Scope of professional roles for genetic counsellors and clinical geneticists in the United Kingdom

This document is written on behalf of the two professional bodies in the United Kingdom that represent genetic counsellors (the Association of Genetic Nurses and Counsellors) and clinical geneticists (the Clinical Genetics Society) and aims to support multidisciplinary working of these professional groups highlighting within a quick-reference format, areas of shared practice and the distinctions between role profiles for a Consultant Clinical Geneticist, Principal/Consultant Genetic Counsellor and the new support role that we have termed ‘Genomic Associate’, see AGNC career structure [1]. This builds on published documents that articulate the scope of practice of the clinical genetics workforce [2] and specifically the genetic counsellor [3] and clinical geneticist [4] roles.

In the United Kingdom clinical geneticists are medically qualified Members/Fellows of the Royal College Physicians or equivalent, where Clinical Genetics is an affiliated medical specialty. Genomic or genetic counsellors are allied health professionals with Masters level accreditation from the Genetic Counsellor Registration Board included in the Academy for Healthcare Science register and clinical scientists (genomic counselling specialty) accredited by the Health and Care Professions Council.
We acknowledge there is currently variability in these roles between NHS trusts and exceptions where the scope of practice for one professional group exceeds what is provided below in Fig. 1.
In Fig. 1 the roles are deliberately forward looking, i.e. they acknowledge that there are some areas of practice that may have traditionally been performed by one professional group, can now be shared with or devolved to other groups. Broadly speaking, the clinical geneticist leads on diagnostics and therapeutics and the genetic counsellor leads on psychosocial issues and care of the extended family. Both groups have skills and training in clinical genetics and there is much cross over between roles. The genomic associate leads on administrative support for the clinic, the patient and the clinical activities of the clinical geneticist and genetic counsellor. The genomic associate is part of the genetic counsellor career structure and has a clinical role that is different to a secretary; it is a position that has already been discussed in relation to the Genomics Service Specification for the National Health Service in the United Kingdom.

Triaging referrals
Referrals are assessed and triaged

Advice and guidance letters for refused referrals
Letters written in response to referrals that require clinical advice, but do not meet Genomic Medicine Service referral guidelines Responsibility for responding to referrals that do not require any clinical advice nor clinical contact Access to the appointment Facilitating patient access, including establishing if patient wants to be seen, supporting minority populations to access services, supporting patients with disabilities/audio/visual impairment to access services, contacting patients to explain what clinical genetics services can offer, arranging interpreters Acting as a chaperone in clinic Arranging measurements for patients in clinic, e.g. taking patient's weight and height Preparation for appointment Transcribing a written pedigree into electronic software Gathering relevant medical records, pathology reports, death certificates, tumour blocks Organising and obtaining familial blood or saliva samples to help confirm diagnosis in proband Obtaining record of patient choice/consent (not having the full consent conversation, but recording that it has been taken) Collating appropriate patient leaflets, consent forms for the clinic as determined by senior staff Patient/family type seen General genetics (adult or paediatric) Cancer genetics (adult or paediatric)

Physical medical examination
Physical examination of a patient to make a clinical diagnosis and/or to support or stratify genetic testing Specific physical examination that might be considered routine with respect to particular conditions (e.g. head measurement for a Cowden's clinic)

Family history
Taking a family history

Counselling and support
Generic genetic counselling skills e.g. disclosure of diagnosis, breaking bad news etc. Supporting patients and families adjusting to a genetic diagnosis or coping without one Making appropriate onward referrals for further psychological support Identifying complex grief reactions and interpreting complex family dynamics Specific application of genetic counselling theory to person -centred care, e.g. application of reciprocal-engagement models and/or reflective practice models

Genomic variant interpretation
Interpreting gene variants to determine clinical decisions, as part of a multidisciplinary team Integrating the results of clinical presentation and investigation to determine whether a rare phenotype supports variant pathogenicity Interpreting whether an established clinical presentation supports variant pathogenicity Administration to track down relatives to provide evidence in support of variant interpretation Fig. 1 Scope of professional roles for clinical geneticist, genetic counsellor and genomic associate in the United Kingdom. The colour coding provides a guide to the professional group providing each aspect of service: green = routinely within the scope of practice, amber = within the scope of practice for some professionals, but not for the majority, red = outside of the scope of routine practice.

Management and Treatment
Reviewing and recommending peer-reviewed management guidelines. Writing, e.g. NICE guidance Organising appropriate disease screening and acting as patient advocate to arrange access to services Devising individual management guidelines for a rare disorder based on research evidence Prescribing pharmaceuticals or molecularly targeted therapies MDT coordination, collating agenda items, taking meeting minutes All administration required for clinic and follow up Ordering of clinic supplies, test kits, appropriate proformas, consent forms

Follow Up
Follow up care of the nuclear family (e.g. parents and children) Follow up care of the extended family (e.g. 2nd and 3rd degree relatives)