Ever since a scientist studying plant reproduction discovered the existence of genes contained in chromosomes in 1900, scientific knowledge has advanced dramatically. Today, just by looking at the minute “double helix” structure of genes, it is possible to map an individual's inherited characteristics in what is known as “genetic fingerprinting”. This makes it possible to identify a criminal, establish paternity and pinpoint inherited diseases from a drop of blood or a single hair. But with these advances, a number of ethical questions have also arisen.
Aldous Huxley wrote Brave New World as a science fiction novel in 1932, but his writings have since been feted as a prediction of things to come. The use of genetic testing is an emotive issue and fears have arisen of a “genetic underclass” being created.
It is logical that insurers have seized upon genetic testing as an effective way to establish risk, but the backlash from the media and, more recently, the government, has led to problems. Recently, the Association of British Insurers (ABI) bowed to pressure from the Human Genetics Commission (HGC), which was set up by the government, and agreed to extend a moratorium on genetic test results for life insurance linked to mortgages of up to £100,000. It will now cover all insurance policies worth up to £300,000.
The HGC argues that there is still a great deal of uncertainty about the accuracy and interpretation of genetic tests, and that if results were disclosed, they may promote social exclusion and deter people from taking part in screening programmes. The moratorium has been put in place to allow all interested parties to discuss genetic testing by insurers, until talks have taken place through the UK Forum for Genetics and Insurance, which facilitates discussion between the insurance and genetics industries and the public.
What the parties say
Politicians have also had a hand in influencing insurers to put a temporary block on the use of genetics. During the election, both Labour and the Liberal Democrats pledged their opposition to the use of genetic tests in insurance. Labour included a statement in its manifesto vowing to follow the HGC's recommendation that a moratorium should be in place.
Liberal Democrats MP Nick Harvey also introduced a ten-minute rule bill on genetic testing in insurance into parliament, called the Genetic Testing Consent and Confidentiality Bill.
In a statement, he said: “Genetic testing must not be used for non-medical purposes. If insurance companies and employers are allowed to access this information, it will quickly lead to an underclass of people unable to obtain insurance, mortgages or even employment.”
But the ABI still maintains that there is a place for genetic testing in the insurance market. One problem is that the media has often misreported the relevant issues. A number of papers have stated that insurers are pushing for compulsory testing. This, however, is completely inaccurate, says Vic Rance, spokesman for the ABI: “When you apply for insurance, the basis is that you tell insurance companies what you know about yourself – what the risk is that you want to transfer to the insurance company. We are not going to ask anyone to take a test, but if you have the result already, it should be disclosed.”
He adds that the public perception of the use of tests by insurers is one-sided. “Coverage has been alarmist and a lot of it has been untrue,” he says. “If genetic tests are not used, we can't use the good results any more than we can the bad ones. By disclosing test results, it means that people can be treated as a normal risk if their tests are negative.”
But this argument does not stand up with Dr David King, co-ordinator of the independent consumer pressure group, Human Genetics Alert. “It is absolutely illogical for insurers to prohibit people whose tests have given the all-clear to use them,” he says. “The problem is when the opposite happens – when people are forced to disclose results.”
King also raises doubts about the moratorium on testing. “I hope it is not being used as a way of diffusing pressure on safeguards for consumers. We have already had one insurer who has not been following the ABI's code of practice.”
Chris Daykin is the deputy chairman for the UK Forum for Genetics and Insurance, which was established by the Institute of Actuaries in 1999 as a discussion centre for interested medical, consumer, social and financial groups. He says the tests being lobbied for by insurers are not financially vital to the insurance industry, but insurers “do not want to give up at the starting line” as more genetic information could be uncovered in the future. Daykin adds that the tests will be particularly relevant for long-term care and critical illness policies.
High hopes
While the ABI has agreed to the moratorium, it is still allowed to use the tests for policies exceeding £300,000 and already uses the test for Huntingdon's Chorea. It is currently awaiting a decision on tests for Alzheimer's, familial breast cancer and ovarian cancer, which will apply to life, critical illness and income protection insurance.
The ABI has high hopes that putting a temporary block on using tests for policies worth less than this amount will help to take the emotion out of the issue of genetic testing.
Rance says: “All round, insurance companies are not in an equitable, fair position. What we are dealing with is a very sensitive issue, but we hope that we will be able to come to a sensible conclusion.”
However, there has been a long-standing history between the ABI and the HGC. The current debate can be traced back to reports of the House of Commons Science and Technology Committee in 1995 and the Human Genetics Advisory Commission (HGAC) in 1997.
The latter committee, a predecessor body of the HGC, also suggested that there should be a two-year moratorium, which insurers complied with on a voluntary basis.
As part of this system, the government set up the Genetics and Insurance Committee (GAIC) and the ABI published a code of practice. Since then, the HGC has carried out a number of research projects to find out what the public's opinion is on genetic testing.
The report Whose Hands on Your Genes, showed that nearly 80% of people thought it was wrong for genetic information to be used in deciding premiums and more than 60% thought genetic tests should not be shown to insurers before they set life insurance premiums.
So insurers still have a long way to go in their efforts to use genetic information and, in order to succeed, they need to get past pressure groups, the government and the public first.
