Hilary Burton, MA, BM, BCh, MFPHM; Ann Shuttleworth, BA; Alison Metcalfe, PhD, BSc, RGN.
Hilary-Consultant in Public Health Medicine and trainer and supervisor of specialist registrars in public health medicine, Public Health Genetics Unit, Cambridge; Ann-Freelance Health Journalist; Alison-Research Fellow, School of Health Sciences, University of BirminghamSignificant advances in genetic science have taken place in recent years, including the publication by the Human Genome Project of the finished sequence of the human genome. These advances have major implications for health-care provision, as they make it possible to develop new interventions to detect, prevent, treat and manage conditions with a genetic component.
In October 2001, the Public Health Genetics Unit (PHGU), part of the Cambridge Genetics Knowledge Park, was commissioned by The Wellcome Trust, an independent biomedical research charity, to develop a strategy for the education of health professionals in genetics.
The main sources for the needs assessment were published policy documents and literature reviews, other published and unpublished reports, personal contact, and material published on university and other websites augmented by email correspondence where possible. A detailed telephone survey was also undertaken on the provision of postgraduate genetic training and education for nurses (Metcalfe, 2002).
Single-gene disordersNurses already need knowledge and skills in genetics in a number of clinical areas. Within the sphere of single-gene disorders there are inherited diseases in a wide range of clinical specialties (Table 1). Nurses in these specialties need to know about these disorders and how to identify patients who may be affected. They need to be able to discuss the implications and possibilities with them, and refer to specialist services where appropriate. People living with these conditions, and the families of newly diagnosed babies and young children, are also likely to present to primary care nurses and health visitors, who will be involved in delivering ongoing care and helping patients to manage their conditions.
Primary careThe primary care team acts as a gatekeeper, referring to specialist services where necessary. The extent to which services are provided in primary care depends at least partly on the willingness and ability of individual organisations to do so. There is already support for GP practices taking on activities such as screening for common recessive conditions, antenatal screening and genetic counselling for those with a family history of cancer (Emery et al, 1999). There is an important role, for example, in providing general advice to concerned patients with a family history of cancer, where this is not at a high enough level for genetic testing to be useful or appropriate. However, mounting GP workloads and pressure from other priorities such as The NHS Plan (DoH, 2000) and National Service Framework targets make it likely that practice nurses will have the opportunity to take on new roles in this area. A number of tasks have been identified, based on research into breast cancer care (Hoskins et al, 1995), that can be carried out in primary care:
Box 2 discusses how genetic issues affect nurses, midwives and health visitors in day-to-day practice.
The second phase of the project, to formulate a UK-wide strategy to develop understanding and competence in genetics across a range of health professions, began in September 2002. A draft document for consultation is due to be published later this year. A key feature of the process was a series of stakeholder workshops for target professionals, including doctors, nurses, midwives and health visitors, dietitians, pharmacists and health service managers. Educational expertise was provided by the Open University Centre for Medical Education and the perspective of the general public was provided in consultation with the Genetic Interest Group, an umbrella group of organisations concerned with genetic disease.
As practitioners at the forefront of existing genetics services, nurses, midwives and health visitors are key groups in this strategy process, and will need to be actively involved in the development of appropriate genetic education. Whatever the outcome, a major programme is likely to be needed to raise awareness about the importance of genetics in health across the full range of professional groups, and adequate resources will need to be available to develop appropriate educational programmes.
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Burton, H. (2002) Education in Genetics for Health Professionals: Report to the Wellcome Trust. Cambridge: Public Health Genetics Unit.
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Harris, R., Lane, B., Harris, H. et al. (1999) National Confidential Enquiry into counselling for genetic disorders by non-geneticists: general recommendations and specific standards for improving care. British Journal of Obstetrics and Gynaecology 106: 7, 658-663.
Hoskins, K.F., Stopfer, J.E., Calzone, K.A. (1995) Assessment and counselling for women with a familial history of breast cancer. Journal of the American Medical Association 273: 7, 577-585.
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Metcalfe, A.M. (2002) A Survey of Higher Education Institutions' Provision of Education on Genetics for Post-registration and Postgraduate Nurses, Midwives and Health Visitors in England, Wales, Scotland and Northern Ireland. Birmingham: University of Birmingham.
Milburn, A. (2001) Speech by Rt Hon Alan Milburn, the Secretary of State for Health at the International Centre for Life, Newcastle-upon-Tyne. Available at: www.doh.gov.uk/speeches/apr2001milburngenetics.htm Accessed July 2003.