Building the Genetic Counsellor Profession in the United Kingdom: Two Decades of Growth and Development

Abstract

The United Kingdom (UK) is comprised of England, Scotland, Wales and Northern Ireland and the current population is approximately 62 million (Office for National Statistics 2012). Healthcare, including genetic services and appropriate testing, is provided to all citizens free at the point of service, via a National Health Service (NHS) funded through taxation (National Health Service Choices 2012). All UK citizens have a named general practitioner who is responsible for their overall healthcare. Individuals and families in every part of the UK have access to genetic services. These are staffed by multi-disciplinary teams comprising mainly medical geneticists and genetic counsellors; the regional NHS genetics laboratories are either integrated with or very closely aligned to the clinical centres. Within the regional genetics centres, a comprehensive service is provided that includes prenatal genetics, and general, metabolic and cancer genetics relating to both paediatric and adult care (Department of Health 2010). Specialist training exists for medical geneticists, genetic counsellors and laboratory geneticists. Many clients are referred to the genetic service by a primary care practitioner (doctor, nurse or midwife working in a primary care setting, such as a community clinic), although in some cases another specialist will refer. Medical genetics clinics were first established in 1946 (Harper et al. 2010), although there was huge expansion in the provision of genetic services during the 1980's, when testing using recombinant DNA became feasible in the clinical setting. With this expansion, a number of specialist nurses were employed to support the work of medical geneticists, obtaining the necessary knowledge and skills informally through observing colleagues. At the end of the 1980's, ten of these practitioners met at a scientific meeting and formed the Association of Genetic Nurses and Counsellors (initially called the Genetic Nurses and Social Workers Association). In 1992 an Education Working Group was formed by members of that association and two studies were undertaken to document the role and scope of practice of genetic nurses (Skirton et al. 1997). Building on that study, the first formal recommendations for the education required for genetic nurses or counsellors were made (Skirton et al. 1998). With the expanding scope of practice, largely due to the increasing availability of genetic testing, the need for post-graduate level education and training (in scientific, clinical and psychosocial aspects of genetics) for non-medical genetic practitioners became apparent (Skirton et al. 1997, 1998). In 1992 the first Master's level programme in Europe was established in the combined academic and clinic department of medical genetics in Manchester, UK; a 2 year Master's level Genetic Counselling course with the aim of providing a recognised vocational and academic training for genetic counsellors (Kerzin-Storrar et al. 2002; Begleiter 2002). A second UK programme, with the same aims and similar structure opened in Cardiff in 2000. The two programmes are based on a triad of taught modules, clinical placements and research project, and both have maintained a strong psychosocial emphasis alongside the necessary science. There are strong links between the programmes, which has resulted in some joint teaching and symposia that are particularly valued by the students. In addition, the programmes have international links through active membership of the Transnational Alliance for Genetic Counseling (TAGC) and collaborations with training programmes in other countries (Sahhar et al. 2005). In keeping with the overall philosophy of the profession in the UK (based on the belief that practitioners from a wide range of backgrounds can make a contribution to the profession), both programmes aim to attract a diverse cohort of students from the UK and other countries, including those with prior nurse training and other professional backgrounds as well as science graduates. The entry criteria are therefore broad in terms of previous academic qualifications. Entry is highly competitive and as the majority of graduates have gone on to work in UK NHS genetic centres, this has contributed towards building a talented and committed workforce. The establishment of the Master's programmes significantly influenced the shift from a more ad-hoc profession (e.g. use of the titles “genetic nurse” or “genetic associate”) to the single professional title of ‘genetic counsellor’, and the establishment of entry level qualifications and professional regulation through the Genetic Counsellor Registration Board (GCRB) in 2001, which is explained in the section below. In fact, the GCRB competencies were greatly informed by the MSc programmes’ learning objectives (Skirton et al. 2003). Coming full circle, the GCRB now accredits the MSc programmes (Genetic Counsellor Registration Board 2012). Following the graduation of the first students from the Master's degree course in genetic counselling, the Education Working Group of the AGNC predicted that an increasing number of practitioners would enter the profession via this route rather than as registered nurses or midwives and a national system for ensuring patient safety through assessment of practitioner competence was required. Importantly at this point, AGNC members voted to adopt the professional title ‘genetic counsellor’ for all practitioners undertaking the role, regardless of educational or professional background. The registration system enabled graduate nurses or midwives, as well as graduates of the Master's degree in genetic counselling to apply for registration following 2 years of full time supervised experience in a genetic centre (Skirton et al. 2003). The term registration was used to signify entry onto a national register of practitioners who have satisfied a set of agreed criteria and thus demonstrated professional competence. This term is used in the same way in the United Kingdom by other health professions, such as nurses, doctors and clinical scientists who are registered (rather than licensed or accredited). The assessment process was developed by the AGNC Education Working Group over a period of several years, with due consideration of models used in other countries and by other health professions. It could be argued that the 2 year required training period, together with the detailed portfolio assessment, is even more rigorous than in some other countries. This was felt to be important to ensure equivalent standards of competency between practitioners who come from diverse entry backgrounds. Following consultation with AGNC members and other relevant professional groups, the members of the AGNC voted in the year 2000 to introduce the system. The assessment system is managed by an elected Genetic Counsellor Registration Board and is portfolio based: applicants must provide a case log, three case studies, an essay, audio-tapes of two counselling sessions (with evidence of reflection), a record of continuing professional development (with practitioner reflection) and references from senior colleagues (Genetic Counsellor Registration Board 2012). Applicants must be mentored by a registered genetic counsellor, who also assesses clinical competency. The mentor must be able to comment on the applicant regarding 1) adequacy and currency of genetic knowledge base and expertise, 2) self-awareness, recognition of boundaries and ability to liaise appropriately with colleagues, 3) professional/academic activities, 4) use of counselling supervision and the GCRB Code of Conduct. Submitted written work is anonymised and assessed by a panel of expert genetic counsellors, taking into account the following criteria: evidence of awareness of appropriate genetic counsellor practice, ability to use a range of current references to underpin the material, ability to critically analyse research evidence and synthesise material from different sources, evidence of reflective professional practice and ability to write using a scholarly writing style. Thus far, 182 genetic counsellors have registered. There are 166 practitioners currently on the register (GCRB 2012), 55 % of the membership of the AGNC, with a further 64 reporting that they are actively working towards registration (according to a recent survey by the AGNC). The GCRB has also been very actively involved in discussions with registration bodies from other countries, to facilitate movement of genetic counsellors between nations, and reciprocity agreements have been set up between the UK and Australia, New Zealand, South Africa and Canada. Genetic counsellors registered in the US are eligible to apply for registration in the UK, but this arrangement is not reciprocal. Further information on the registration process is available at the GCRB website [http://www.gcrb.org.uk/]. In the mid-1990s, when the first MSc Genetic Counselling graduates joined clinical genetics teams, the matter of appropriate salary scales and career development opportunities soon became a challenge for the profession. Genetic counsellors came from a variety of academic and professional backgrounds. Usually, practitioners with a nursing background were on a nursing pay scale, whereas non-nurse genetic counsellors were placed on a clinical scientist (or occasionally administrative) pay scale. Understandably, such anomalies led to inequities and complications in career progression, while differing pay scale arrangements were not in line with the overall aim to promote and maintain a unified genetic counselling profession originating from multidisciplinary backgrounds. Early work by a small group of MSc graduate genetic counsellors led to the formation and implementation of a locally agreed unified career structure and pay scale for the genetic counsellors employed by one regional genetic service (Bussoli et al. 2001). This was to form the basis of the first career structure for genetic counsellors, developed by the Career Structure and Salaries Working Group of the AGNC, published in 2005 and updated in 2012 (Association for Genetic Nurses and Counsellors 2012). Almost simultaneously, a major overhaul of pay and conditions for all staff (other than medical doctors) employed in the NHS was implemented and cascaded throughout England (‘Agenda for Change’) (NHS Employers 2012), which formalised the principle that genetic counsellors from all backgrounds should be matched to the same pay and progression scales. Recently, the AGNC issued a revised and updated Career Structure document to assist the current work around formal regulation of the genetic counsellor profession in the UK. The genetic counsellor career structure has 4 levels. A trainee Genetic Counsellor is able to meet the entry-level criteria for GCRB registration, while a Genetic Counsellor has gained GRCB Registration and is able to practice autonomously, but is generally not responsible for mentoring or managing other staff. A Principal Genetic Counsellor is defined as having substantial experience and training and takes independent responsibility for a range of complex work with additional duties, usually including training and management. An ‘Expert level’ Genetic Counsellor may work either as a Consultant Genetic Counsellor (the highest level of clinical post available in the UK and one in which the practitioner is a reference point for other clinical staff regionally or nationally), with additional responsibilities or Genetic Counsellor Manager, who in addition to an expert clinical role would be responsible for the work of all genetic counsellors in that particular service. Statutory regulation aims to protect the public, setting standards and systems to ensure practitioners have the necessary knowledge, training, competency and conduct to practice safely. Within the UK, many healthcare professions are regulated by the government, including doctors, nurses, physiotherapists and dentists. In 2003, a Government White Paper (Department of Health 2003) named genetic counsellors as an emerging profession in the UK that may require statutory regulation. An AGNC working group prepared and submitted an application to the Health Professions Council (HPC), the regulatory body for allied healthcare professions. The application demonstrated that genetic counsellors require statutory regulation on the basis of risk to patients and the increasing nature of risk from statutorily unregulated MSc trained genetic counsellors. The profession was shown to meet the criteria set out by the HPC including recognition as an autonomous stand-alone profession, with defined education and training standards, evidence based practice and code of conduct. On-going professional development and systems for fitness to practise were also demonstrated. In December 2009, the Health Professions Council (2009) recommended statutory regulation and legal protection of the title “Genetic Counsellor” to the Secretary of State. After the national election in 2010, the UK coalition government have moved away from statutory regulation for further health professions in favour of a new system for quality assurance through voluntary registers. However, statutory regulation protects the title, making it a legal offence to use it if not registered. This aims to ensure that all those who use the title ‘Genetic counsellor’ are trained and registered as competent to provide appropriate and safe patient care, thereby offering more robust protection for patients. The profession continues its work towards regulation, either statutory or through quality assured registration, in order to maintain the professional standards of genetic counsellors in the UK. In 2003, a Government White Paper on genetics led to an investment in expansion of services in the UK NHS, including a commitment to increase the number of trained genetic counsellors (Department of Health 2003). While it was acknowledged in the White Paper that more genetic counsellors were needed to provide services at an appropriate level, and the Department of Health did fund new genetic counsellor positions, there was a dearth of trained and experienced counsellors available to fill new posts. There was no system in place to fund and administer training grade posts to provide entry-level genetic counsellors with the experience and support to attain the necessary competences required to register as genetic counsellors. A working group of the AGNC were successful in their proposal to the Department of Health (DH) for a centrally funded Training Scheme to be monitored by a profession-led Training Panel. Funding was granted for up to 50 training posts, including full salary costs, educational allowance for trainees, and a stipend to the host Centres. The scheme was set up so that individuals fulfilling GCRB entry level qualifications could complete a salaried 2 year training period in one of 17 approved training centres to prepare for GCRB registration. The scheme has proved highly successful (Barnes et al. 2012). Of 43 trainees appointed in the first two phases, 42 have gone on to substantive posts within NHS centres, and 36 have already gained GCRB registration. A further nine trainees have been appointed in the third and final phase of the DH funded scheme, where 50 % of salary costs have been funded locally. The Genetic Counsellor Training Panel are actively seeking a mechanism for continued central funding so that genetic counsellor training posts are embedded in the NHS to ensure a flow of trained, registered genetic counsellors into the profession. There are two main challenges for genetic counselling within the UK: 1) management of changes in genetic services in response to technological and medical developments and 2) ensuring formal recognition of the registration system. A vision of genomic health care is that genomic technology will be used across the whole of the NHS improving diagnosis and treatment and that all health care providers will be using it in their routine practice (Human Genome Strategy Group (HGSG) 2012). This could reduce the need for specialist genetic services but at the same time lead to an expansion of roles for genetic counsellors, beyond supporting families with history or risk of rare disease, to facilitating the effective dissemination of genetic technologies embedded in care pathways across the spectrum of health care. If, as stated by HGSG (2012), the individual becomes the gatekeeper of their personal genetic data, this has the potential to widen the focus from data related solely to health care to a much broader spectrum of genomic data related to susceptibility, response to therapeutics and even what has been called recreational genetics. Again, there may be new roles for genetic counsellors in helping individuals understand and make use of this information outside of traditional health services. These roles will require new and enhanced skills in evaluation of tests, deeper understanding of molecular genetics and the management and therapeutic options in both rare and complex disease. In the UK there is a move away from statutory regulation to quality assured voluntary registration (Department of Health 2011). Protection of the public and development of the profession will be underpinned by professional regulation. As genetic practice extends, standards of competence for practitioners become increasingly important to maximise benefits and minimise harm. The dramatic growth of the profession in the UK has been due to the increase in demand for genetic services as well as the pro-active approach of the professional association in raising standards, while a system of registration helps to ensure public safety. It is of note that the activities have only been possible because of the goodwill and enthusiasm of genetic counsellors from diverse backgrounds to develop the profession, and the encouragement and recognition from medical colleagues. In addition, the intention to maintain an inclusive approach to the profession has resulted in a cohesive group of practitioners who are able to demonstrate competence in genetic counselling, regardless of their original academic background. The UK is part of Europe and there are developments supported by the European Society of Human Genetics that will result in a European-wide registration system (Skirton et al. 2010). The experience of genetic counsellors in the UK has had an influence on the profession in Europe and enhancement of standards and practice in Europe will enrich the profession in and beyond the UK.