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APPENDIX 2: SUMMARY OF THE COMMITMENTS MADE IN THE ENGLISH WHITE PAPER
1. Strengthening specialised services
Increasing the capacity of laboratory and clinical genetics services by:
- Increased investment in expanding the specialist genetic workforce
- new funded clinical training posts to train over 50 new genetic counsellors
- up to £3.5 million to fund up to 90 new Grade A trainees in laboratory genetics and the equivalent of 10 full time trainer posts.
- Investment of up to £18 million capital to upgrade NHS genetics laboratory facilities in England with the aim of leading to significantly cutting genetic testing times by 2006.
- Investment of up to £1 million in IT for genetics laboratories in the Genetics Testing Network, to enable better handling of work and communications within and between participating laboratories.
2. Initiatives to build genetics into mainstream services.
Incorporating genetic advances into everyday clinical practice by supporting new initiatives.
- Co-fund with Macmillan Cancer Relief pilots in six cancer network areas of a model of service delivery for people at risk of familial cancer
- Pilot programmes to identify and treat people with familial hypercholesterolemia
- Provide up to £2 million of start-up funding over three years for a series of initiatives to bring the benefits of genetics into mainstream clinical areas
- Provide up to £2 million of start-up funding over three years specifically for primary care genetics initiatives
- Provide start-up funding to allow up to 10 GPs with a special interest in genetics to be established over the next three years
- Ensure that by 2004/5 all pregnant women are offered antenatal screening for Down's syndrome and appropriate counselling to enable them to make informed choices
- Ask the Human Genetics Commission to work with the National Screening Committee to consider the case for screening babies at birth and storing information about their genetic profile for future use in tailoring healthcare according to their needs and their genetic make-up.
3. Spreading knowledge across the NHS
Enabling healthcare professionals to be confident and effective in dealing with inherited disease and using new genetics based technologies and treatments.
The Government will support the integration of genetics throughout the NHS by:
- Setting up an NHS Genetics Education and Development Centre to act as a catalyst in bringing education and training in genetics for all healthcare staff
- Setting up a Genetics Visiting Fellowships Fund to allow NHS clinicians and scientists to travel abroad to acquire new genetics knowledge and expertise
- Develop a genetics portal on the National Electronic Library for Health and fund the production of specially written material for this website to ensure access to up- to-date genetic information for all healthcare staff
- Ensure that NHS Direct keeps abreast of developments in genetics so that the patients and the public will always be able to access up-to-the-minute information
- To support evidence based care, the National Horizon Scanning Centre will be including genetics in its regular programme of work and health technology assessments will be undertaken by both the National Genetics Reference Laboratories and the National Health Technology Assessment Programme.
- Invest in training for commissioners of genetic services by resourcing the Public Health Genetics Unit and the Genetic Testing Network to provide a rolling programme of training to meet the needs of commissioners.
4. Generating new knowledge and applications
Translating genetics research and development into improved health and healthcare.
The Government will sponsor new research initiatives to help convert genetic discoveries into improved patient care by:
- Investing up to £4 million to fund pharmacogenetic research on existing medicines
- Provide funding to set up the first university Chair in pharmacogenetics
- Provide up to £500,000 to support piloting of near patient genetic testing in the NHS, when the technology becomes available
- Invest up to £1.5 million to fund a range of research projects in the area of genetics based health services
- Invest up to £3 million to support gene therapy research on single gene disorders
- In addition provide £2.5 million over 5 years to support gene therapy research for cystic fibrosis
- Invest up to £4 million to provide greater access to facilities for gene therapy vector production for NHS and public sector researchers.
5. Ensuring public confidence
Promoting public understanding of genetics, a robust regulatory framework responsive to public concerns and transparency in genetic policy making. In this regard the Government has already:
- Developed a robust and proportionate regulatory framework around genetics and health and introduced a number of key safeguards such as the moratorium on unacceptable use of genetic tests by insurers and the banning of human reproductive cloning
- Established the independent Human Genetics Commission to provide expert advice on developments in human genetics and the social and ethical issues raised
The Government will also:
- Ensure that the regulatory framework anticipates and continues to address the public concerns
- Will continue to promote public understanding of genetics through funding appropriate public awareness initiatives and further supporting the Progress Educational Trust
- Will introduce legislation making it an offence to test a person's DNA without their knowledge or consent
- Will consider the evidence for unfair discrimination against people on the basis of their genetic characteristics and the appropriate means of addressing any concerns in this area.
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