UK considers national gene database

February 11, 2000

Government, scientists and industrialists are discussing the creation of a national genetic database for the United Kingdom.

Experts, including George Poste, who last month retired as chief science and technology officer at SmithKline Beecham, want to see the National Health Service's vast pool of patient data expanded to include DNA samples and made available to researchers.

Their enthusiasm will be fuelled by the recommendations made by a panel set up by the Medical Research Council and the Wellcome Trust, which is expected to call for two genetic surveys on an unprecedented scale involving at least 500,000 UK citizens.

Following the completion of the Human Genome Project, a national database would let scientists explore how variations in a population's genetics could make some people more susceptible to medical conditions such as heart disease, cancer and diabetes. It would also show how genes interact with environment by picking up the influence of geographical location or diet, for example.

This would allow the NHS to target resources better and improve public health information, and give scientists new insights into how diseases are influenced by genetics.

The Department of Health has looked at the possibility and is monitoring the situation in Iceland, where the first national clinical database is being set up.

A DoH memorandum, published by the House of Lords select committee on science and technology last week, said: "A universal NHS health information and DNA database could be created. In the short term, there are questions about feasibility and affordability. There are also ethical and legal questions to be addressed."

Dr Poste, in his submission to the same committee, said: "The NHS is an under-utilised research resource in population genetics, which could yield large benefits for public health and industrial research."

He advocated a public-private joint venture, echoing the Icelandic example where a private company, deCode Genetics, is setting up the database in cooperation with government.

Dr Poste said private investment could provide the technology needed to screen the genetic code of NHS patients. In return, medical companies could use the data to help refine the use of drugs and treatments.

Veronica van Heyningen, head of cell genetics at the MRC Human Genetics Unit in Edinburgh, said the scientific, ethical and legal issues raised by a possible national database were likely to be discussed at the first meeting of the Human Genetics Commission, which took place yesterday.

"I think we could gain a great deal of information for biology with repercussions for medicine and quality of life if we collected genetic data on a population level," she said.

Two large-scale studies will probably be recommended by MRC and the Wellcome Trust, drawing on Pounds 25 million of joint funding.

Tom Meade, director of the MRC Epidemiology and Medical Care Unit and chairman of the panel, said it was likely to back a major project that would take genetic samples from 500,000 UK residents between 40 and 70 years old to look at conditions such as heart disease and cancer.

Another study could focus on newborn babies, allowing scientists to study how an individual's genes might influence health later in life. In both cases, explicit consent of patient or parent would be sought.

In Iceland, controversy over possible misuse of the information and concerns surrounding the involvement of deCode Genetics, led to more than one-fifth of the country's medical doctors signing a petition stating they will not provide data for it.

Ragnheidur Haraldsdottir, deputy permanent under-secretary in the Icelandic Ministry of Health and Social Security, defended the project. She said:

"The Icelandic Health Sector Data Base will be a database of non-identifiable information from patient records and will as such be a powerful research tool for improving health and advancing science."

The UK, with its large island population comprising a sizeable immigrant element, would be well placed to embark on a similar venture. In addition, NHS family records contain 50 years of data for most of the nation.

Medical databases will be discussed by Ms Haraldsdottir at the Royal Society of Edinburgh on Monday and, with Professor Meade and James Appleyard, former chairman of the World Medical Association's medical ethics committee, at the Scientific Societies Lecture Theatre, London, on February 15.

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