Nobel Laureate Sir John Sulston has called for new UK legislation to prevent genetic discrimination. The former head of the Sanger genome sequencing centre in Cambridge presented his proposals to the Human Genetics Commission (HGC) last week. Sulston, a member of the HGC, told the Guardian newspaper that 'the main worry with genetic tests is the abuse of information'. A moratorium is currently in place to prevent insurers using genetic test results, but this is due to expire in November 2006.
According to the Guardian, Sulston's consultation document states: 'We affirm that humans are born equal... and that neither genetic constitution nor genetic knowledge should be used to limit that equality... this principle should be incorporated into UK legislation and practice'. He told the newspaper that genetic discrimination legislation was equivalent to racial and sexual equality laws, saying that 'this could be very hard to police and enforce, but it is nevertheless worth pushing for'. Without good laws to protect people, he warned, society risked losing out on the medical benefits of genetic testing.
'People are quite right to be leery about having genetic tests until we have solid laws in place to protect their rights,' said Sulston. But according to Malcolm Tarling of the Association of British Insurers, such legislation would be 'contrary to the way insurance operates to the benefit of everybody'.
In October 2003, the US Senate approved the Genetic Information Nondiscrimination Act, after seven years of negotiation. The proposed new federal legislation would ban all employers, public and private health insurance providers and employment training programs from making decisions based on someone's genetic information. However, the bill has since stalled, and has yet to be voted on by the House of Representatives.