The role of genetic counsellors in genomic healthcare in the United Kingdom: a statement by the Association of Genetic Nurses and Counsellors

Abstract

In the United Kingdom, genetic counsellors work together with clinical geneticists and clinical scientist colleagues within specialist genetics services, but they also often work in multidisciplinary teams (MDTs) outside of such services. There, they contribute genetic knowledge together with expert understanding of how to communicate genetic information effectively. They can offer education and support to the MDT, while providing management advice for both affected patients and the extended at-risk family members. As genomic technologies are implemented across many disciplines within healthcare, genetic counsellors are playing a key role in enabling non-genetic health professionals learn, understand and integrate genomic data into their practice. They are also involved in curriculum development, workforce planning, research, regulation and policy creation – all with the aim of ensuring a robust evidence base from which to practise, together with clear guidelines on what constitutes competence and good practice. The Association of Genetic Nurses and Counsellors (AGNC) in The United Kingdom (UK) and Republic of Ireland is committed to supporting genetic counsellors, across all sectors of healthcare and research, as they help deliver genomic medicine for the patient, family and world-class health services.

Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners

“…Genetic testing within a multi‐disciplinary context is an approach recently employed in Australia (Mallett, Fowles, McGaughran, Healy, & Patel, ; Pokharel, Hacker, & Andrews, ). The growing importance of GCs within MDT was acknowledged in this study and is consistent with recent European and Australian studies (Barlow‐Stewart et al, ; Benjamin et al, ; Cordier, Lambert, Voelckel, Hosterey‐Ugander, & Skirton, ; Middleton et al, ; Skirton, Cordier, Ingvoldstad, Taris, & Benjamin, ). Pestoff, Ingvoldstad, and Skirton ()'s exploration of the time investment and “value‐adding” by GCs, identified four key factors unique to GC service: case management, holistic care, accessibility, and continued support.…”

“…While professional “registration” for GCs is not currently possible in Australia, the Australasian Society of Genetic Counsellors is currently preparing an application for genetic counseling to become a self‐regulated profession in Australia (Australasian Society of Genetic Counsellors, ). Regulation of GC practice is important as more roles will involve GCs to be based in MDT as the genetics expert (Middleton et al, ; Patch & Middleton, ). Importantly, professional registration and GC certification in both the UK and USA have lead to more autonomous practice opportunities and recognition of GC ability (Baty, ) and ensures quality and safe practice (Professional Standards Authority, ).…”

“…Despite this, genetic counseling is not a registered profession in many countries, including Sweden (Pestoff et al, 2016) and Canada (Shugar et al, 2017). Shugar et al (2017) Regulation of GC practice is important as more roles will involve GCs to be based in MDT as the genetics expert (Middleton et al, 2017;Patch & Middleton, 2018). Importantly, professional registration and GC certification in both the UK and USA have lead to more autonomous practice opportunities and recognition of GC ability (Baty, 2018) and ensures quality and safe practice (Professional Standards Authority, 2016).…”

UK families with children with rare chromosome disorders: Changing experiences of diagnosis and counselling (2003‐2013)

“…The existence of a long‐established Rare Chromosome Disorder Support Group also differentiates the United Kingdom from other countries. As the rates of RCD diagnoses rise significantly, thanks to wider use of microarray analyses and the anticipated introduction of next‐generation DNA sequencing into routine clinical practice, combined with the fact that RCD cases are inevitable geographically widespread, the role of non‐geneticist clinicians will inevitably continue at various stages of the patient journey, reinforcing the need for common guidelines, multidisciplinary teamwork, audit checklists, training and coordinated care pathways …”

“…21 Meanwhile, international evidence has emerged of large variations in clinical genetics practice, leading to an increased interest in defining the quality of services and improving delivery models. [30][31][32] Core competences and a code of practice have been produced for European health professionals, 20 [36][37][38] We recognise that the genetic and genomic testing and service landscape in the United Kingdom is also developing at a tremendous pace, not least because of the 100 000 Genomes project, 39 the creation of 13 Genomic Medicine Centres across the United Kingdom, 40 the Genomics England Clinical Interpretation Partnerships (GeCIP), designed to improve the accuracy and reliability of information fed back to patients 39 ; and a drive by Health Education England to educate non-genetics healthcare and other professionals in genomic medicine. 41 It is therefore imperative that the value of the expertise of UK families affected by RCDs is not lost in the rapid pace of developments in genomics per se for identifying current and future needs.…”