Insurance companies yesterday agreed to a five-year ban on using genetic tests to fix premiums after intensive lobbying by patient groups and MPs who feared the development of an uninsurable "genetic underclass".
In a deal thrashed out with the Department of Health, the Association of British Insurers (ABI) has agreed to the moratorium in which nobody will have to disclose genetic test results to insurers unless they are buying a policy which will pay out more than £500,000 on death or £300,000 on critical illness. The ABI said that 97% of policies would fall under the 'scheme.
In April MPs on the select committee on science and technology demanded a minimum two-year ban on insurers using genetic tests. The ABI agreed to a temporary curb, but surprised observers yesterday by extending it to five years. It denied that the voluntary ban followed threats of legislation.
"We have not been sat upon by the government. We have won support from the government for this approach, which will allow us to have a rational and informed discussion about the best way forward for the UK on genetics and insurance," said a spokesman.
Unlike in many European countries, where legal or voluntary bans have been in place for years, British insurers have been reluctant to ignore the results of genetic tests.
Last year 65 insurance companies admitted receiving genetic test information, which was often used either to increase premiums or deny insurance altogether. Tests have so far been largely confined to Huntington's disease and familial breast or ovarian cancer, but insurers had applied to begin using them for early onset of Alzheimer's disease.
The Alzheimer's Society, one of the most vociferous opponents of the use of genetic tests, welcomed the ban. "It's fantastic. We have been campaigning on this issue since 1994, but we had only been expecting a three-year ban at best," said a spokeswoman.
But GeneWatch, a science and policy group, described the move as "hopelessly inadequate". Deputy director Helen Wallace said: "We do not think a voluntary agreement is sufficient to protect people from discrimination and there should be a legal ban in place."
The agreement could pave the way for widespread genetic screening of the public for bowel cancer and other disorders as fears of misuse of the information fades. "Today's agreement gets the issue out of the way for genetic scientists who have been thinking of offering testing to the broader population, such as bowel cancer screening. This will enable them to get it going," said John Gillott of the Genetics Interest Group, an alliance of patients with genetic disorders.
The Imperial Cancer Research Fund said in July that it had developed a cheap genetic test that could dramatically cut the number of people dying from bowel cancer, which killed 17,000 last year.
