Beyond the clinic: Celebrating the evolving role of Genetic Counsellors in genomics

From awareness to appreciation

This November marks Genetic Counsellor Appreciation Day. The change from awareness day to appreciation day might seem small, but I think it matters.

Not only should we understand what genetic counsellors do, but we should also recognise the contribution they make across healthcare, research, education, policy and communities.

As the new Chair of the Association of Genetic Nurses and Counsellors (AGNC), I am particularly pleased to mark that contribution this year.

I am also writing as a genetic counsellor and Director of Equity Assurance at Genomics England. Here, I see first-hand how important it is to connect genomic research with the experiences, questions and priorities of the people who take part.

Putting people at the centre

Genomics can provide important information about health, but genomic information is never just data.

It can raise questions about identity, culture, health, family relationships and the future. A result from a genomic test may have implications not only for one person, but also for their relatives.

Genetic counsellors bring together knowledge of genomics with counselling, communication and ethical practice. Their role is not simply to explain a test or result. They help people understand what genomic information could mean for them, consider uncertainty, and make choices that reflect their own circumstances and values.

The AGNC have consistently identified this combination of genomic knowledge, counselling expertise, ethical practice and patient advocacy as part of the shared professional core of genetic counselling.

That expertise matters wherever genomics meets people.

Genetic counsellors work in more places than you think

Many people associate genetic counsellors with NHS clinical genetics services. These services remain an important part of the profession, but genetic counsellors work much more widely as well.

Over recent years, the AGNC have supported genetic counsellors working across regional genetics services, mainstream healthcare, research and academia, education, policy, private organisations, and charities and communities.

That type of diversity tells us something important.

The contribution of a genetic counsellor is not defined only by where they work. It is also about the expertise and perspective they bring.

In research, genetic counsellors can help researchers consider the experience of participants and families. In education, they help build genomic knowledge and skills across the health workforce.

In policy and service development, genetic counsellors bring together an understanding of genomic science, clinical practice and patient experience. And in community and charity settings, they support people beyond formal clinical encounters, and help connect communities with healthcare and genomic information.

My own work spans these settings. Alongside my role at Genomics England, I contribute to research projects such as Black Health Legacy at Queen Mary University of London, bringing a genetic counselling perspective to study design, participant information and community engagement. I also teach and supervise trainee genetic counsellors, at the University of Manchester. These are different ways of drawing on the same professional foundations: genomic knowledge, communication, ethical practice and attention to people’s experiences.

This breadth is something worth celebrating.

Why genetic counsellors matter for research

Patient-centred genomics should not begin when we return a result. It needs to start much earlier.

We should think about people when we design research questions, develop information and consent processes, decide how to communicate uncertainty, and consider what findings might mean for participants and families.

Genetic counsellors can contribute to all of these conversations.

For organisations such as Genomics England, this perspective can help connect scientific ambition with the experiences of participants and research communities.

The distinctive strength of genetic counselling is its ability to work across those perspectives while keeping sight of what genomic information means for people.

A profession that is evolving with genomics

Genomics is changing quickly, and genetic counselling is changing with it.

As genetic counsellors have increasingly begun to work beyond traditional genetic services, the AGNC have started work to map the profession. The resulting framework recognises that genetic counselling now contributes across clinical care, research, education, community work and policy.

For me, that creates an important challenge for the next phase of the profession.

We need to ask not only “Where are genetic counsellors working?” but also “Where could genetic counselling expertise make a difference?”

That might be in a more traditional areas like clinical services, but also be within research programmes, charities, policy teams, population genomics initiatives, or teams designing a new genomic pathway.

Appreciation should mean opportunity

The move from Awareness Day to Appreciation Day is timely. Appreciating a profession means more than thanking the people doing the job, it means recognising their expertise, and involving them in the conversations where that expertise matters. It means creating opportunities for that expertise to develop as genomics itself develops.

For genetic counsellors, that means continuing to deliver excellent care while also contributing to the research, services, policies and programmes that will shape the future of genomics.

So, on Genetic Counsellor Appreciation Day, I want to say thank you to genetic counsellors working across the UK and beyond.

I also want to thank the patients, research participants, families, communities and organisations who work alongside us. They continually challenge us to listen, learn and improve.

Genomic science will continue to change. Our responsibility is to make sure that as it does, we never lose sight of the people whose lives sit behind the data. Genetic counsellors have an important part to play in making that happen.

You can learn more about genetic counsellors via the Association of Genetic Nurses and Counsellors website.

You can also read more about the work happening at Genomics England by checking out our other blogs.