A genetic counsellor writing out a family tree on a white board

Building a foundation for Generation Genome

Date: 22 June 2022

Two film projects explore the work and impact of genetic counsellors.

Inspiring the future genomic-literate healthcare workforce

A decade ago, the concept of personalised medicine was more familiar in the context of science fiction, rather than reality. But the world has radically changed: in recent years as new genomic technologies and techniques have evolved, so has our understanding of disease, and subsequently a new landscape for medical science and healthcare delivery is envisioned.

In 2016, the annual report delivered by the then Chief Medical Officer, Professor Dame Sally Davies, announced a new age, the so called: “Generation Genome”. By 2019, the role of genomics in modern healthcare was cemented by Matt Hancock, as UK Health Minister at the time, pledging that the “NHS must lead the world in genomic healthcare”. Concurrently, a national genomics infrastructure from NHS England emerged, in the form of the ‘NHS Genomic Medicine Service’, to facilitate these bold ambitions for genomics-led healthcare.

The future looks bright; on the face of it, genomics offers a potential panacea to many healthcare challenges faced by society today. However, to maximise full utility and reap the benefits and improvements set out in the recent reports issued by healthcare authorities, there are some glaring resource issues that must be addressed.

These are:

1. Genomics still fails to resonate with a significant proportion of the existing UK healthcare workforce;

2. The implementation of genomics into healthcare education and clinical training is slow; hindered by resource shortages, existing workforce pressures, and changing priorities prompted by the recent pandemic;

3. Career pathways are unclear, and roles related to genomic healthcare remain undefined;

4. Lack of patient trust – particularly with those disengaged with science – create barriers that require specialist skills to overcome.

These are challenges that will resonate deeply with genetic counsellors, who find themselves on the frontline dealing with the impact of an unprepared clinical workforce; yet remain misunderstood and undervalued as professionals.

The ambitions set out by Government and healthcare authorities are aspirational, but ultimately flawed without the right education and resources; training reforms; and career pathways in place to support the implementation of genomics into clinical practice.

A fundamental question: have we overlooked the value of genetic counsellors in preparing the necessary infrastructure for genomics-led healthcare?

Caught in a complex history tainted by the eugenics movement of World War Two, genetic counselling has rapidly become one of the most pivotal medical services available today; having worked hard to overcome a lack of investment and marginalisation from the main medical spheres.

Genetic counsellors already possess an understanding of genomics at the level now required across multidisciplinary healthcare professions; meaning their importance to the success of “Generation Genome” should not be underestimated. The demand for specialist skills to translate genomic principles to healthcare colleagues, as well as broaden and communicate career pathways is invaluable.

Their voices should be an integral part of educating the next generation of healthcare practitioners on the outcomes and impacts of genomic healthcare. This can be successfully achieved through initiatives that serve to translate their experiences into accessible resources for educators and trainers to use.

Two film projects, commissioned and produced by Wellcome Connecting Science, represent such resources. Collectively, they explore the work and impact of genetic counsellors, and convey the value of research in order to evolve practice. A total of nineteen films across two series, they are free, and publicly available to download and share.

“The Evolution of the Genetic Counselling Profession” shares the memories and experiences of pioneers from the field, across eleven films, showcasing how the profession has grown from humble beginnings. Reflecting on the careers of a trailblazing few, this film series traces genetic counselling from its complex start as an emerging discipline, through to present day, as a recognised medical service that uses psychology, biology, and medicine to support patients. Helping them to navigate the experience of managing their genomic information and through some of the most difficult decision making. We hear from authorities in the field, including some of the early innovators and pioneers.

As the genetic counselling profession is maturing internationally we wanted to collect and showcase some recollections from colleagues in the UK who had been involved in the early development of the profession, and some who are involved now. We are delighted to be sharing memories and telling stories to inspire the next generation of genetic counsellors.

Dr Christine Patch, Principal Staff Scientist in Genomic Counselling,  Engagement and Society, Wellcome Connecting Science

“Voices of Genetic Counsellors”, is an innovative collection of eight films demonstrating the scope of the profession through the lens of the counsellors themselves. These deeply personal narratives showcase how genetic counsellors are the linchpin of genomic medicine implementation and success.

This anthology of emotive stories demonstrates how genetic counsellors deploy specialist skills to translate complex information, enable patients to make sense of their diagnosis, and empower them to make difficult decisions that are right for them.

Voices of Genetic Counsellors - So Much More Than Just a Test 

If you are an educator, or a genetic counsellor involved in training healthcare colleagues, these films are an excellent toolkit to use within your own teaching assets, to enable your students to step into the shoes of a genetic counsellor.

Whether watched in sequence, or used as standalone resources, they all demonstrate the breadth of career pathways available, and have the power to inspire a new generation of genomic-literate professionals.