Voices of Genetic Counsellors: So much more than just a test

The vital role of the Genetic Counsellor in their own words – Voices of Genetic Counsellors Video Series

Voices of Genetic Counsellors: So much more than just a test

The vital role of the Genetic Counsellor in their own words – Voices of Genetic Counsellors Video Series

A collaborative project between Wellcome Genome Campus Society and Ethics Research and the Association of Genetic Nurses and Counsellors.

The role of the Genetic Counsellor has never been more important since the UK Health Minister’s announcement that the “NHS must lead the world in genomic healthcare”, as well as the growing prevalence of genomic technology being introduced within the NHS.

The fact that genomics is fast becoming pivotal to NHS clinical practice is startlingly evident with the emergence of a national genomic infrastructure from NHS England, and the imminent launch of its NHS Genomic Medicine Service to facilitate it.

What impact does this have on the healthcare profession?

As genomics makes the rapid shift from specialist genetics into the mainstream of the NHS, healthcare professionals will be expected to cope with the potential ethical, psychological and social implications generated by the increasing amounts of genomic data delivered across the health service.

One of the most experienced professions at dealing with the interpretation of clinical genomics, and the uncertainties that exist around inherited disease risks, Genetic Counsellors have a vitally important role in integrating and evolving genomics into clinical healthcare practice. But there is still a lack of understanding among policymakers about the significance of the Genetic Counsellor to the delivery of genomic medicine.

The Genetics Clinic – by Chrystal Ding, Documentary photographer/writer

This is very apparent in the lack of training and education resources available to support the systematic incorporation of genetic counselling skills into clinical practice.

Evidently, more needs to be done to ensure that the new policy is successful in mainstreaming genomics into the NHS, and facilitating widespread access to genetic testing and personalised medicine solutions. Policymakers must ensure that the NHS has the workforce with the required skill set needed to cope with the increased demands of analysing, interpreting and translating complex clinical data, as well as being able to communicate and support patients and families throughout the process.

NHS staff from all professions must be able to develop the knowledge, skills and experience to enable the extraordinary potential of genomics to bring lasting benefits to patients.

Communication with patients and their families will be fundamental to achieving this great potential, and Genetic Counsellors are the professionals who possess the particular skills needed to convey difficult information and enable mainstream health services to cope with the challenging psychological situations that are often encountered after testing.

Pedigree Diagram: Helping families make sense of technical information – by Chrystal Ding, Documentary photographer/writer

What should the next steps be?

There is an urgent need for policymakers to develop the training and development infrastructure to support the ambitions of the Genomic Medicine Service. This means providing resources and opportunities to mainstream genomics in areas of education, practice, policy, research and leadership,. The NHS needs to prepare for a significant change in clinical practice that brings genomics into day-to-day healthcare, whilst being able to effectively deal with what that means for patients, and the healthcare professionals expected to support them.

What resources are currently available for healthcare professionals to learn more?

If you are a practicing policymaker, healthcare professional, or healthcare educator interested in the impact Genetic Counselling can have on the integration of genomics into a clinical setting, then you may be interested in a series of videos created by members of Wellcome Genome Campus Society and Ethics Research for the Association of Genetic Nurses and Counsellors.

The ‘Voices of Genetic Counsellors’ film series was developed to explore and convey the work of Genetic Counsellors, highlighting the skills necessary to empower people to make decisions about genetic information that are right for them. The films themselves are a powerful tool for the healthcare profession to draw knowledge about the role and impact of genetic counselling, and the value of research in order to evolve practice.

The Counselling Room – by Chrystal Ding, Documentary photographer/writer

In addition, the series explores the very poignant stories that exist behind genetic testing and the significant impact that they have had on the Genetic Counsellors themselves.

For more information visit our Genetic Counsellors resources page.