(2003), "UK. Genetics White Paper", International Journal of Health Care Quality Assurance, Vol. 16 No. 6. https://doi.org/10.1108/ijhcqa.2003.06216fab.002Download as .RIS
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UK. Genetics White Paper
Genetics White Paper
Keywords: Government, Genetics research, DNA testing, Gene therapy
In June a white paper, Our Inheritance, Our Future – Realising the Potential of Genetics in the NHS was published. It sets out the Government's commitment to developing genetics knowledge, skills and provision within the NHS by investing more than £50 million over the next three years. John Reid, Secretary of State for Health, said: "Genetics offers enormous potential to improve our health and healthcare. Increasing understanding of genetics will bring more accurate diagnosis, more personalised prediction of risk and more targeted and effective use of existing drugs. It will give us new gene based drugs and therapies as well as prevention and treatment regimes tailored according to a person's individual genetic profile.
"Our vision is for the NHS to lead the world in taking maximum advantage of the safe, effective and ethical application of the new genetic knowledge and technologies for all patients as soon as they become available. At the same time this Government will make sure there are safeguards and controls in place to guard against inappropriate use of developments in genetics."
The strategy includes several initiatives:
upgrading genetics laboratories to prepare them for the expansion in genetic testing;
new initiatives to introduce genetics based healthcare into primary care;
support for gene therapy research on single gene disorders including cystic fibrosis, the most common single gene disorder in the UK;
investment in gene therapy manufacturing facilities; and
pharmacogenetics research on commonly used drugs, and a new university chair and department in pharmacogenetics will be set up.
There are also plans to create new legislation which will make it an offence to test someone's DNA without their consent (except as part of their medical treatment where consent is impossible to obtain, or in the lawful use by police and courts) and to review the evidence for unfair discrimination against people on the grounds of their genetic characteristics and the appropriate means of addressing these concerns.
Professor Dian Donnai, Director of the Regional Genetic Service in Manchester and Executive Director of the North West Genetic Knowledge Park said: "This White Paper is excellent news for NHS patients. Genetic services in the UK are already amongst the best in the world but advances in genetics will soon impact on all branches of medicine. These investments will ensure the NHS is ready for these changes."
Professor Norman Nevin, Chair of the Gene Therapy Advisory Committee, commented that the time is right for strategic public funding of gene therapy research and that he welcomed the commitments which the Government had made in the White Paper. He said: "Gene therapy has unparalleled potential to develop treatments for patients not only with inherited disorders such as cystic fibrosis but also those with more common conditions such as heart disease and cancer. These funds will serve to bridge the gap between the laboratory and the clinic for pioneering and innovative studies under development here in the UK."
Further information: The white paper, Our Inheritance, Our Future – Realising the potential of genetics in the NHS is available on the Department of Health Web site at: www.doh.gov.uk/genetics/whitepaper.htm