Pooja Dasani: The evolving role of a genetic counsellor in a genomic era
‘Accelerating genomic medicine in the NHS strategy’ summarises the vision for embedding genomics in the NHS. The role of genetic counsellors is highlighted within clinical genomics services to support the embedding of genomics across specialities through education, training and support to embed genomics in-patient pathways.
Yet as a genetic counsellor practising for over 15 years, I still find myself answering the question ‘So do you work in the laboratory?’ or ‘What is a genetic counsellor?’ on a regular basis.
In answer to the question, genetic counsellors are highly skilled health professionals with scientific and counselling qualifications, training, competency, and expertise in genomic medicine. We interpret and explain complex genomic information to patients and their families whilst exploring the impact of a diagnosis within the family and helping them to make informed autonomous decisions. We take a ‘whole family approach’ in assessing risk to relatives and support patients in family communication in the context of family dynamics.
Whilst many genetic counsellors are based in clinical practice within a clinical genetics service in the UK. Genetic counsellors in the UK also practice within areas of research, policy, education and service management professional regulation.
I believe that as genetic counsellors we bring to the genomic medicine era of complex big data and increasing technological advances a set of unique skills and experience in providing patient centric scientific information whilst managing ethical, psychosocial, and familial aspects of genomics.
It is important to highlight the difference between being a trained ‘genetic counsellor’ and ‘genetic counselling.’ ‘Genetic counselling’ is a process of communicating genomic information that can be undertaken by any healthcare professional as a part of their clinical care.
According to the Association of genetic nurses and counsellors (AGNC) there were approximately 300 genetic counsellors practicing in the UK in 2022. Although ‘The NHS long term workforce plan’ highlights the need and supports the increase for sufficient workforce in the genomics medicine service, including genetic counsellors to maximise the potential of genomics, the number of genetic counsellors in the UK remains small.
To manage the increasing demand for genetic testing, the topol review in 2019 called upon all healthcare professionals to receive training in genomic literacy and embed genetic communication in their clinical practice. The review envisaged genetic counsellors as one of the leaders to support this process.
Genetic counsellors are involved in education and supporting non-genetics healthcare professionals to be able to undertake diagnostic genetic testing through formal and information education as well as developing educational resources to support on-going learning.
With a limited number of genetic counsellors and the need to support increased genomic testing and education, the AGNC suggested an innovative route to manage this growing demand through the development of genetic counselling support roles . There are now a growing number of genomic practitioners (GenPs) and genomic associates (GenAs) being employed across the UK. These roles are often undertaken by individuals who have university level education in a genomic related field, with and interest training as genetic counsellors in the future. Therefore, do not offer genetic counselling however, they are able to support the process of genomic testing by obtain family history, health records and supporting the consent process for diagnostic genomic testing.
Although the genetic counselling profession is relatively new, genetic counsellors have been flexible and adaptive to the changing landscape of genomics through creative thinking and open to change. The role of a genetic counsellor has evolved over time from traditional clinical roles to research, policy, education which shows a breadth of our skills in supporting safe embedding of genomics in healthcare.
