The Imperial Cancer Research Fund (ICRF) is a world leader in cancer research. The charity employs over 1,000 doctors and scientists to discover new responses to cancer, examine what causes it, consider how it can be prevented and to find new treatments to improve the quality of life for people suffering from it.
And in response to Health Secretary Alan Milburn’s recent speech promising to make genetic testing more widely available on the NHS, it recently called for a two- to three- year moratorium on insurers using people’s genetic information.
The government’s Human Genetics Commission (HGC) report on the social and ethical issues recommends a two-year moratorium on the use of such data – and the government has pledged to back up the ban on the use of gene tests by insurance companies with legislation if necessary.
The ICRF supports this because it fears people may avoid having the tests, if their insurance companies wanted to see the results, particularly those for breast and ovarian cancer, where a test could save their lives.
The charity has stressed the need for the HGC to make the recommendations for a moratorium a priority, especially since HGC statistics, published in November 2000, show that 75 per cent of people believe insurers should not have access to genetic test results.
The insurance industry is opposed to a full moratorium because this could lead to “adverse selection” – where those people at highest risk take out insurance. But most medical and patient groups and charities are urging the government to ban what they call “genetic discrimination”.
ICRF director general Sir Paul Nurse explains that the charity has agreed to a moratorium approach to prevent the inappropriate use of genetic information by the insurance industry because it believes the science needs time to develop.
He says: “Where a person has the genetic defect for Huntingdon’s disease, it is more than likely that that person will develop the disease. It is not as clear cut with any of the breast cancer genes. We do not yet know why people with the gene may or may not get the disease so there needs to be a wider debate about the ethics from the general public.
“Our main concern is that women will be deterred from having a test at all because of potential problems getting insurance.”
ICRF genetic counsellors have said that some people who had been referred to them had not attended for fear they would be denied insurance or that they would be unable to meet increased premiums as a result of having a positive genetic test.
Nurse reprimanded the insurance industry for being “far too eager” in its use of genetic tests – “despite the apparent lack of evidence that supports the tests’ predictive values”.
The charity sees insurance as a necessity, for example, for mortgages and concedes that today’s society is reliant on insurance to provide pensions and care in old age.
But Nurse raises two objections. Firstly, what evidence do insurance companies use for justifying the continued use of tests that have not been approved by the Genetics and Insurance Committee (GAIC), a government body which examines actuarial evidence for a number of genetic tests?
(It is not compulsory for insurance applicants to undergo a genetic test, however, if an individual has had a test that the Association of British Insurers sees as relevant and has not been ruled out by the GAIC, that person must tell the insurer.) Secondly, will all applicants who have been turned down for insurance on the basis of a test be informed of the policy changes?
Nurse says: “The decision to take a genetic test can be a very difficult one. People should not have the added pressure of incurring possible financial burdens as a result of taking steps to do something about their long-term health.
“Research into the genetic basis of diseases can generate revolutionary medical benefits for the whole of society. Genetic tests have the potential to be used to help deliver those benefits and should not be hindered by individuals’ fears of adverse financial consequences of taking the tests.”