Inherited cancer test results and insurance premiums

Recent reports that UK insurers could soon seek approval to use genetic test results for inherited cancers to set premiums will have alarmed many individuals and families who could be affected.

As the leading charity providing support and care to those affected by the disease, Breast Cancer Care hears from women on an almost daily basis via our helpline and dedicated 'Family history and genetics' online forum, who fear they may be at a much higher risk of breast cancer than the general population due to a strong family incidence. 'If I think I could be at a higher risk of getting breast cancer', many ask, 'should I be tested?'

While a voluntary moratorium currently exists among insurers on the use of such tests on all policies except those of high value, any permissions given in the near future could pave the way for this to cease once the current agreement runs out in 2011, which would have a major impact on thousands of people.

The decision to pursue genetic testing is a highly complex, stressful one to have to make. Of course, a doctor will need to assess his or her patient's likelihood of being at greater risk first. While a relatively small number of breast cancers can be linked to faulty inherited genes and not all faulty gene-carriers develop the disease (between 5 and 10 per cent of the 44,000 individuals newly diagnosed with breast cancer each year are carriers of the BRCA1 and BRCA2 genes), pursuing the test to confirm that you may be at a far higher risk can present options: The first, to take up earlier routine screening on offer to those at high risk which could identify the disease in its initial stages; the second, the decision to have a preventative mastectomy. In some cases, either step could literally help save lives.

Concerns that insurers may have access to these genetic test results and use them as crude basis for refusing financial products from life assurance to mortgages could deter many from the test, adding an extra stress to an already difficult decision.

Often the insurance industry seems out of step with the reality of what having cancer can now mean in the twenty-first century. Yes, cancer is a major, life-threatening disease but increasing numbers of people are surviving thanks to incredible developments in treatment. Many of the people with secondary (advanced) breast cancer we support can and do continue to work, want to take holidays and live as normal a life as possible - and they do. Many find however, that they are routinely refused travel insurance despite being told by their doctors that the chances of their becoming ill on a short break is extremely unlikely. At the same time they encounter problems with other financial products. Surely insurers need to review their basis for calculating premiums and take account of medical advances?

The financial hardship endured by many people living with cancer is well-documented. Macmillan Cancer Support's 'Cancer Costs' report published in June 2006 estimated that an overwhelming 91 per cent of cancer patients' households suffer a loss of income and/or increased costs as a direct result of the disease. Among the under 55s, seven out of ten suffer a loss of income following a diagnosis, the average fall being 50 per cent. Many of the younger women we support are extremely concerned that their breast cancer or high risk of developing the disease could mean they will be prevented from being able to support themselves and their families financially.

In the US, the potential discrimination against those who have had genetic tests has been recognised. The 'Genetic Information and Non-discrimination Act' (GINA) was recently passed by the House of Representatives and will go before the Senate later this year. If passed, the Act would mean insurers cannot request or use genetic information about an individual when establishing premiums. At the same time it would stop employers using such information when employing or promoting those affected.

Surely it cannot be acceptable for insurers to discriminate on such grounds? Those at higher risk of developing cancer in the UK should be able to feel confident that they could seek a genetic test without the worry that they will be financially black-marked for doing so.