White Paper calls for NHS to offer revolutionary treatment while protecting against gene discrimination

All babies born in Britain could have their DNA stored in a national databank for their future medical treatment as part of a £50m genetics initiative published yesterday.

The Government will spend the money over the next three years on expanding medical genetics in the NHS while protecting people against the misuse of DNA testing.

As part of the initiative, the Government has asked its watchdog on DNA technology, the Human Genetics Commission, to consider the case for screening every baby at birth and storing their genetic profile for future use in tailoring health care according to their needs and their genes.

Extra money is being made available to extend gene therapy, a revolutionary treatment that promises to cure inherited conditions, and promote pharmacogenetics, the science of tailoring drugs to suit a person's specific genetic makeup.

At the same time, the genetics White Paper promises to outlaw the testing of someone's DNA without their consent and to prevent unfair discrimination based simply on genetic characteristics.

Tony Blair says in a foreword to the White Paper, Our Inheritance, Our Future: "The more we understand about the human genome, the greater will be the impact on our lives and on our health care.

"As an increasing number of diseases are linked to particular genes or gene sequences, we will be able to target and tailor treatment better to offset their impact and even to avoid the onset of ill-health many years in advance."

Much of the money - £18m - will go towards upgrading the NHS's genetics laboratories where DNA testing of patients takes place. Millions more is to be spent on expanding the number of genetics counsellors and laboratory technicians.

It has also promised to introduce legislation to make it an offence to test someone's DNA without their knowledge or consent, except as part of their medical treatment where consent is impossible to obtain, or as part of an investigation by the police or the courts.

The White Paper also states that the Government "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".

Tom Shakespeare, a DNA ethicist at the University of Newcastle, praised the proposals, but added: "The open question is whether either gene therapy or pharmacogenetics will ever fulfil the huge hopes and expectations of both researchers and scientists. Early hype proved premature - turning DNA research into genetic health benefits is much harder than anyone ever imagined."

Alistair Kent, director of the Genetics Interest Group, said £50m was a "drop in the ocean" but an important drop to help to provide the infrastructure needed by the NHS. Baroness Kennedy of The Shaws, chairwoman of the Human Genetics Commission, welcomed the White Paper because it addressed widely held fears over genetic discrimination.

Government's £50m genetics fund to develop bespoke drugs

The government's pledge of £50m over the next three years follows the £30m it announced in 2001 to develop specialised NHS genetics services.

DNA promises to revolutionise medicine in the coming decades, the White Paper says, now that it can be used to diagnose, treat and even prevent serious diseases.

"Genetics knowledge will permeate health care, bringing more accurate diagnosis, more personalised prediction of risk, new drugs and therapies, prevention and treatment better targeted to the disease, and tailored according to a person's individual genetic profile," it says.

Tailored drugs

Pharmacogenetics is likely to wield the greatest impact in the short-term, when the genetic variation between patients is used to assess the type of drugs and the way they are prescribed.

"As our understanding grows about how genes and drugs interact, patients could undergo a genetic test to predict their response and help ensure that the medicine and dose is right first time," the White Paper says.

"This should improve outcomes, reduce wastage and help avoid serious side-effects. New pharmaceutical products linked to a genetic test are likely to become available within the next five years."

Gene therapy

Rather than dealing with the symptoms, a gene-based approach to medicine can tackle the root causes of the disease or disorder. One example is gene therapy, where doctors attempt to correct a defective gene or cure disease by introducing genetically altered tissues or vaccines.

More than 600 clinical trials of gene therapy are under way around the world, involving nearly 3,000 patients. Some children suffering from supposedly fatal inherited diseases have been declared cured of their condition. The Government will spend £2.5m over five years to support gene therapy for cystic fibrosis, the most common single-gene disorder in the UK.

The White Paper says: "At the current rate of development we can expect to see the first licensed gene therapy medicines coming on stream within five to ten years."

Genetic screening

The Government is already funding, through the Medical Research Council, a research project where 500,000 people will be genetically screened to tease out the role of genes and the environment in the triggering of diseases. The UK Biobank project could be the forerunner of a national DNA databank where every newborn child's DNA is stored for the future use in pharmacogenetics. The White Paper says that the Human Genetics Commission has been asked to report on this screening proposal by the end of next year.

Public education

About £15m will be spent on developing six genetics knowledge parks. "They will be able to work in partnership with the private sector to develop new genetic medicines and treatments and an extended range of diagnostic and predictive genetic tests," the White Paper says. It adds: "We want to engage in a genuine dialogue on genetics issues. We recognise that developments in genetics will present new ethical and social challenges."

"We need to be alert to the potential adverse consequences and prepared to take action where necessary."

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