Genetics. The word often evokes images of a freakish new world inhabited by cloned sheep and square tomatoes, where the carefully selected and fittest survive. But as insurers routinely ask questions about medical history, health and family history, why is the disclosure and use of genetic test results so controversial?
“The insurance industry has had a pretty bad press,” says Peter Maynard, research manager at Swiss Re. “The main focus has been on negative issues – the belief that genetic tests mean an invasion of privacy and that insurance will be more difficult to buy.”
Such worries are based on fears that insurers want to use genetic tests in underwriting life and health insurance policies. But this is unlikely to happen due to the ABI’s mandatory code of practice on genetic testing, issued to all 440 members last December. This seeks to strike a balance between insurers’ needs and consumer rights, and is to be examined at least once a year to keep up with research and a review is due before the end of 1998.
Under the rules, genetic test results will only affect health insurance if they show a clearly increased risk of illness or death.
Sandy Raeburn, professor of clinical genetics at the University of Nottingham, is the ABI’s genetics advisor. “It’s certainly not a boring life. I’m loving it,” he says. He reckons the guidelines are the first of their kind in the world.
The code applies to all types of insurance, including income protection, critical illness and long term care. Insurers cannot ask consumers to take genetic tests, but existing test results must be provided when requested.
Ultimately, says ABI spokeswoman, Suzanne Moore, the rules are a “minimum standard” and some insurance companies may decide they need less information.
So far, genetic tests are of underwriting relevance to just eight, mostly very rare, diseases which are listed in a matrix. These include Huntington’s disease, Alzheimer’s and certain types of hereditary breast cancer. Only people with a strong family history are currently tested, and this is usually done within the NHS.
Underwriters and chief medical officers assess any details disclosed, decide if they are relevant and – if so – what level of premium is required. Interpretation is complicated, varying between insurers and individual cases. The table is designed to ease this process, but, rather perversely, highlights its complexity.
For instance, it says Alzheimer’s is of “medium relevance” to calculating premiums for life insurance products, but of “high relevance” to critical illness, income protection, PMI and long term care policies. Hereditary breast cancer, meanwhile, is of “high relevance” to the rates of most life and health insurance policies. Professor Raeburn revealed that a new, clearer table is presently being developed.
A genetic test may tell someone their risk of developing an inherited disease, but it is not a certainty. Lifestyle and environmental factors are crucial too. The only exception would probably be for a disorder like Huntington’s, which is an untreatable neurological condition. “Someone who’s had this test can be sure they’ll develop it,” says Tony O’Leary, deputy managing director at ERC Frankona.
Most insurers will disregard a test result if they do not understand it, or if it has no bearing on the cover requested. Nevertheless, underwriters say it is vital they have a good grasp of the data at their fingertips. This can be problematic, especially as genetics is still in its infancy and geneticists sometimes disagree about the significance of results themselves.
“Interpretation of data can vary between geneticists. Some can be more bullish than others,” explains Paul Cooper, principal underwriter at Swiss Re. “We have to listen to the advice of experts, but in the current state of knowledge they may not be of one mind. We have to make judgements about what is reasonable.”
Some underwriters are concerned that not asking consumers for genetic test results will lead to adverse selection, where they arrange lots of protection because they know they are a high risk. “There’s nothing illegal about it. You know you’ve got a terminal disease, but you don’t say and still take out insurance,” says O’Leary. For instance, a policyholder takes out extensive critical illness cover after discovering he is statistically more likely to develop cancer. But this could raise premiums for others. Maynard explains insurers want information to help keep premium rates at a reasonable level and to ensure fairness between risk groups.
Consumers’ concerns have been well documented. In 1995 PPP healthcare carried out research which discovered people were confused and uncertain about what genetic testing is, but when the purpose of it was explained most (88%) said they would have a test. Many, however, would not give the results to insurers.
Swiss Re recently found that while a lot of people think tests are a good idea, just over half interviewed were unwilling to take one because they were not interested, or thought it would cause unnecessary anxiety. Only 19% identified insurance as a concern, ranking it even lower than “interfering with nature”. Geoff Brown, chief actuary at BUPA, and a member of the Faculty and Institute of Actuaries’ healthcare committee, says some people are worried “those with a clean bill of genetic health will get preferential terms, while others will be genetically disadvantaged”.
According to O’Leary, consumers also fear positive results will make them uninsurable, although this is unlikely. “Even with Huntington’s you would still be able to get some form of health insurance,” he says.
There are also concerns about confidentiality.
Insurers point out it is often in the public’s best interests to disclose the result of any tests which may affect their insurance. Jack MacNamara, chief underwriter at Lincoln, argues insurers would have to put greater emphasis on family history – and perhaps charge higher premiums – if they were prevented from using genetic test results.
Those who test positive could even be a better risk than a negative result as they may take action and change their lifestyle and diet, explains Hannover Re’s chief actuary, Julie Hopkins.
Professor Raeburn agrees: “Insurance companies are not going to rush in with a negative interpretation. They will look at preventive measures.”
Consumers are also concerned that insurers will `cherry pick’. The ABI code bans it – favourable test results cannot be used to offer lower premiums – but Maynard reckons insurers may subconsciously do so by refining the underwriting procedure, and gradually move away from pooling the risk.
Professor Raeburn says geneticists have sometimes unwittingly added to the public’s misconceptions. “There’s a tendency to say: `I want you to think about it before you have this test because it could cause problems for you getting insurance’.” If patients are being told this, taking out cover will be the last thing on their minds.
He admits some of his colleagues do not know enough about the principles of insurance, which are similar to their own job of assessing risk. Raeburn reckons they should recommend patients direct their insurance concerns to insurers more often. This means genetic queries would increase and help to stimulate research into developing more creative policies to help families get the products they need. Certainly, a report from the Human Genetics Advisory Commission last year suggested such products are needed.
But the ABI’s code allows insurers time to learn about genetics. The latest ABI committee bulletin outlines new research which may have implications for interpreting the results of Alzheimer’s sufferers and women at a high risk of developing breast cancer.
The committee has also drafted a policy for developing research into genetics and insurance. Brown thinks there is a lack of research and information on the impact of genetics, and is chairing a new working party looking at this area.
It is likely genetic tests will be used more in the future. The human genome project, started around 10 years ago, will be finished by 2003. It aims to identify all of the 80,000 genes in human DNA. Hopkins feels when genetic abnormalities are better understood, drugs maybe available that can treat them, which will be taken into account by underwriters.
And as knowledge of genetics by insurers grows, the way they use this information will increasingly come under the microscope.