Welcome Trust Report on Education in Genetics for Health Professionals. (Dr Hilary Burton)

(Full report available from PHGU.)

Executive summary

1.       In October 2001, the Public Health Genetics Unit (PHGU) was commissioned by the Wellcome Trust to undertake the development of a strategy for the education of health professionals in genetics.  This work was a response to the widespread recognition that genetics would spread from specialist genetics centres into most other areas of health services and that the wider workforce of health professionals was ill prepared to undertake the new roles entailed.

2.       The project had two aims.  Firstly to review the present educational programmes in the light of prevailing NHS strategies, workforce, and professional development structures and to consider future possible methods for promoting genetic competencies.  Secondly, to work with identified stakeholders within the professions and outside to develop a strategy for education and training.

3.       The scope of the work was to cover non-genetic medical practitioners including public health practitioners, nurses, midwives and health visitors, pharmacists, dieticians and health service managers.  Undergraduate and postgraduate education would be included.  Although there would be some emphasis on the Department of Health and the NHS in England, relevant information would also be sought for the devolved health services in Scotland, Northern Ireland and Wales.

4.       This document is a report of the first phase of the work.

5.       The Report describes the main policy themes set out in the NHS Plan and the extent to which they are concerned with genetic aspects of health and health services.  The main priorities of patient access, quality standards and workforce development have meant that developments in genetics are not prominent in the plans of mainline NHS organisations.  The Cancer Plan is alone amongst the National Service Frameworks in mentioning the importance of genetics and in recommending that advice on genetic aspects of cancer needs to be available in primary care and cancer units as well as from the specialist services.

6.       In contrast, those documents and reports that have focussed entirely on genetics over the past decade or so have steadily commented on the importance that advances will have for health and health services.  There will be opportunities across the whole of medicine far outside the confines of specialist genetic services.  The need for education of a wide range of health professionals has been a constant theme.  However, until very recently there have been no major initiatives to develop this.

7.       Genetics does, however, feature as a major element of the NHS Research and Development strategy and the Science and Innovation Strategy.  These have led to major developments during 2002 with funding of six Genetic Knowledge Parks and two Reference Laboratories.  A Green Paper on Genetics is expected in 2002.

8.       Outside specialist genetic services, doctors and nurses most commonly provide genetic advice in the context of cancer and antenatal care.  Two antenatal genetic tests and one neonatal test are soon to become the subject of National Screening Programmes.  The development of high quality care in these areas is therefore of the most pressing importance.  However, there is evidence from many reports, including a national Confidential Enquiry, that the quality of genetic advice given by non-geneticists is variable and high standards not commonly achieved. 

9.       For pharmacists, education to become involved in pharmacogenetic testing is of most immediate concern.  For dieticians, the need to understand and be able to advise on the relationship between genetic factors, diet and disease is perhaps a little more distant.  Finally for public health physicians and health service managers there is the need to understand genetics as a major determinant of disease and seek ways of ensuring advances are translated into effective health services.  The evidence is that the large majority of these health professionals do not understand genetics well enough to be able to undertake these roles. 

10.   Education is needed at the levels of undergraduate, general professional training, specialist training and continuing professional development.  In broad terms across the professions, genetics as a basic science is taught to a greater or lesser extent in the undergraduate curriculum, though the actual amount of this, particularly in the nursing curriculum, is quite minimal. 

11.   Professional training is variable.  For doctors, skills such as constructing a family tree, and basic understanding of the ethical or social issues are thought to be important.  An initiative is in place to develop a set of basic learning objectives for medical undergraduates.  Once agreed these will need to be disseminated and implementation facilitated.  There is little or no mention of genetics in most nurse, pharmacist, dietician or health service manager training.  The input into the training even of midwives and health visitors is variable.

12.   At the postgraduate level, the genetic content needs to be tailored to the particular speciality, whether this is primary care, a hospital speciality, or, in nursing, a speciality such as midwifery or health visiting.  In the medical profession, an initiative is beginning to ascertain the various speciality requirements for physicians, to define a curriculum for each and to develop learning resources.  However, neither this initiative nor the undergraduate initiative mentioned above has received dedicated resources.

13.   Nurses, too have recognised their learning needs during the last few years and there is a move by the Royal College of Nursing to work towards developing an educational programme.  Proposals to develop an outline curriculum content have been made, but not funded.  For other professionals, there is not yet the groundswell of opinion that would support the need for genetic education.  Discussions about the need for education are still at an early stage amongst those with a special interest. 

14.   Developments in genetic education for non-specialist health professionals tend to have emanated from university departments with a special interest often founded in research in the educational area.  Formal courses in genetics, some with a special emphasis on cancer genetics have been identified at six higher education institutions and several further courses are at an advanced stage of development.  In addition most regional genetics departments run training and study days and undertake talks to various groups by invitation, but they are hampered by lack of resources and time.  Three institutions, Cambridge, Cardiff and Sheffield are particularly focussed on Public Health Genetics.  They provide placements for Specialist Registrars and run courses for public health specialists, health policy managers and others.

15.   The Knowledge Parks all have plans to take forward genetic education.  In addition, there are numerous electronic resources based on both sides of the Atlantic, which provide education and information on most aspects of genetics and aimed at health professionals and patients.  Whilst these are a major resource, their use may be limited by lack of knowledge about their existence, lack of access, doubts about the accuracy and individual relevance of their contents and possible inconsistencies with local services.  Some of these areas may be remedied by the development of a genetic section of the National Electronic Library for Health (NeLH) possibly linked to local regional genetic websites.

16.   The picture on the overall level of resources going into developing health professional expertise in genetics is one of individual enthusiasts committed to developing initiatives and frequently unsupported even by the freeing up of their personal time.  This lack of resource commitment is all the more surprising given the much higher levels of funding provided by the Medical Research Council, NHS Research and Development, the Wellcome Trust and other charities large and small for basic biological, molecular and clinical research.  Much of this is now based on genetics and most purports to lead to possible advances in prediction, prevention and treatment of disease.  The astonishing disparity begs the question how these advances will be communicated and promoted to the workforce who carry out the day-to-day interactions through which these advances will be realised.

17.   The Report gives consideration to some of the general requirements and challenges for the development of genetic education.  Some progress has been made both in the UK and the US in agreeing core competencies in genetics.  The educational challenge will be great, given the complexity and range of the science, clinical, ethical, legal and social issues in genetics and the knowledge and skills required.  A multiplicity of methods will be needed including the provision of support to learning through clinical interactions and more formal educational processes.  Some lessons might be learned from development in the United States, in particular the National Coalition for Health Professional Education in Genetics.

18.   The Report concludes that the development of a programme to promote genetic competency widely amongst health professionals is overdue.  It will present a difficult challenge because of the complexity and range of content, the differing needs of individuals, and the many competing priorities within the NHS.

19.   Much progress has been made by individuals and institutions including new courses, initiation of work to ascertain requirements for various specialisms and the development of electronic resources.  However, this has been hampered by lack of high-level commitment, lack of resources and lack of co-ordination.

20.   In the final section recommendations are made for the development of a strategy for genetic education of health professionals. 

21.   It proposes that a UK partnership for genetic education should be set up including Department of Health, interested research institutes and funding bodies, the private sector and a wide range of health professionals.  This partnership would provide overall leadership, apply pressure for commitment of resources and ensure that educational needs of the workforce were included as quality standards and as priorities for Workforce Development Confederations.

22.   The Report describes work on antenatal screening, familial cancers and the development of competencies in primary care, hospital and public health specialists as being of most immediate priority and outlines possible initiatives to promote education in these areas.  For undergraduates in all specialities, learning objectives should be derived and courses developed, with, where necessary, initial concentration on training the trainer.

23.   Finally the Report recommends further work to develop a more detailed strategy including the development of commissioning frameworks for:

·         Information resources

·         Requirements within a PCT

·         Professional training resources

·         Development of curricula for medical and surgical specialities

·         The development of undergraduate curricula for each profession