Sara Levene, Vice Chair of The Association of Genetic Nurses and Counsellors, reflects on the role of the AGNC, leading in a time of change, and the future of the profession with increasing demand for Genetic Counsellors

Who are the AGNC?

SL: The Association of Genetic Nurses and Counsellors is an organisation that represents genetic counsellors, genetic nurses and non-medical, patient-facing staff working within the discipline of Clinical Genetics, NHS Genomic Medicine Centres and wider healthcare settings in the UK and Ireland. We are one of five constituent groups that make up the British Society of Genetic Medicine and are the UK’s leading membership organisation representing and supporting genetic counsellors. We seek to advocate for the profession, provide opportunities for professional development, lead on standards for good clinical practice and collaborate with other clinical and scientific professionals.

How has the profession changed over the years since you have been involved?

SL: There have been many changes in the time I have practiced as a genetic counsellor. The biggest change has to be the shift in clinical practice from targeted gene and chromosome testing to whole genome sequencing. Advances in technology in recent years have catalysed this, changing it really from genetics to genomics. This is the biggest change that we’re still in the middle of grappling with. The tests that clinicians are doing now can reveal a lot more information, and we can’t always be specific with people ahead of time about what we will find, so genetic counsellors have had to really adapt to this. The implications have consequences for how we take consent, how we prepare people for these tests and how we support people and their families with unexpected findings.

There have been other changes too, and it very much varies across the country to what extent these changes are happening and how quickly they’re happening, but over time, I would say genetic counsellors are becoming more and more recognised as autonomous practitioners taking on independent caseloads and liaising with multidisciplinary teams rather than assisting other clinical professionals. Of course, this varies hugely depending on the clinical set up and the resources available.

Another important change is in the training of genetic counsellors which has become organised alongside other scientific training programmes across NHS educational systems. It is fantastic that genetic counsellors have become part of that training system. Together with the genetic counsellor Registration Board, the AGNC has played a vital role in this, making a big impact on how we train and support genetic counsellors. We’re not through the woods yet on our training and self-regulation, there’s a lot of work still to be done, but there has been significant progress and I am really proud of how far we have come.

What is the global picture like?

SL: A small number of countries including the US, Canada and Australia have a well-established genetic counselling profession, and professional bodies similar to the AGNC. However, in many countries around the world, the role is yet to exist as it is recognised here.

Within the UK, it is important to increase our presence and have our voice heard, which can be a challenge as a small organisation. However, where the UK clearly leads is in our investment in genomics and the impact we are making in the global landscape of genomic research and clinical applications. Projects such as the 100,000 genome project are significantly advancing our understanding of this area of human health.

What does the future hold for genetic counselling, and where do the challenges and opportunities lie?

SL: With the mainstreaming of genomics sequencing on the horizon for the NHS, particularly the consultation on pilot plans for sequencing of newborns, we’re going to need an awful lot more genetic counsellors to be able to fulfill that demand. The number that we’re training at the moment each year isn’t going to be enough to create a pool of professionals to sustain the type of activity that the NHS would like us to provide. So, the question becomes who will provide this service, and how? If it’s not done by genetic counsellors, how can we assure the quality of provision will be consistent? Will there be risks for the patients in how they are counselled and supported? Currently we have a bottleneck situation whereby we do not have the resources to train enough people to meet demand so the challenge lies in finding ways to supercharge the training to get lots more people through at greater speed, and we are still working this out.

I am sure there would be as many visions for the future as there are genetic counsellors, so I am not saying my vision is necessarily the one that’s widely held. However, since you ask, I’d like to see a genetic counsellor in every hospital, who would work with all the other specialist clinics who are providing genetic tests, but who are not geneticists themselves.  They would provide guidance and support in the education of these professionals, interpretation of data and management of complex cases. This way you would need many more genetic counsellors to make that a reality, as currently there’s only about 300 of us.

Clinicians across different disciplines are now upskilling in genetics and genomics and in communication to patients in their care, however what makes genetic counsellors unique is their view of the whole family, their psycho-social approach, and the integration of this with scientific and medical knowledge. When a woman is told she carries the gene that gives women greater susceptibility to breast cancer, we consider the potential implications for herself; her siblings, her children, her wider family. Diagnoses of degenerative diseases such as Huntington’s disease might require specialist support in considering the implications for someone’s employment, life insurance or other financial considerations, as well as the psychosocial impact. We are always thinking about the whole person and the significant impact on that individual of finding out genetic information: their own adjustment, well-being and coping strategies, their sense of identity, their relationships, and even their work life.  At the same time, we tackle how it may affect the whole family, and the relationships within the family unit. These sorts of concerns need time to work through with experienced professionals and we don’t want to lose this person-centred, holistic approach to care as use of genetic testing increases. I think we’re at a bit of a turning point, right now, where we have to think about this so that we get it right for future patients.

Want to hear more from Sara and here peers? Explore our online exhibition Empowering People: Genetic Counselling in Focus