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UK insurers agree to extend genetic test moratorium

14 March 2005
By BioNews
Appeared in BioNews 299

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 between the ABI and the Government, published today, entitled 'Concordat and Moratorium on Genetics and Insurance'.

The new framework states that no one will be required to reveal the results of a genetic test unless it is first approved by the Genetics and Insurance Committee (GAIC), and is for insurance of more than £500,000 for life insurance, or £300,000 for critical illness and income protection insurance. The document also states that genetic tests taken as part of a research project do not have to be disclosed to insurers, a move aimed at reducing concerns over recruiting participants for such studies. Health Secretary John Reid said: 'Choosing to have a predictive genetic test can be life-saving, and nobody should be put off having such a test because of fears it will be used against them by insurers'.

Alastair Kent, director of the Genetic Interest Group, welcomed the announcement, saying that it provides 'a more robust framework and added certainty for people living with genetic disease'. The potential use of genetic test results by insurance companies has triggered concerns that families affected by genetic disorders could face unfair discrimination when applying for policies.

The charity Breakthrough Breast Cancer has carried out a survey, which found that a third of women with a family history of breast cancer would not take a genetic test if insurance companies were allowed to access this data. Most cases of breast cancer are not inherited, but around 5-10 per cent are due to a mutation in one of two genes, called BRCA1 and BRCA2. In 2004, 4635 people in the UK had BRCA1 or BRCA2 gene tests, around 1000 of which were predictive tests carried out on women with a family history of breast or ovarian cancer.

Currently, GAIC have only approved the use of one genetic test for use by insurers - that for Huntington's Disease (HD), an incurable brain disorder that first strikes during middle age. People affected by HD have a 50 per cent chance of passing on the condition to each of their children. HD is rare - only around 500-600 predictive tests for the disorder are carried out by the NHS each year.

Previously, there had been calls to turn the UK moratorium into law, mirroring current efforts in the US to pass similar legislation. Senators voted 98-0 in favour of bill S-603 - 'a bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment' - last month, although it now faces an uncertain future in the House of Representatives.

Cancer results to stay secret
The Observer |  13 March 2005
Concordat and Moratorium on Genetics and Insurance
UK Department of Health |  14 March 2005
Gene test data use is restricted
BBC News Online |  14 March 2005
Insurers to postpone genetic testing until 2010
The Times |  10 March 2005
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2 April 2007 - by Katy Sinclair 
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29 January 2007 - by MacKenna Roberts 
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