Moratorium on the use of genetic test results extended

18 June 2008

The Association of British Insurers (ABI) announced last week that a temporary moratorium on the use of genetic test results will be extended until 2014 (see BBC news). The moratorium, first established in 2001 (see previous news) and revisited in 2005 (see previous news), allows consumers to obtain insurance for themselves and their families without having to disclose adverse results of predictive genetic tests that might indicate a risk of serious disease in the future. The announcement follows a recent review of the moratorium; the next review will take place in 2011.

The moratorium applies to life insurance policies worth up to £500,000, critical illness coverage up to £300,000 and income protection of up to £30,000, comprising about 97% of insurance policies sold (see press release). Even above these thresholds, insurers are not permitted to ask for results of genetic tests unless they have been specifically approved by the Government’s Genetic and Insurance Committee (GAIC); the only test approved by GAIC so far is that for Huntington’s disease. This  condition is unusual in that the probability of eventually developing the disease is almost 100% for  individuals with a positive test result, whereas the presence of most disease-associated mutations is associated with rather lower probabilities of ever developing the disease (such as breast or ovarian cancer for individuals with BRCA1/2 mutations).

The moratorium came about as a result of a concern that the significance of genetic test results for life expectancy or onset of disease might be exaggerated by insurers and could lead to genetic discrimination. Although the ban is supported by the ABI and was recommended by the Human Genetics Commission (see previous news), some experts do not agree with it on grounds that the information generated by genetic tests is just like any other medical information and its disclosure to the insurers should not be prevented [Holm, S. (2008), BMJ, 334(7605):1196].