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CHAPTER 1: INTRODUCTION
The Minister for Health and Community Care announced on 17 June 2004 that he had commissioned a Review of Genetics in Relation to Healthcare in Scotland under the Chairmanship of Professor Sir Kenneth Calman. The membership of the Group is set out in Appendix 1.
This Review is set against a background of unprecedented change. Over the last few years there have been rapid and important developments in genetic science, and significant changes in the way healthcare is delivered as well as in the social environment in which it is delivered. Recent years have also seen rising awareness and interest in genetic issues, fuelled by increasing speculation about the potential application of genetic knowledge across all areas of healthcare after the completion of the human genome project. As a result, there have been significant developments within genetics at a UK level. The publication of a Genetics White paper in England 1 which was accompanied by considerable new investment in genetics, followed by Reviews of Genetic Services in both Wales 2 and Northern Ireland 3. It is against this background that this current Review of the position in Scotland, has been commissioned.
England
In England, the then Secretary of State for Health Mr Milburn, made a major speech on genetics on 19 April 2001. In his speech Mr Milburn not only announced that DH would publish a Green Paper on genetics in 2002, but that in addition, £30m of new funding would be made available to fund a number of major initiatives in the field in England, in order to modernise and strengthen the academic, research and NHS service infra-structure to ensure that the NHS was well placed to take best advantage of the rapid technological advances in genetics that were predicted to follow the success of the human genome project.
In line with these announcements, the Department of Health published a White Paper on Genetics 'Our Inheritance, Our Future - Realising the potential of genetics in the NHS1, in June 2003. The White Paper set out the UK Government's commitment to developing genetics knowledge, skills and provision within the NHS by investing more than £50m over the following 3 years. In addition to outlining the service developments that would be taken forward to meet the commitments given by the Secretary of State, the White Paper also looked at the likely wider application of genetics across healthcare, as well as social and ethical issues, the facilitation of genetic research and the enhancement of professional education and training that would be needed to underpin the application of these developments in genetics across the NHS. A summary of the White Paper commitments can be found in Appendix 2. The full text of the White Paper can be found at http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGuidance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4006538&chk=enskFb
Wales
A strategic review of genetics and health in Wales was commissioned by the Specialised Health Services Commission for Wales ( SHSCW) and the Welsh Assembly Government and a document 'Genetics and Health in Wales - A Strategic Review' was published in November 2002. The review considered issues related to clinical genetic services and the use of clinical and laboratory approaches to help patients and families with inherited disease. It also examined the likely broad implications of genetics for medicine as a whole.
In March 2003 Welsh Ministers announced £1.5m additional funding for investment in genetics in Wales. The sum would be recurring. Following this, an advisory group was set up with a wide range of interests represented, which advised the Commissioner of Genetic Services in Wales on the allocation of these funds, and work is in progress to implement the developments agreed.
Northern Ireland
A review of clinical genetic services in Northern Ireland was published in October 2003. The Report can be found at www.dhsspsni.gov.uk .
The review specifically addressed the regional clinical genetic service and how it needed to develop over the coming years to meet the anticipated needs of the population in Northern Ireland. A number of specific areas were addressed including:
- The provision of services, e.g. clinical, cancer and laboratory genetic services.
- The relationships with other specialties and primary care.
- The implications of screening programmes for genetic services.
- Workforce requirements.
The aim of the review was to make recommendations on the future shape and scope of genetic services over the next 5 to 10 years in the context of developments in Great Britain and Northern Ireland.
Following completion of the review and consultation an action plan was disseminated in early January 2005. The main emphases were on: strengthening staffing through increased medical and genetic associate posts, reducing out-patient waiting times, and improving information for patients and families. Genetic laboratories were included in a fundamental review of pathology services.
Scotland
Although legislative competence for human genetics is reserved to the Westminster Parliament, responsibility for healthcare delivery in Scotland is devolved to the Scottish Parliament. Thus, genetic services within the NHS in Scotland fall within the remit of the Scottish Executive and Scottish Health Ministers.
In Scotland, we currently have a position which compares very favourably with that elsewhere in the UK. We have a genetic laboratory service which many regions within the UK aspire to achieve, the organisation of which has provided the model on which the developments of the English service are being taken forward. Similarly our clinical genetic services are well established. On the other hand, there are identified gaps on the clinical side between the current staffing levels and those that are recommended for the specialty. Although currently relatively well equipped and up-to-date, there is no doubt that our laboratories will begin to lose their current advantages over time, unless investment continues to be made. With the expansions and opportunities now emerging in England, both clinical trainees and Scottish scientists might be recruited to the South. We already lose 75% of our molecular genetic laboratory trainees.
In recognition of this, the terms of reference for this Review in Scotland, place a major emphasis on reviewing the current status of NHS genetic services in Scotland, to assess what will be required to match the service developments in England and to prevent Scotland losing its advantage and falling behind. The terms of reference also recognise the importance of addressing the other areas covered in the English White Paper. The research base is strong, and the life sciences industry well represented, but it will be important to ensure that the right links are in place to facilitate genetic research and the development of the life sciences industry in Scotland and maximise the potential for technology transfer and the wider application of genetic knowledge and developments across the healthcare sector for the benefit of Scottish patients. An overview and outline of the current position of the NHS genetic services in Scotland is given in Chapter 5.
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