Medical charity in row over gene patents

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A pressure group representing millions of people with genetic diseases has been accused by medical charities of misrepresenting their views over the patenting of human genes and caving in to lobbying from the pharmaceutical industry.

The result could be higher medical costs for many people who seek genetic testing in the future. In the short term it could cause a split within the group, which was resolutely opposed to genetic patenting in 1995 - but now favours it.

The Genetic Interest Group (GIG), which represents 120 special interest organisations such as Mencap, the Huntington's Disease Association and the Muscular Dystrophy Group, was crucial in persuading many members of the European Parliament to vote in favour of a revised directive on gene patenting earlier this month. GIG paid for a PR company in Brussels and arranged for people with genetic diseases to lobby the European Parliament.

In 1995, GIG opposed a proposed European Directive on gene patenting. Since then it has received more than pounds 45,000 from pharmaceuticals companies such as SmithKline Beecham, Zeneca Diagnostics and Ciba-Geigy, which would all benefit from gene patenting.

Alistair Kent, GIG's director since 1993, said yesterday: "It's unsurprising that where we have interests in common with the pharmaceuticals companies they should seek to help us present that case. But our policy is formulated within GIG, not by them."

A spokesman for the Association of British Pharmaceuticals Industry said: "There was categorically no money given on the basis that they would change their views on the subject [of gene patenting]."

Gene patenting is of huge commercial value because it can be used to test for inherited disorders in children and adults, and could potentially be used to devise cures for rare diseases. A company which patents a test for a gene sequence - say, for a gene causing breast cancer - has a huge potential money-earner.

But many scientists have complained that allowing companies to claim rights over a naturally-occurring item - in this case, a gene - stifles research and pushes up medical costs, because the patents have to be licensed. A cancer gene test might have to be licensed by each individual hospital trust within the NHS.

GIG has also been accused of failing to consult its own medical advisers, who are against many of the principles which MEPs voted for.

One of its medical advisers, Dr Nick Dennis, has complained that he was not consulted about GIG's new position. "In common with the majority of clinical geneticists in this country, I felt the patenting of gene sequences would seriously impede further genetic research and its application for the benefit of patients and their families," he said.

Mr Kent said that the medical advisers were not consulted because the policy of the British Society for Human Genetics, a medical group, "was not a million miles different from what we were advocating".

But in a letter to MEPs, Professor Andrew Read, president of the BSHG, has protested about claims by GIG that BSHG supported gene patenting.

"I wish to make it clear that the BSHG has at no time expressed support for the principle that naturally occurring gene sequences should be patentable," he said.