strategic aims

The framework has 4 strategic aims that have been adapted from NHS England’s Genomics Education Programme (GEP): 

• integrate awareness of genomics as part of nursing and midwifery practice
• identify nursing and midwifery genomics workforce needs
• build and join networks
• educate and develop the nursing and midwifery workforce

1.4 Why this framework is needed now

Over the last decade, genomics has become an increasingly important and integral part of healthcare. More than 800,000 genomic tests were delivered by the NHS Genomic Medicine Service in 2024/25, with nurses and midwives providing mainstreamed genomics services, and support for patients and their families, predominantly concentrated in specialist areas such as oncology, cardiology, neurology and perinatal care.
Genomics-informed healthcare is anticipated to expand as more genomic tests and clinical indications become available over the next 5 to 10 years, potentially facilitating new therapies and uses of genomic informed healthcare interventions.  NHS nurses and midwives form the largest professional group in the NHS and are therefore pivotal to the successful, equitable provision of genomics (as illustrated in the case studies in appendix 1) and this will only increase with the projected growth of genomics as a standard and increasingly important component of NHS care. Therefore, all nurses and midwives who have not undertaken the training to become genetic counsellors will still require the ability to identify patients who may be at risk of a genomic condition and be able to initiate genomic discussions by integrating genetics into their practice and referring on as appropriate.
The ability of newly qualified nurses and midwives to become non-medical prescribers early in their career will increasingly require them to be genomically literate. For example, they will need to understand the use of pharmacogenomic tests to guide medication or dosing decisions.

Multidisciplinary collaboration is essential for full integration of genomics into the NHS, including across nurses, midwives, other clinicians such as doctors and pharmacists, and specialist colleagues within genetics, laboratory and bioinformatic sciences.

This framework recognises the successes of a number of specialist nurses and midwives who have developed genomic competence to provide mainstreamed genomics. These successes in distinct specialties, sectors and geographies now need to be expanded across the healthcare service to enable an increase in the awareness of, and engagement with, genomics in the whole nursing and midwifery workforce.

The nursing and midwifery genomics framework is intended to support all registered nurses and midwives, registered associates and nursing and midwifery support workers.

1.5 The role of nurses and midwives in accelerating genomics in the NHS

The requirements to deliver the expansion of genomics in the NHS are covered in the  10 Year Health Plan for England: fit for the future (gov.uk) and the Accelerating genomic medicine in the NHS strategy.

Many of the skills nurses and midwives already possess can be applied to the delivery of safe and effective genomics-informed care. In addition, as genomics is increasingly introduced into new clinical pathways, it will become essential that all nurses and midwives develop a core foundational level of genomics knowledge and related skills in line with their role and practice area. This will enable them to undertake “genomic conversations” with their patients and enable access to genomic-informed care in a mainstream setting, for example, by the offering of genomic testing, conducting and facilitating genomic testing through consultation, consent, sample collection, result interpretation, and follow-up care.

It is recognised that across the nursing and midwifery workforce, there will be variations in the levels of genomics knowledge required. Nurses and midwives who practice in either genomically developed clinical areas or early implementation areas, which translate research into practice, may require additional expertise and specific competencies tailored to their roles.

Examples of how nursing and midwifery professionals are already involved in the mainstreaming of genomics in the NHS are provided in appendix 1.

1.6 Using the nursing and midwifery genomics framework

Effective senior strategic and operational leadership will be required to support development of necessary infrastructure to integrate genomics into the nursing and midwifery workforce. 

It’s anticipated that the strategic aims outlined in this framework will evolve to align with service and workforce development and the refinement of professional roles and responsibilities required to embed genomics-informed healthcare. Expertise from multiple stakeholders, including those who are part of the NHS Genomic Medicine Service (see appendix 3), will continue to be required to support the implementation and growth of genomics across healthcare including the development of relevant education and training resources. 

This framework may be used by a number of audiences to support the nursing and midwifery workforce, for example:

• employing organisations of NHS health and care staff may wish to leverage this framework in combination with the 10 Year Health Plan for England: fit for the future (gov.uk) and Accelerating genomic medicine in the NHS strategy to effectively and safely define and implement new roles and augmenting existing roles, and refining job plans and descriptions to futureproof genomics delivery
• educators in undergraduate and postgraduate nursing and midwifery courses should review their current curricula against this framework and the Nursing educator’s toolkit (Genomics Education Programme) to support the delivery of genomics education to the current and future workforce and interpretation of the Nursing and Midwifery Council standards  at the point of registration. These standards apply to all registered nurses, midwives and associate nurses practising in any clinical speciality or area of practice
• it is hoped that NHS organisations will use aspects of the framework to guide education and training to enable their nursing and midwifery support worker workforce to explore development pathways in relation to the requirements of their role, including career opportunities beyond level 4. This will include roles such as maternity care assistants, maternity support workers, assistant practitioners and health care assistants

1.7. The NHS England Genomics Education Programme

The content of this framework is underpinned by the NHS England Genomics Education Programme’s 4 strategic aims. These have been adapted for the nursing and midwifery workforce. 

Close collaboration exists between the NHS England Genomics Education Programme, national NHS England nursing and midwifery clinical genomics leads, the NHS Genomic Medicine Service and other stakeholders, including higher education institutes, partner organisations, professional groups and specialties, and subject matter experts. This joint working provides profession and role-specific education and training packages.

1.8. NHS England nursing and midwifery networks for genomics

The NHS England Genomics Unit has 3 key national networks for genomics in nursing and midwifery. The Midwives in Genetics and Genomics Network (MiGGs) and the Nurses in Genomics and Genetics Network (NGNs) provide a national network for nurses and midwives who are interested in or already providing genomics-informed care:

• Midwives in Genetics and Genomics Network (MiGGs.net)
• Nurses in Genomics and Genetics Network (NGNs.net)
• Nursing and Midwifery Genomics Workforce, Education, and Training Group (NMGWET)

Membership of the nursing and midwifery networks encompasses qualified postgraduate nurses and midwives, charities, and genomics leaders from all levels within the professions, along with representatives from educational bodies. Both networks are governed via NHS England’s Genomics Unit reporting structure and their aim is to foster collaboration and develop ideas that are scalable for the nursing and midwifery workforce at all levels and practice environments.  

These networks include the following key priorities:  

• detail the support and approaches required to develop genomic literacy and competence in specialist and non-specialist nurses and midwives across different clinical practice environments and stages of education and training
• provide a forum for national collaboration and co-ordination of nursing and midwifery genomics related education
• support development of competency frameworks relevant to the nursing and midwifery workforce, including recommendations on the role of both professions in genomics (via additional working groups)

Implementation of this framework will be led by the NHS England clinical genomic nursing and midwifery leads, through the national midwifery and nursing networks and overseen by the national nursing and midwifery genomics workforce, education and training group, chaired by deputy directors for nursing research and system transformation within the Office of the Chief Nursing Officer. The membership of the national network includes the NHS Genomic Medicine Service nursing and midwifery leads and the workforce, education and training group will include representation from other regulatory, professional and commissioning leadership. This work is also supported by the national professional nursing and midwifery lead for genomics with active engagement and support from senior nursing and midwifery leadership across the NHS. 

2. The strategic framework

2.1. Strategic aim 1: integrate awareness of genomics as part of nursing and midwifery practice 

Why is this important now?

The rapid expansion of genomics into many specialities of healthcare will make it increasing important for the nursing and midwifery workforce to have a core foundational level knowledge of genomics. 

What do we need to achieve our aims?

Present (0 to 12 months)

• National and regional lead nurses and midwives will continue to engage with senior nursing and midwifery leaders and commissioners at both national and regional level to ensure raising awareness of genomics, and inclusion in local policy, education and training plan to support the expansion of genomic mainstreaming.
• National and regional lead nurses and midwives will continue to engage with nurses and midwives who are working operationally or in management positions at national and regional level to continue raising awareness of genomics and support the expansion of genomic mainstreaming.
• Continued work with NHS England’s Chief Nursing Officer, Chief Midwifery Officer and the NHS England Genomics Education Programme, and wider workforce and training directorate to embed genomics needs into nursing and midwifery workforce planning and development and the 10 Year Workforce Plan when published.
• Education and training resources to be promoted and shared by the nursing and midwifery genomics networks membership to the wider workforce and clinical networks.

1 to 3 years

• National and regional Genomic Medicine Service lead nurses and midwives to continue to highlight the significance and relevance of genomics in nursing, midwifery and multi-professional teams, using best practice case studies as examples.
• National and regional Genomic Medicine Service lead nurses and midwives to continue working with stakeholders, including Royal Colleges, organisations, such as the Association of Genetic Nurses and Counsellors, and third sector organisations to advocate the value of nursing and midwifery engagement and inclusion in genomics provision.
• National and regional Genomic Medicine Service lead nurses and midwives to support and advocate the role of nursing and midwifery in genomics locally and nationally. Support senior nursing and midwifery leaders and commissioners across the NHS to develop organisational plans with sufficient strategic and operational investment to develop a genomically competent nursing and midwifery workforce.
• Through the membership of the national nursing and midwifery genomics workforce, education and training group and the nursing and midwifery networks to develop and introduce feedback mechanisms from regional clinical genomics services to identify increases in the number of nurses and midwives submitting appropriate clinical referrals or queries.

Ongoing

• Lead nurses and midwives across the NHS Genomic Medicine Service to:
  • support an increase in genomic champion roles which should be aligned to the NHS England Genomics Education Programme’s genomics advisor competency grid and the 10 Year Health Plan for England: fit for the future (gov.uk)
  • all new or amended roles should be reported to the NHS England Genomics Unit through the quarterly workforce, education and training template, and inform the Nursing and Midwifery Genomics Workforce, Education and Training Group.
  • work with directors of nursing and midwifery and practice development leads to develop and refine genomic practice development opportunities.

What tools and resources will we use to achieve our aims?

• The national nursing and midwifery genomics networks provide a forum for peer support, engagement, communication and partnership working.
• The national Nursing and Midwifery Genomics Workforce, Education and Training Group will provide a platform for engaging with non-genomics experts and genomics experts to identify gaps in genomics education and training and agree steps to mitigate these gaps.
• Use of social networking and digital platforms to facilitate communication and awareness of resources available from NHS England to the nursing and midwifery workforce.

What will success look like?

• The NHS England clinical nursing and midwifery leads, NHS Genomic Medicine Service lead nurses and midwives and senior nursing and midwifery leadership in NHS trusts and commissioning organisations will be increasingly visible in wider healthcare forums as they drive genomics integration across clinical, educational and strategic settings.
• Regional and network feedback will indicate that increasing numbers of nurses and midwives are developing genomics knowledge and understand its importance in their clinical arena. The success criteria will continue to be measured and reported by the NHS Genomic Medicine Service to NHS England’s Genomic Unit via the workforce and education training template during contract meetings.
• By 2026/27, regional genetics services will be required to report the requestor’s professional background and therefore provides the ability to gather information on whether there are increasing numbers of appropriate, timely clinical referrals or queries submitted by nurses and midwives.
• Regional feedback from NHS Genomic Medicine Service and via the nursing and midwifery national genomics networks will show that, during each year of the life of this framework, there will be increasing numbers of NHS trusts and organisations which include genomics in their nursing and midwifery appraisals and continuous professional development processes and in specific induction processes as appropriate.

2.2 Strategic aim 2: identify nursing and midwifery genomics workforce needs

Why is this important now?

The role of genomics in the NHS is increasing rapidly and will require the nursing and midwifery workforce to have the appropriate knowledge and skills for their role and area of practice. 

What do we need to achieve our aims?

Present (0 to 12 months)

• The national lead nurse and midwife, in conjunction with the nursing and midwifery genomics national networks and wider stakeholder groups to identify any gaps in the genomics education and training needed for current roles. This should consider all areas and levels of practice.
• The national lead nurse and midwife, in conjunction with the Genomics Education Programme will establish a nursing and midwifery genomics workforce, education and training group, aligned with the national nurses and midwifery genomics networks.
• The national and regional Genomic Medicine Service lead nurses and midwives will work with the NHS England Genomics Education Programme to develop resources to address any gaps identified.

The Genomics Education Programme will lead the work, in collaboration with the national and regional Genomic Medicine Service lead nurses and midwives, to develop and amend existing nursing genomic competencies to identify the knowledge and competency requirements for general and specialist nursing and midwifery roles to inform workforce planning.

1 to 3 years

• Within 2026/27, develop a tool, in conjunction with the nursing and midwifery genomics national networks and wider stakeholder groups, to identify any capacity, knowledge or capability gaps that limit or prevent the wider integration of genomics across the nursing and midwifery workforce. This needs to recognise these are likely to vary by geographical and practice area and specialism. The tool should be implemented and an evaluation report available by the end of 2027/28.
• Continue to review requirements for specialties already using genomics as a component of advanced practice, such as those where precision medicines are provided in line with genomic test results, by the end of 2026/27.
• Work with stakeholders to consider future roles for nurses and midwives and define what knowledge, skills and associated education and training is required to deliver safe and effective care to patients by 2026/27.

Ongoing

• Collaborative work between NHS Genomic Medicine Service lead nurses and midwives and the NHS England Genomics Education Programme to identify the nursing and midwifery workforce’s requirements in terms of infrastructure, leadership, education and training to ensure effective delivery of genomics to meet current and emerging service needs. 

What tools and resources will we use to achieve our aims?

• NHS England Genomics Education Programme nursing and midwifery competencies to inform the needs of nurses and midwives working at novice or entry level practice.
• Develop nursing and midwifery advanced practice specific competencies in cancer and rare and inherited diseases.
• Identify new applications for the National genomics test directory that may impact the nursing and midwifery workforce and ensure appropriate resources are developed to support these.
• Use the benchmark information developed by University of West of England and published by Carpenter Clawson et al (2023) which illustrates the different learning styles preferred and used by nurses and midwives commencing the postgraduate course in genomic medicine: Frontiers – Competencies of the UK nursing and midwifery workforce to mainstream genomics in the National Health Service: the ongoing gap between perceived importance and confidence in genomics.
• NHS commissioners, including integrated care boards and NHS England, should develop processes to record nurses and midwives who provide any genomics-related care as part of routine workforce data collections across all care settings and roles.
• The NHS Genomic Medicine Service should continue to complete the workforce and training template, as indicated in the NHS England business planning guidance to continue to report on the development and inclusion of all staff, including nurses and midwives, and highlight the establishment of any new or amended roles.

What will success look like?

• Clear identification of education and training needs for the nursing and midwifery workforce across all areas of practice.
• Development of targeted and differentiated education and training resources reflecting the educational needs of nurses and midwives in different care settings.
• Auditable, multi-professional clinical genomic end-to-end care pathways.
• Effective workforce planning informed by robust workforce data.

2.3 Strategic aim 3: build and join networks 

Why is this important now?

We cannot underestimate the value of profession-specific and multi-professional networks for providing peer support and sharing best practice, resources and updates to support the wider integration of genomics.

These networks will play an increasingly essential role in shaping genomics practice and education both nationally and regionally. The nursing and midwifery networks, along with national and regional patient and public involvement groups, should ensure patients’ voices guide developments in nursing and midwifery genomics practice. 

What do we need to do to achieve our aims?

Present (0 to 12 months)

• Continued growth of the established national networks (NGNs.net and MiGGs.net) to share learning and ideas and embed genomics at scale in collaboration with the NHS England Genomics Education Programme.
• Establish a workforce, education and training network to align with the needs of the nursing and midwifery networks.
• The NHS Genomic Medicine Service nursing and midwifery leads to further develop condition-specific communities of practice, which should include patient and public participants.
• Further develop the links to existing networks for midwives in screening, fetal medicine, maternal medicine and maternity bereavement services by aligning genomic initiatives that share common goals and intersections. Use these improved links to enhance support to midwives, bereaved parents and their families.
• Continue to work with the Institute of Health Visiting to expand their genomics offer to health visiting services.
• Enable the development of relevant communities of practice in children’s nursing, including for health visitors and school nurses.
• Continue to collaborate with professional groups across nursing practice to develop a genomics education network that maximises learning and peer support while minimising duplication.
• Continue to collaborate with third sector and voluntary organisations across nursing practice such as Macmillan and the British Heart Foundation, to develop a genomics education network that maximises learning and peer support while minimising duplication.
• Work closely with existing or evolving professional nursing and midwifery networks, such as the Royal College of Nursing and the Royal College of Midwifery to emphasise the relevance of genomics to their membership and incorporate genomics into their objectives and priorities.
• Forge stronger relationships with clinical networks to collaborate on the development of standardised resources that can be shared across the NHS eco-system, professional groups and charities by the end of 2026/27.

1 to 3 years

• Further develop national and regional (NHS Genomic Medicine Service led) communities of practice in children’s nursing, specialist community public health nurses (health visitors, school nurses and looked-after children nurses), mental health, community and primary care, prison and armed forces health. Link into national programmes within these nursing and midwifery areas of practice and existing multi-professional networks.

Ongoing

• To continue networking with Genomics England Ltd to support the Generation research study, supporting midwives to roll out the study and nurses who support the families during and following the testing and treatment of any baby who receives a ‘condition suspected’ result.
• Continue building engagement and support of genomics through nursing and midwifery leadership across the NHS eco-system to encourage more nurses and midwives to integrate genomics within their practice. Professional leadership will require an investment of time and resource development to support genomics integration across all levels of the professions. 

What tools and resources will we use to achieve our aims?

• Nationally supported resources will be promoted and shared by the network membership to the wider workforce and clinical networks.
• Existing network relationships will enable continued collaboration across professional and multi-professional forums.
• The Chief Nurse and Midwifery Advisory Group with representation from NHS provider trust directors of nursing and midwifery and integrated care boards chief nurses to focus on system-wide initiatives and offer guidance and advice on nursing and midwifery initiatives generated by the national nursing and midwifery genomics network groups respectively.
• NHS Genomic Medicine Service business planning reporting will enable learning from existing work by nurses and midwives.

What will success look like?

• A collaborative, strategic network established between Chief Nursing Office, NHS England Genomics Education Programme and the Genomics Unit to maximise the opportunities for embedding genomics into nursing and midwifery practice and to consider mitigatory actions to any identified barriers.
• National, regional and local network developments to shape practice for the nursing and midwifery workforce and drive the priorities as described in this framework.
• Increased diverse membership in national and regional nursing and midwifery genomics networks that reflect the impact and spread of genomics across settings and relationships with other specialist networks, agencies and Royal Colleges (for example, Royal College of Nursing, Royal College of Midwives, Royal College of Obstetricians and Gynaecologists).
• Ensuring the integration of genomics into new or established communities of practice, requiring active support from the NHS Genomic Medicine Service national and regional nursing and midwifery genomics leads.
• Regional NHS Genomic Medicine Service and nursing and midwifery network feedback reporting that genomics featuring in NHS organisational education and training curricula objectives and priorities.
• Clinical and educational networks that can demonstrate the increasing integration of genomics as a business-as-usual activity, using inclusive approaches and diverse perspectives.

2.4 Strategic aim 4: educate and develop the NHS nursing and midwifery workforce in genomics

Why is this important now?     

To deliver genomics-informed care, nurses and midwives must have the necessary knowledge, skills and experience, which is dependent on the education, training and support they receive. Core genomics concepts should be integrated throughout the professions’ pre and post-registration education, with additional role-specific education as needed for specialist nurses or midwives. 

What do we need to achieve our aims?

Present (0 to 12 months)

• The national and regional Genomic Medicine Service lead nurses and midwives will continue to encourage use of existing free, flexible, online and in-person education and training and resources to support learning (see appendix 2), webinars and conferences, including those developed by professional bodies such as the Royal College of Nursing, Royal College of Midwifery, Institute of Health Visitors, Royal College of Obstetrics and Gynaecology, Royal College of Physicians of London, UK Oncology Nursing Society.
• The workforce, education and training group will ensure the alignment of core genomics knowledge, skills and experience standards for nursing and midwifery professionals to those used in other professions, achieved through the leadership of nurses, midwives and genomic leaders representing professional, educational and regulatory bodies, as well as representation from across sectors and professions.

1 to 3 years  

• The workforce, education and training group will support the NHS England Genomics Education Programme in the review, development and implementation of standardised genomics learning outcomes and practice indicators to inform the undergraduate and postgraduate nursing and midwifery courses, to enable students to meet Nursing and Midwifery Council standards at the point of registration. This may, in the longer term, lead to development of an indicative genomics curricula for nursing and midwifery undergraduate and postgraduate curricula.
• Start exploring the potential of formal credentialing in genomics for nurses and midwives working at an advanced level with the Nursing and Midwifery Council.
• Successfully embed genomics into continued professional development/and revalidation processes by 2026/27 in a minimum of 1 NHS trust per NHS Genomic Medicine Service geography, with numbers increasing year on year.
• Increase availability and visibility of genomics good practice exemplars and case studies in nursing and midwifery practice, offering practical guidance on applying genomics to clinical care. These should be published on NHS Genomic Medicine Service websites and the NHS England Genomic Education programme website ongoing from 2026/27.
• Develop and use evidence-based, validated and approved tools and resources to guide developments in clinical and educational service provision in the NHS.
• Recommend integration of the Primary care and general practice nursing career and core capabilities framework with this Nursing and midwifery genomics framework by primary care commissioners and providers to increase genomics visibilities in primary care.

Ongoing

• Continued collaboration across lead nurses and midwives in the NHS Genomic Medicine Service to monitor data that indicates the wider integration of genomics into specific existing and new clinical pathways.

What tools and resources will we use to achieve our aims?

• The Workforce, Education and Training Group will work collaboratively with professional bodies and stakeholders to co-design professional standards.
• Working with the Nursing and Midwifery Council to increase the visibility and specificity of genomics in undergraduate and postgraduate educational requirements and professional standards.
• NHS England Genomics Education Programme educational resources and courses to facilitate the delivery of genomics education and training for generalist and specialist level, for example, GeNotes (see appendix 2).
• Collaborate with the NHS England Genomics Education Programme to identify website data analytics that may potentially be available from changes to their website. Any user activity data should inform NHS England Workforce Directorate and the Genomics Unit to guide strategic planning.
• The Royal College of Midwives and Royal College of Obstetricians and Gynaecologists introductory learning programme for genomics for midwifery professionals.
• Royal College of Nursing learning resource on genomics and discussion forum for informing nursing professionals.

What will success look like?

• Support for educators and mentors delivering genomics as part of nursing and midwifery undergraduate and postgraduate training programmes, such as the availability of an educator’s toolkit using case studies.
• Increasing integration and mainstreaming of genomics within nursing and midwifery care delivered by a competent workforce.
• Reporting through the NHS Genomic Medicine Service business planning deliverables to monitor and report changes in nursing and midwifery genomic literacy as part of the workforce, education and training provision.
• Visible and focused genomics leadership at each level of the system.
• Increasing numbers of nurses and midwives applying for and successfully completing genomics-related formal and informal education.
• Council of Deans for Health endorsing genomics with educators in academic institutions and delivering genomics within any accredited curricula at undergraduate and post graduate levels.
• Support the NHS England Genomics Education Programme to further engage with, and work with, the Council of Deans for Health to explore options for inclusion of genomics in assessments and practice outcome measures in nursing and midwifery undergraduate and postgraduate courses.
• Cascade genomics within the NHS using a train-the-trainer approach provided by clinical NHS nurses and midwives, supported by the NHS England Genomics Education Programme.
• Increasing numbers of nurses and midwives in leadership or advanced practice roles, guiding and influencing local decisions and engaging with genomics research, both as evidence users and contributors.

Appendix 1: case studies to demonstrate how nursing and midwifery professionals are supporting the mainstreaming of genomics in the NHS  

Appendix 2: Genomics education and training resources

NHS England: NHS Genomic Medicine Service

NHS England: National genomic test directory

NHS England Genomics Education Programme: Welcome to Genomics Education Programme

1. “Bite-sized” learning:

• bitesize genomics series
• core concepts animations
• personalised medicine short films

2. Genomics 101 courses – these courses take about 30 minutes and issue a certificate of completion:

• Genomics in healthcare
• From genes to genome
• Taking and drawing a genetic family history
• From gene to protein
• Inheriting genomic information
• Talking genomics
• Dominant, recessive and beyond: How genetic conditions are inherited
• Investigating the genome part 1: the process
• Investigating the genome part 2: the tests

3. Nursing and midwifery genomics education passports

• New genomics learning passport for nurses – Genomics Education Programme
• Genomics learning passport for midwives – Genomics Education Programme

4. Online courses and expert webinars:

• National Genomics Education programme: The LinkAGE (Linking Academia and Genomics Education) webinar series
• St George’s University Hospital and St George’s, University of London: The genomics era: the future of genetics in medicine
• University of Exeter: Genomic medicine: transforming patient care in diabetes
• Each NHS Genomic Medicine Service website will contain education and training resources, regionally and nationally applicable

5. GeNotes: Genomic notes for clinicians has quick, concise information to help healthcare professionals make the right genomic decisions at each stage of a clinical pathway.

6. Masters in genomic medicine framework:

• continued personal and professional development (CPD) modules for postgraduate certificate or diploma or a full master’s degree
• NHS professionals can apply for course funding, which is currently available for standalone CPD modules. Please refer to the NHS England Genomics Education Programme for further information about funding a Master’s in genomic medicine.

Appendix 3. NHS Genomic Medicine Service

The NHS Genomic Medicine Service is currently made up of:

• NHS England Genomics Unit
• NHS England National Genomics Education programme
• NHS Genomic Medicine Service regions, which include the NHS genomic laboratory hubs
• 17 NHS clinical genomics services
• 26 cellular pathology genomics centres

The 7 NHS Genomic Medicine Service regions are set out below:

• Central and South
• East
• North East and Yorkshire
• North Thames
• North West
• South East
• South West

Appendix 4. development of the nursing and midwifery genomics framework

The development of this framework has involved extensive engagement and consultation, led by the NHS England Genomics Unit and their nursing and midwifery clinical leads, as well as the professional lead for nursing and midwifery (genomics). This included the NHS England national Genomics Education Programme, the Chief Nursing Officer, and Chief Midwifery Officer for England.

Feedback from the NHS Genomic Medicine Service Alliance lead nurses and midwives and wider stakeholders were sought, including a roundtable event for in-depth discussions to explore:

• the required needs, skills and competencies required for the nursing and midwifery workforce to deliver current and potential future clinical genomics pathways
• upskilling requirements for the nursing and midwifery workforce, including creation of professional genomics networks
• requirements to ensure all nurses and midwives can increase their genomic literacy in all practice settings

This framework will be closely aligned with the ambitions and priorities of the Chief Nursing Officer (CNO) for England and their associated deputies, including the Chief Midwifery Officer for England to ensure this framework aligns with priorities for nursing, maternity and newborn care.

Appendix 5. Glossary

Clinical geneticist: a medically trained doctor who specialise in rare genetic conditions and the techniques needed to investigate them.

Gene: are key to cellular form and function. Changes within genes can lead to the molecules they code for not functioning correctly or not being formed. Most functional variants in the genome that have been identified are within genes. The majority of rare diseases are caused by variants in genes.

Genetics: the study of a single gene and its role in inheritance, to determine the impact (or lack of impact) of a change (variation) in a single gene when determining the cause of a health condition.

Genomics: the study of an individual’s genes (ie their genome) and how the genes interact with each other and the environment. Generally studied in more complex diseases or conditions, such as cardiac disease, asthma, diabetes, and cancer as these are typically caused through the interplay between the individual’s environmental and more than 1 genetic factor. This term is also used when talking about related laboratory and bioinformatic techniques.

Genomic medicine: genomic medicine (or healthcare) is the use of genomic information and technologies to determine disease risk and predisposition, diagnosis and prognosis, and the selection and prioritisation of therapeutic options.

Inherited condition: a condition caused by a genetic variant that has been passed down from parent to child. Inherited conditions include those that are classed as rare, such as Lynch syndrome, and those that are more common, such as sickle cell disease. If a condition is found to have been inherited, this information can help to identify other family members who may also have the genetic variant and inform their screening, management and treatment.

Mainstreaming: The offer and performance of genomic testing by appropriately trained and skilled professionals in every clinical speciality across the health system at primary, secondary and tertiary levels.

National genomic test directory: a directory that specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available and the patients who will be eligible to receive each test.

NHS England Genomics Education Programme: exists to deliver and advise on learning and development opportunities that prepare current and future NHS professionals to make the best use of genomics in their practice.

NHS Genomic Medicine Service (GMS): responsible for overseeing and co-ordinating the embedding of genomics into mainstream clinical care, and for co-ordinating genomic testing laboratory services, across England.

Personalised medicine or precision medicine: health care targeted towards an individual or group of individuals, which uses knowledge of genetic, environmental and lifestyle factors to determine suitable methods of prevention, diagnosis and treatment of disease.

Pharmacogenomics: testing for genomic variants to inform personalised prescribing decisions through insights into how an individual may respond to a medicine, including to reduce the risk of adverse drug reaction (ADR), such as with specific systemic anti-cancer therapy (SACT) medicines.

Rare and inherited disease: a disease that affects less than 1 in 2,000 of the general population (EU definition). In the UK, approximately 3.5 million people will be affected by a rare disease at some point in their life.

Sequencing: DNA sequencing is the laboratory technique to determine the exact sequence of nucleotides, (or bases), in a DNA molecule. The sequence of the bases (often referred to by the first letters of their chemical names: A, T, C, and G) encodes the biological information that cells use to develop and operate.

Solid tumour: is a mass of abnormally growing cells in an organ which is free of fluid or cysts and can be benign, pre-cancerous or malignant. Solid tumours represent approximately 90% of adult human cancers.

Source: Genomics glossary – Genomics Education Programme

Publication reference: PRN01575