Genetic testing, insurance and employment

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, in Britain, the current agreement between the Government and the insurance industry is partial, temporary and not legally binding. There is also no legislation to prevent employers using genetic test results to decide who gets a pension or a job.

The current voluntary agreement between the Government and the Association of British Insurers (ABI) adopted in 2005 (the 'Concordat') adopts the principle that insurers have the right to seek access to predictive genetic test results, along with all other relevant risk information (the 'right to underwrite'). At the same time, it extends the voluntary moratorium on the use of most predictive genetic test results to 2011. Whilst the moratorium remains in place, tests approved by the Genetics and Insurance Committee (GAIC) can only be requested when people apply to buy high-value insurance policies (over £500,000 of life insurance, or over £300,000 for some other types of insurance). Currently, only one test (for Huntington's Disease) has been approved. However, after 2011 approved genetic tests could become routinely used in assessing insurance applications. Recently, the ABI informed the GAIC that it intended to submit applications this year to use BRCA1 and BRCA2 genetic test results, linked with an increased risk of breast and ovarian cancer.

The ABI's continued defence of its 'right to underwrite' is based on concerns that people who have adverse genetic test results will buy more insurance and make more claims, increasing costs. However, the potential for 'adverse selection' based on genetic tests is extremely limited, because only a small number of people will have highly predictive results. The actual impact on insurance industry finances would be even smaller, because people do not necessarily choose to increase their cover, or have the financial resources to do so.

Insurers always exercise a choice about which risk categories to use, and this choice is influenced by social and ethical considerations - for example, ethnic group is normally not used to decide insurance premiums. Genetic tests base risk categories on factors that a person cannot change (their genes), rather than factors that they can, and imply a life-long categorisation as 'at high genetic risk'. For modifiable risk factors, increased premiums arguably act as an incentive to improve health (for example, to quit smoking), but for genetic risk factors increased premiums may act as a disincentive to take a test (or sometimes as an incentive, if insurance has already been refused as a result of family history). This financial disincentive (or incentive) is problematic because it may not coincide with what is best for the health and mental well-being of the individual. The fact that genes cannot be changed also underlies the widespread public view that using genetic tests to set insurance premiums is basically unfair.

The main argument against insurers' use of genetic test results is the impact this can have on medical decisions and the anxiety and uncertainty it would create for patients. A recent survey, by the charity Breakthrough Breast Cancer, found that nearly a third of women with a family history of breast cancer might not take the BRCA1 and BRCA2 genetic tests if they had to reveal the results to insurers. The lack of legislation means that these women face continuing uncertainty about whether they will suffer discrimination in the future, as they may live with an adverse test result for decades.

In the future, requests to reveal genetic test results could also come from employers, with controversial implications for people's access to jobs or employment benefits. The Disability Discrimination Act does not cover people who have adverse genetic test results but no symptoms of disability or illness. There are widespread concerns from trade unions and some scientists that screening and selecting workers could become a damaging alternative to reducing workplace hazards, or be used to try to cut employers' pension or insurance costs - as has already happened in the US.

In GeneWatch's view, people should be able to make the difficult decision about whether or not to take a predictive genetic test on health grounds alone. A guarantee of confidentiality is critically important in the context of these medical decisions and must take precedence over any so-called 'right to underwrite'. Following the launch of the Joint Statement, the insurance industry has changed its mind and written to the GAIC to say it will not be submitting any applications until at least 2008. We hope this will create an opportunity for the Government to draft legislation to prevent genetic discrimination by both insurers and employers.