Genetic science is making leaps and bounds in medical research but causing headaches for life offices. With a new moratorium recently agreed, Peter Madigan investigates
Along with stem cell research, advances in genetic science has been the most exciting arena of medical endeavour in the last 20 years. Since the discovery of the famous double helix in 1953, Deoxyribonucleic Acid (DNA) has been providing scientists with a wealth of answers not only about how the human body works, but perhaps more importantly, how individual genes can be the major contributory factor in serious illness and premature death.
The pinnacle of genetic research was undoubtedly the completion of the Human Genome Project in 2003. This so-called 'book of life' promised to give scientists the tools to locate the genes behind the most debilitating and serious of medical conditions, but two years on - although advances have been made - discoveries have not been as dramatic as anticipated.
Media reports of 'designer babies' and the suggestion that human beings now have the ability to alter the course of their own evolution are, in the very least, gross exaggerations. Less bombastic developments that have garnered little press attention are raising questions for life insurers however.
"Genetics is a new and fast-moving science but we are unsure of the direction it is moving in. For this reason we agreed the Genetics and Insurance moratorium with the Government to give us time to debate the issue in a rational way," says Richard Walsh, head of health at the Association of British Insurers (ABI).
The moratorium was first established in 2001 between the ABI and the Department of Health's Genetics and Insurance Committee (GAIC) for an initial term of five years. The two bodies recently agreed a further five year extension to keep the moratorium in place until November 2011. Under the terms of the agreement, insurers are unable to ask applicants to disclose details of any predictive genetic test they have had. The only exception to this rule is for clients who have had a genetic test for Huntington's Disease and who are seeking more than £500,000 of life cover, more than £300,000 of critical illness cover or more than £30,000 annual income protection benefit.
Public fears
"Huntington's Disease is the only exception because it is the only condition that we so far know of, that means if you test positive for the Huntington's gene you will definitely go on to develop the disease," says Alan Tyler, committee member on the Genetics and Insurance Committee. "It is unique in that other inherited conditions are multi-factorial in nature. You may have the disease-causing gene but an external factor is needed to switch it on. At the moment in genetic science, we have identified some of these genes but we do not yet know how they work," he adds.
The extension of the moratorium may be going some way toward allaying public fears. Patient groups have voiced concern over the creation of a 'genetic underclass' if genetic tests become widespread. "Their main worry is that, should genetic testing become commonplace, we will be treating people differently from others," says Walsh. "Underwriting on family history means that people are put into a pool with people of similar risk. With a genetic test, we would not be putting people into a pool but assessing them individually and we have never been in that situation before."
Such fears, although reasonable, appear to be only looking at one side of the argument. At the moment, people with a family history of Huntington's Disease will have their premiums loaded, because they have a 50% chance of inheriting the disease from the affected parent. Although a person that tests positive for the Huntington's Disease gene would receive an even heavier loading, those who have taken a genetic test and found to be without the defective gene should qualify for standard rates.
The reality that genetic testing can result in cheaper premiums seems to have been lost in the discussion over whether it is ethically correct to use genetic tests, but it is easy to forget that insurers themselves have their own reasons to keep DNA testing out of underwriting. Apocryphal reports have emerged in the United States of some internet-based companies that are allegedly offering anonymous genetic testing. On the basis of these findings, people who discover they may be at very high risk of contracting a disease can then seek life or critical illness cover in the knowledge that their medical records will make no mention of a genetic test.
Despite this, with the moratorium in place in the UK, anyone seeking less than half a million pounds worth of life cover does not have to declare their test results, regardless of the outcome. Should this not be worrying insurers?
"Well no, not really since we will still insure that person on the basis of their family history and set their premium accordingly," says Walsh. "Insurance is about information and if customers do not have the information and neither do we, then it all balances out." While such an assessment may be sound for the time being, some insurers appear convinced that genetic tests are growing ever more important and that one day providers will have to face them.
"When the moratorium extension was announced there was a collective sigh of relief from life offices since we don't have to worry about this for a few more years, but there is definitely a sense of inevitability about genetics," says Mick James, marketing manager at Standard Life. "These tests will become a practical reality in the next 10-15 years and if more people are having them then underwriters will have to ask about them. Underwriting is all about risk and if genetic tests prove to be another way of minimising the risk that an applicant represents then they will want to use them."
Long-term solution
One of the main purposes of the GAIC is to come up with a long-term solution to the problem that genetic advances will pose for insurers in years to come. As well as debating the ethical and practical considerations involved, the committee is also charged with ultimately resolving the issue, although at this juncture, it seems that little has been agreed upon.
"There are really three possible solutions under discussion," says Tyler. "On one side patient groups are pushing for legislation to ban insurers from using genetic tests in underwriting while on the other we have the option of giving insurers free access to all applicants' results, something that I think most insurers would like. The other alternative is to simply keep the moratorium in place," he reveals.
While the difference between introducing legislation and retaining the moratorium seems purely semantic, Walsh is adamant that putting the matter on the statute book is not in anyone's interest: "Once legislation is in place that means things are set in concrete. Not only is it then very hard to change the legislation if circumstances change in the future, it is also a slow process to even get the legislation passed in the first place. Keeping the moratorium in place is really the best solution."
So are any other conditions under consideration by the GAIC to allow genetic test results to be used in underwriting? The committee is currently considering the validity of allowing insurers to use genetic test results in two types of hereditary breast cancer. Those with the diseased gene are very likely to go on and develop the cancer although it is not definite as in the case of Huntington's Disease.
"The cases are under discussion but these gene-triggered breast cancers only account for around 5% of all breast cancers," says Tyler. "These are the only conditions being reviewed at the moment but inevitably the list will be added to in the future as other disease genes are located."
In spite of all the press hype, the concerns from insurers that test results will transform underwriting and the GAIC's continuing search for a long-term solution to the genetics issue, Tyler is convinced that we have all allowed our imaginations to run away with us. "While our understanding will move on, genetics may not turn out to be as big a factor in insurance as many have imagined it would be. Without the introduction of mass screening I cannot see it changing the life insurance picture that dramatically," he concludes.
With no one lobbying for the abolition of the moratorium, and providers admitting that genetic science is moving too quickly for life offices to keep up with developments, the industry finds itself in a state of flux. For a profession that thrives on actuarial evidence and certainty, it must be disconcerting to be unable to act until the pace of discoveries begins to stabilise. Until then the moratorium certainly appears to be the best option.
COVER notes
The moratorium on the use of genetic testing in insurance has recently been extended to November 2011.
The only exception to the moratorium is if there is a positive genetic test for Huntington's Disease and the applicant is seeking more than £500,000 of life cover, £300,000 of CI or more than £30,000 annual IP benefit.
The Genetics and Insurance Committee is currently considering allowing two gene-based breast cancers to be made permissible for genetic testing.
