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CHAPTER 2: SCOPE AND TERMS OF REFERENCE FOR THE REVIEW
The terms of reference for the Review Group are as follows:
"To review NHS genetic services in Scotland in the light of the White Paper 'Our Inheritance, Our Future - Realising the potential of genetics in the NHS' and to assess how the current quality of such services in Scotland can be maintained and the potential from present developments in genetics harnessed for the benefit of academia, the life sciences industry and the NHS in Scotland"
In discussion the Group felt that this remit should be expanded to take account of the benefits to society that could accrue from developments. It therefore adopted the following amended Terms of Reference, in order to inform its deliberations:
"To review NHS genetic services in Scotland in the light of the White Paper 'Our Inheritance, Our Future - Realising the potential of genetics in the NHS' and to assess how the current quality of such services in Scotland can be maintained and the potential from present developments in genetics harnessed for the enhanced wellbeing of the people of Scotland, and to benefit academia, the life sciences industry and the NHS in Scotland"
Developments in human genetics will come to play a part across the field of healthcare. Many anticipate that advances in genetics will have a profound impact on healthcare and radically alter our approach to disease prevention, diagnosis and treatment as this new knowledge permeates clinical specialties. New ways of predicting and preventing ill health will be developed, as will better and more effective use of existing drugs. In addition, the development of new gene based drugs and therapies could bring novel and tailored approaches to therapy. The Department of Health published their White Paper in recognition of the need for a genetics and health strategy to ensure that health policy and services kept pace with the opportunities and developments that will arise from this expansion in knowledge, and ensure that the NHS is prepared to enable it to make maximum use of these developments as they occur.
The healthcare sector in Scotland will face the same challenges. As the remit implies, the purpose of this Review, therefore, is to consider the current position in Scotland and assess what developments and resources will be required to enable services in Scotland to be in a position to harness developments in genetics to maximum advantage and thus realise the benefits for health in Scotland. The objective is to utilise the deliberations of the Review Group to produce a strategy for genetics and health for Scotland. Accordingly the Group were asked to consider a number of related issues to enable the development of a comprehensive and meaningful strategy. These included:
1. NHS Genetic Services
- Clinical Genetic Services
- Laboratory Genetic Services
- Genetic Screening Services (Pregnancy and Newborn Screening Programmes)
To assess the capacity of our current NHS genetic services to respond to the increasing demands for counselling and genetic testing that will arise as more and more specific disease-causing genes are identified and more is learned about the genetic features of common diseases such as heart disease and diabetes.
In discharge of this brief, the Group considered it useful to carry out a review of existing specialised NHS genetic services across Scotland as a preliminary step. This enabled the Group to assess whether current capacity was adequate to meet present demands and to address emerging challenges, or whether strengthening was required to boost the ability of the service to meet the anticipated increase in demand.
2. The use of molecular genetic technology in pathology and related laboratory services in NHS Scotland
DNA based tests are being increasingly used across the pathology disciplines in the NHS. Ad hoc development of such services could lead to wasteful duplication, since many of these tests will only be required in small numbers. The Group were, therefore, asked to explore ways of coordinating the development of such services (perhaps alongside the specialised genetic services) so that effort can be concentrated in relatively few centres, and expensive facilities shared, in a cost effective and efficient way.
3. The use of genetics in diagnosis and management across other clinical specialties
The Group considered that it was important to ensure that the environment was right to enable the most effective and efficient use of advances in genetics in other specialties such as oncology, diabetes and cardiology, as genetic knowledge increases.
4. The role and involvement of Primary Care
It is widely recognised that Primary Care will come to play an increasing role, in addition to acting as 'gate-keepers' to protect the specialised clinical services. Accordingly the Group considered it important to look at what needed to be done to enhance their role, and to provide the support Primary Care services in Scotland will need in relation to their expanding role in genetics.
5. Education and training in genetics for all healthcare professions
The Group recognised that there would be a need to spread genetics knowledge across the NHS and the other healthcare providers to support the appropriate and effective application of developments in genetics for patient benefit. They, therefore, considered it important for the Review to look at what is currently happening and what would need to be done to enhance the genetic component in professional education across the healthcare sector.
6. Research in genetics
Along with these issues, a key factor the Group was asked to address was to ensure that the climate is right for the promotion and facilitation of genetic research within the academic community in Scotland. Not only to increase understanding of the basis of the common adult diseases which are a major cause of ill health in Scotland, but also to enable appropriate translational research, the development of new interventions and their implementation and evaluation.
Thus the Review needed to consider if anything should be done to improve the environment in which genetics research is conducted in Scotland to enhance its potential.
7. The life sciences industry
Many consider that the greatest impact of new genetics knowledge on healthcare in the shorter term is likely to come from developments in pharmacogenetics. The Group accordingly were, therefore, asked to consider how best to create an environment conducive to maximising the potential of the already well established research base in this field in Scotland, as well as ensuring that appropriate links and liaison with the life sciences industry are in place, to facilitate timely technology transfer.
8. Public education and awareness
Enhancing public awareness and knowledge about genetics is an important area. Not only will this play a key role in aiding public understanding and acceptance of new developments, but it will also be important for the success of genetic research projects which will depend on the altruism of individuals who are invited to participate. The Group were asked to give careful consideration to this vital aspect of the Review.
It is in recognition of the need to address all these important areas that the terms of reference for the Review are broadly based so that the outcome of the Review can allow the development of a strategy which would assist in maintaining and strengthening NHS services and ensuring that the potential opportunities for genetic research and the development of the life sciences industry in Scotland are maximised.
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