Across the UK, genomic testing is increasingly embedded into routine healthcare pathways – from oncology and cardiology to pharmacogenomics and newborn screening. The NHS ten-year plan describes genomics being used in 50 percent of hospital interactions by 2035. These policies aim to integrate genomic testing into prevention, diagnosis and treatment across a wide range of specialties. As genomic testing becomes more widely used, healthcare systems face an important question: how can patients, families and clinicians be best supported to understand and use this information responsibly?
Genetic counsellors have long played a central role in helping people and their families navigate the complex clinical, psychological and ethical dimensions of genetic information. How does this work adapt as the settings in which genetic counselling takes place expand, and as resources evolve?
The Association of Genetic Nurses and Counsellors (AGNC), the professional body representing genetic counsellors in the UK, has been reflecting on this shift. In 2022, the AGNC began a strategy process to examine how genetic counselling practice is changing and how the profession can continue to contribute effectively while remaining true to its priority of patient-centred care. This resulted in a new set of Vision, Mission and Values Statements for the genetic counselling profession.
One outcome of that work is the launch of the Genetic Counsellors in the Mainstream Toolkit, designed to support specialties embedding genetics into their practice.
A changing genomic landscape
Mainstream settings such as cardiology, neurology and oncology have, to varying degrees, used genomic information to inform patient care. As genetic testing becomes more affordable and results more actionable, these tests help to confirm diagnoses, determine prognosis and guide treatment options. Pharmacogenomic testing is already beginning to inform prescribing decisions.
These developments bring enormous opportunities for patient care. However, they also raise important challenges: genomic information is complex, often uncertain, and frequently has implications beyond the individual patient. It can affect family members, raise ethical considerations, and require sensitive communication alongside psychosocial support.
Genetic counsellors are uniquely trained to address these challenges. Their role combines advanced genomic knowledge with expertise in communication, counselling and ethical practice. As genomics expands into mainstream specialties, the need for these skills has only increased. The AGNC has a subgroup of genetic counsellors already working across these mainstream and specialist areas – currently around 85 members. Their day-to-day experience, alongside collected patient stories, has helped to strengthen the toolkit.
Genetic Counsellors in the Mainstream Toolkit
Wherever they work, genetic counsellors share a common professional foundation: communicating genomic information, supporting patients and families, navigating ethical questions, and advocating for patient-centred care.
Integrating genetic counsellors across medical specialities offers several advantages over the traditional model of delivering services from centralised hubs. Embedding this expertise across a range of settings can improve access to testing, support clinicians in interpreting genomic results, and ensure that patients receive appropriate counselling and follow-up care. It can also strengthen collaboration between specialties and regional genetics services.
However, mainstream genetic counsellor roles can also present challenges. Because these positions sit outside traditional genetics services, there may be less clarity about how the role should be structured, supervised or integrated into existing teams. Healthcare organisations developing such roles may also be unfamiliar with the scope of practice and training of genetic counsellors.
The Genetic Counsellors in the Mainstream Toolkit provides practical guidance for healthcare organisations considering or implementing these roles. The toolkit is a structured resource covering what mainstream genetic counsellors do, how they fit into teams – including their relationships with specialist nurses and other healthcare professionals – what employers need to provide, NHS banding guidance, and a health economics rationale. One important aspect of the role is supporting education and training, particularly in explaining genomic scenarios and advocating for families within multidisciplinary team settings.
The toolkit also outlines the skills and competencies genetic counsellors bring, and highlights the conditions needed for these roles to succeed. It emphasises the importance of ensuring that genetic counsellors remain appropriately supported and professionally connected, even when working outside traditional genetics services.
Crucially, the toolkit is not only aimed at genetic counsellors themselves. It is primarily designed to support employers, commissioners and clinical teams who may be encountering these roles for the first time.
By providing a clear description of the value genetic counsellors bring, the toolkit aims to support the development of roles that enhance genomic healthcare while maintaining high professional standards.
Supporting a sustainable genomic workforce
The launch of the Mainstream Toolkit represents one practical outcome of the AGNC's broader strategy work.
Alongside this toolkit, the AGNC has developed a new 'Domains of Practice' framework for the profession. This has informed several other initiatives, including updates to the AGNC career structure, the development of a research strategy and work to strengthen education and training pathways for future genetic counsellors.
Together, these initiatives aim to ensure that the profession remains coherent, adaptable and able to respond to the continuing expansion of genomic medicine.
As genomics becomes increasingly embedded across healthcare, the need for professionals who can bridge the gap between scientific knowledge and patient experience will only grow. Genetic counsellors occupy a unique position at that interface.
The challenge now is to ensure that genomic healthcare systems recognise and support this expertise wherever it is needed – whether in specialist genetics services, mainstream clinical teams, research environments or community settings.
The AGNC's new toolkit is one step toward that goal.