UK insurance moratorium on use of genetic data extended until 2014

The Association of British Insurers (ABI) announced last Friday that a moratorium on the use of genetic test results by UK insurance companies has been extended until 2014. The agreement prevents insurance companies from requesting predicative genetic test results from customers which could be used to deny or increase the cost of cover. Stephen Haddrill, Director General of the ABI, said 'the moratorium on the use of predictive genetic test results works well for consumers. It means people can insure themselves and their families, even if they have had an adverse result from a predictive genetic test'. It is hoped the agreement will instil public confidence that genetic test results will not be used against individuals.

The moratorium was agreed to for the first time in 2001 and was due to expire in 2011. It covers life policies up to £500,000 and critical illness insurance up to £300,000. Above this threshold if insurers want to use genetic test results they may only request results from tests approved by the Genetics and Insurance Committee (GAIC), a non-statutory advisory body, which at present only includes the test for Huntington's Disease.

The issue of the use of genetic test results for insurance purposes has generated controversy since scientists have claimed that it is possible to test for genetic 'markers' that denote diseases such as heart disease and cancer. There are currently hundreds of genetic tests available and in the absence of the moratorium insurers could refuse cover to individuals where tests reveal a predisposition to a certain condition or disorder. Supporters of using genetic test results point out that such information is no different to the information insurance companies currently gather from customers. Critics argue, however, that genetic testing may not always be conclusive and can be used in a discriminatory way. Previously, Professor Richard Ashcroft, a biomedical ethicist from Queen Mary, University of London, argued in the British Medical Journal, 'it is important to note how genetic information can be misunderstood, or its importance overestimated, and therefore used in discriminatory ways that would not be justified on sound actuarial grounds'. He highlighted the BRCA1 gene in breast cancer, which makes little difference to a woman's life expectancy, but which could be interpreted as a grave risk of the disease and early death by an insurance company.

The moratorium in the UK remains only a voluntary agreement and some commentators have called on the Government to introduce legislation similar to that in the US to ensure the public is protected in law against the use of adverse genetic data. Last month President Bush signed into law the US's long-awaited Genetic Information Nondiscrimination Act ('GINA'), which prevents insurers and employers from requesting predictive genetic testing or accessing their results. Employers will also be prevented from hiring or firing employees on the basis of genetic tests. There is no such legislation on the UK's statute books, however.

It is reported that the moratorium will be revisited in 2011. There are currently no new applications for the use of predictive genetic tests to the GAIC and the ABI has said it does not intend to submit any this year.