Tracking the development of the Genetic Counsellor role

In 2020 the Wellcome Connecting Science Engagement and Society team explored the role of the genetic counsellor through the voices of those working in the field today. Through their personal stories, the Voices of Genetic Counsellors film series highlighted the skills, expertise, and impacts of the genetic counselling profession. These voices demonstrated the demand for the service, the importance of capacity building, and the value of research to evolve clinical practice.

This year, the WCS Engagement and Society team are taking a step back to explore the early pioneers of this significantly important profession, through a new film series, ‘The Evolution of the Genetic Counselling Profession’.

Christine Patch, Principal Staff Scientist in Genomic Counselling for the WCS Engagement and Society team, and Clinical Lead for Genetic Counselling at Genomics England, will lead a series of interviews with founding professionals of the field to piece together the history and evolution of genetic counselling.

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. The people in the films you will see are just a very small number of all the individuals who have worked so hard for the profession over the years. We are delighted to be sharing memories and telling stories to inspire the next generation of genetic counsellors.

Christine Patch – Principal Staff Scientist in Genomic Counselling for the WCS Engagement and Society team, and Clinical Lead for Genetic Counselling at Genomics England

In its infancy genetic counselling was perceived as a form of social care support to help patients work through their family genetic issues, using the disease registers. Now, thanks to the tireless efforts of these early innovators, it has evolved alongside biological medicine to enable patients to directly benefit from genomic-led medicine.

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; and yet it remains misunderstood by many. Through the memories and experiences of a trailblazing few, these interviews aim to showcase how the profession has grown from humble beginnings into the internationally recognised field it is today; spearheading the implementation of genomics into clinical practice.

In the first of ten films, Chris Patch speaks to the “Grandmother of Genetic Counselling”, Professor Lauren Kerzin-Storrar, to explore her personal journey into genetic counselling. Shared memories of the early days, working as part of a small community on the periphery of medical science and healthcare, Lauren demonstrates how far the profession has come thanks to a dedicated few.

It was like a lightbulb moment…I had always been interested in genetics, so immediately I knew this was the career path I had to take.

Professor Lauren Kerzin-Storrar

She reflects on those clinical geneticist who inspired her own career, and helped to rapidly evolve genetic counselling, including Rodney Harris and Peter Harper.

Through Lauren’s extensive insights we trace 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 through some of the most difficult decision making.

If you are working in genetic counselling or considering a move into the field, this excellent interview will enable you to capture a day-in-the-life of an early genetic counsellor.

Prof Christine Patch interviews Prof Lauren Kerzin-Storrar, 19 November 2020, about their recollections of the origins of the genetic counselling profession in the United Kingdom, which they had an active hand in.

The WCS Engagement and Society team are pleased to offer a wide range of free resource available to students and educators in genetic counselling. Please visit the dedicated resource page to access a variety of films, research projects, and blog articles designed to explore the ethical, legal and social issues raised by genomics.