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Call for UK genetic discrimination laws

17 May 2004
By BioNews
Appeared in BioNews 258

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.

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2 April 2007 - by Katy Sinclair 
The US House Energy and Commerce Committee has voted in favour of legislation to prevent insurers and employers from using genetic information to discriminate against individuals. Both the Ways and Means Committee and the Education and Labour Committee have also voted in favour of the legislation, which...
29 January 2007 - by MacKenna Roberts 
The proposed Genetic Information Nondiscrimination Act 2007 is poised for fast-track consideration through the US Congress. It was reintroduced into the US House of Representatives earlier this month (HR 493), with its prospects for successful passage into law appearing better than similar past attempts. The Act aims...
16 February 2006 - by BioNews 
Nobel prize winner Sir John Sulston has repeated his call for new UK laws to prevent genetic discrimination. He says that when the current moratorium on the use of genetic tests results by insurers runs out, in November 2011, it should be replaced by legislation. Professor Sulston, who is vice-chair...
4 November 2005 - by BioNews 
Some Australian insurance companies are discriminating against people who have taken predictive genetic tests, according to the government-funded Genetic Discrimination Project. A survey carried out by the group identified 87 people who have suffered 'specific instances of negative treatment', according to New Scientist magazine. Team leader Kristine Barlow-Stewart reported the...
14 March 2005 - by BioNews 
The current restrictions on the use of genetic test results by UK insurers will be extended until November 2011, the government has announced. A five-year moratorium imposed by the Association of British Insurers (ABI) was due to expire in November 2006. The new agreement forms part of a binding framework...
6 February 2004 - by Professor Graeme Laurie 
The Human Genetics Commission (HGC) MORI poll of public attitudes towards human genetic information showed that reliance on genetic information in insurance decisions is considered to be the least appropriate use of that information. Four out of every five respondents decried such a use. It was as a result of...
2 February 2004 - by BioNews 
UK insurance companies should have access to genetic test results so they can set fair insurance premiums, according to an article published in the Lancet medical journal last week. Nick Raithatha and Richard Smith, both health economists at the University of East Anglia in Norwich, UK, argue that information from...
17 October 2003 - by BioNews 
After seven years of negotiation, US Senators have voted 95-0 in favour of new laws that will prevent employers and insurers from using personal genetic information. The bill will now go to the House of Representatives, where supporters of a similar proposal say they have the backing of 221...
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