Charities join forces against patenting of human genes: Drug firms' actions 'could delay treatment for people suffering from genetic disorders'

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The Independent Online
THE RUSH by international drugs companies to patent human genes will delay treatment and prolong the suffering of people affected by genetic disease, representatives of patients and their families claim.

The Genetic Interest Group (Gig), the national group which brings together more than 100 charities concerned with genetic disorders, is the first significant body publicly to oppose the patenting of human genes. For several years, American companies have been patenting even partially analysed human genes, forcing European research institutes to follow and prompting unease among researchers in universities and in some drugs companies.

Genetic disease accounts for half of all childhood deaths in Britain, according to Ann Hunt, chair of the Gig. At least 4,000 conditions result in disabling or fatal illnesses, such as Huntington's, Tay Sachs, or cystic fibrosis, and about 15,000 babies are born each year with significant genetic disorders.

Clinical trials of gene therapy for cystic fibrosis began in Britain this summer, but although such developments offer hope to families afflicted by genetic disease, Ms Hunt warned 'this progress is being put at risk by decisions of the Patent Office to permit commercial companies and research institutes to take out patents on the actual structure of the genes themselves'.

The Gig also criticised the attitude of the Department of Trade and Industry, which is opposing proposals by the European Commission to ban the patenting of human genes. Its director, Alastair Kent, said: 'Our view is that there is something fundamentally unacceptable about any institution, corporation, or individual having ownership over part of a human being.' Genes and DNA are natural parts of the human body not patentable 'inventions', he continued.

The Government wants genes isolated outside the human body to be patentable, but this was a false distinction, Mr Kent said. 'It makes no difference to a gene whether it is inside or outside the body.'

He added: 'Before the tendency to patent reared its ugly head, there was significant international collaboration between scientists. But researchers have told us of difficulties that the requirement to patent has put in the way of that collaboration.' Patents will increase the costs of research and the payment of royalities will increase the burden on charities who have to raise the funds to develop treatments for rare genetic disorders where commercial companies do not see market opportunities.

Dr Sue Chamberlain, a genetics researcher at St Mary's Hospital Medical School in London, said that when she tries to collaborate or exchange information with other researchers she finds 'it's a closed shop now in the US . . . most researchers have their own companies on the side'.

Vaccination against measles may be linked to a rise in cases of chronic inflammatory bowel disease in children and young adults, writes Liz Hunt.

The measles virus has been isolated from the diseased gut of people with Crohn's disease, and scientists are close to establishing whether a 'wild-type' virus that occurs naturally, or a vaccine-related virus is implicated. The vaccine contains live, treated virus which triggers the immune system to produce protective antibodies, but is not infectious and should not cause symptoms. More than 40,000 Britons have Crohn's disease, including an increasing number of children.

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