Genetics white paper heralds “a revolution in health care”BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7404.1413 (Published 26 June 2003) Cite this as: BMJ 2003;326:1413
A vision of a future NHS offering personalised health care that is based on a person's genetic profile was painted in the government's genetics white paper, announced this week.
The health secretary, John Reid, told the House of Commons: “Genetics promises a more personalised approach to health care, with interventions tailored to each person's own genetic profile.” He proclaimed, “We are standing on the threshold of a revolution in health care.”
An estimated six out of ten people will, by the age of 60, develop a disease that is at least partially genetically determined. The white paper lays out a future NHS where patients are routinely tested in GP surgeries or local pharmacies for predisposition to common diseases such as heart disease and diabetes. Treatment, lifestyle advice, and monitoring will then follow.
In addition, the Human Genetics Commission has been asked to consider the case for screening babies at birth and storing genetic information for future use.
The white paper outlines the potential for gene therapy, seeing a future where “gene therapy may become a cornerstone of modern medicine.” It predicts that the first licensed gene therapy medicine will come on stream in the next five to 10 years.
The white paper does acknowledge that the timing for scientific advances is uncertain but states that “unless we act now to ensure we have firm foundations to build on, the NHS will be left trailing.”
Over the next three years the government is investing £50m ($83m; €72m) in developing genetics services. Specialist genetics services will be strengthened to cope with the increased demand for genetic testing, including training 50 new genetic counsellors. Up to £18m will be spent on upgrading laboratory facilities. At the same time, genetic services will be incorporated into mainstream services.
A new NHS genetics education and development centre will be set up. One of its priorities will be to ensure that all GPs can get training in this specialism. Funding will be provided for 10 GPs to develop a special interest in genetics, and £2m will be allocated for genetic initiatives in primary care.
An investment of £4m will be made to fund pharmocogenetics research on existing medicine. Up to £3m will go to support gene therapy research on single gene disorders. Cystic fibrosis, the most common inheritable single gene disorder, was picked out for a grant of £2.5m, aimed at finding a gene therapy cure for the disease.
John Reid attempted to allay anxiety about the impact of genetic medicine by promising an open debate on the issues and by imposing safeguards. Legislation was announced making it an offence to test a person's DNA without their knowledge or consent, except where needed for emergency medical treatment and by the police and the courts.
The white paper acknowledges that individual genetic profiles may lead to discrimination in areas such as employment and insurance. The government is considering legislation to protect people against unfair discrimination. The current moratorium on the use of genetic test results by insurance companies continues until 2006.
But the government's safeguards are not sufficient for some people. Dr Helen Wallace of the pressure group GeneWatch UK said the government had put the interests of commercial companies ahead of the public. She said, “It has failed to say it will draft legislation to prevent employers and insurers from accessing genetic test results. And it has signalled that everyone will be tested for genetic disease, without conclusive evidence that it is useful.”
The chief executive of the Medical Research Council, Professor George Radda, welcomed the white paper, but warned: “There continues to be a pressing need for further research in areas such as gene therapy if these possibilities are to be realised.”
Helena Kennedy, chairwoman of the Human Genetics Commission (HGC), said, “The white paper clearly signals a major investment in genetics within the NHS and that the government has recognised the HGC's concerns that this investment might be squandered if people are worried about what use might be made of their sensitive genetic information.”
Our Inheritance, Our Future: Realising the Potential of Genetics in the NHS is at www.doh.gov.uk/genetics/whitepaper.htm