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More calls to introduce UK genetic discrimination laws

16 February 2006
By BioNews
Appeared in BioNews 346

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 of the Human Genetics Commission, made his comments after the issue was raised by an alliance of 45 medical charities, unions, lawyers and scientists. The group, headed by GeneWatch UK, has submitted a report on genetic discrimination to the all-party parliamentary group on disability.

Last year, UK insurers agreed to extend current restrictions on the use of genetic test results until November 2011. A five-year moratorium imposed by the Association of British Insurers (ABI) expired in November 2006. Previously, there had been calls to turn the moratorium into law, mirroring ongoing efforts in the US to pass similar legislation. Sulston says that 'everybody should be treated equitably regardless of their genetic inheritance. By the end of the moratorium in 2011 there will be so much more genetic information about that we are going to have to do something much more robust'.

Sulston's comments followed a parliamentary submission detailing evidence that insurance companies and employers in Australia and the US have used information from genetic tests to discriminate against people. The document raises concerns that information about a person's genetic risk of conditions such as heart disease and breast cancer might affect employer's decisions about recruitment or promotion. 'People should be able to take genetic tests without having to worry about how it's going to affect them financially in the future', said Helen Wallace, deputy director of GeneWatch.

Echoing Sulston's concerns, the 'Joint Statement of Concern Regarding  Genetic Testing in the Workplace' calls upon the Government to introduce laws to 'prevent discrimination by employers and insurers on the basis of genetic test information', and to 'guarantee genetic privacy and to protect the right of people to refuse to undergo genetic testing'. Anna Wood, Policy and Campaigns manager of Breast Cancer Care - one of the charities that backed the submission - said that 'women concerned that they may carry a gene which puts them at high risk of developing breast cancer are likely to be amongst the first to have to weigh the value of having a genetic test against the risk of discrimination'.

The submission coincided with a news report by the Daily Telegraph newspaper, which claimed that the Association of British Insurers (ABI) was expected to apply later this month for permission for its members to ask women if they have been tested for mutations in the BRCA1 and BRCA2 genes - which confer a high risk of breast and ovarian cancer. However, a statement by the government's Genetics and Insurance Committee (GAIC), which deals with such applications, refuted the story, saying that 'there are currently no applications under consideration by GAIC'. It went on to say that the ABI 'will not be submitting any applications to use predictive genetic tests, including for breast cancer during 2006 and 2007', adding 'if any applications are received in the future then, as part of the review process, the relevant charities will be involved, and will be asked for comments'. A spokesman for the ABI told the BBC news website that the Telegraph's story was 'alarmist, irresponsible and factually incorrect'.

Breast cancer gene insurance risk
BBC News Online |  14 February 2006
Keep genetic testing private - health and human rights at risk
GeneWatch |  14 February 2006
Stop genetic discrimination by insurers, says watchdog
The Daily Telegraph |  15 February 2006
Women taking breast cancer test may face insurance ban
The Daily Telegraph |  14 February 2006
14 May 2007 - by Danielle Hamm 
According to recent news reports, the UK's Association of British Insurers (ABI) may seek permission to use the results of predictive genetic tests for inherited breast and ovarian cancer, to set insurance premiums. Mutated versions of the genes BRCA1 and BRCA2 are known to confer a high...
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...
29 March 2006 - by Anne Begg MP 
Genetic testing potentially holds the key to providing many treatments, and possibly even cures, for a whole range of diseases. The knowledge that someone has a genetic condition or propensity may determine lifestyle choices, or help in early detection so that remedial treatment can prevent the symptoms from occurring. As...
27 February 2006 - by Dr Alison Stewart 
The last two weeks have seen yet another outcry on the topic of 'genetic discrimination' in insurance. The main thrust of the argument is that because we cannot do anything about our genes it should be illegal to treat us differently on the basis of our genetic risk of death...
20 February 2006 - by Dr Helen Wallace 
Last week, in a Joint Statement of Concern, forty-five organisations and individuals expressed their fears about the lack of safeguards to prevent genetic discrimination. The Statement calls on the Government to legislate against the use of genetic test results in employment and insurance. Many European countries have such laws, however...
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...
5 September 2005 - by BioNews 
A German government advisory council has recommended a new law to prevent employers from using genetic test results to discriminate against employees, the British Medical Journal reports. However, the National Ethics Council's recommendations have been described as a step backwards by the country's Green Party. All the political parties are...
16 May 2005 - by BioNews 
The Australian Government is providing $7.6 million over four years to set up an independent advisory body on human genetics. The move, revealed as part of last week's Budget announcements, follows a key recommendation made by the Australian Law Reform Commission (ALRC) in their 2003 report: 'Essentially Yours: The Protection...
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...
21 February 2005 - by BioNews 
The US Senate has unanimously approved a bill that would ban employers and insurers from using genetic information. Senators voted 98-0 in favour of the bill last Thursday, although it now faces an uncertain future in the House of Representatives. In 2003, the Senate passed a nearly identical bill...
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