The public is still uneasy over the insurance industry's keenness to use genetic testing, leading to an extension to the moratorium agreed on in 2001. Lynn Rouse explains
The debate surrounding the use of predictive genetic test results for underwriting purposes on protection policies is emotive, with patient representative groups arguing that people will be deterred from undergoing tests for fear of being unfairly discriminated against. And the tide of public opinion does not seem to be moving, with breast cancer charity Breakthrough stating: "Currently, more than three-quarters of a nationally representative sample of 3164 women aged 18 and over disagree with the use of genetic test results to set insurance premiums."
In response to the understandable concerns of the general public, the industry and government agreed in 2001 to a five-year moratorium on the use of personal genetic data. This stated that genetic tests could only be used by companies when they have been authorised by the government's Genetics and Insurance Committee and only then for policies valued at more than £500,000 for life insurance, £300,000 for critical illness cover, and paying annual benefits of more than £30,000 for income protection.
More than 97% of policies issued in 2004 were below these limits and to date the only test approved by the GAIC is for life insurance relating to Huntington's Disease.
Then, in March this year, the industry agreed with the government to an extension of the existing moratorium until November 2011, with an interim review set for 2008. Bearing in mind that the risk insurers run by not being able to use predictive genetic test information is one of adverse selection - where people with undisclosed positive test results could decide to buy high levels of cover at a rate not reflective of the risk they present - why did insurers agree?
After all, as Debbie Akers, chief underwriter at Friends Provident and member of the Association of British Insurers' genetics committee, points out: "The issue for us is that when entering a contract of insurance it is important to have shared knowledge - what a customer knows, we are entitled to know. Once a customer is put into a position where they know more, there is a risk that this will influence their behaviour and disturb the balance within the model."
The reason insurers were comfortable extending the existing agreement is that the number of people currently undergoing genetic testing remains low. This means the potential for the number of policies affected by non-disclosure is minimal, as is the potential for adverse selection.
So what level would the test numbers need to reach for insurers to be genuinely concerned? "While this is not an actuarial answer, my gut feeling is that if the current numbers doubled, it would not present a crisis," says Ms Akers. "But if the numbers increased tenfold, I think, as insurers, we would have to think about it again.
"NHS testing has demonstrated that the numbers are sufficiently low for us not to be concerned. Now that we have established this information is available we hope to get updated figures, which is a step forward."
According to the Department of Health, for example, 4635 tests were carried out in 2004 on BRCA1 and 2 genes - the so-called 'breast cancer genes'.
Around 1000 of these were predictive genetic tests on women with a family history of genetic breast or ovarian cancer and 45% to 50% were positive.
The other BRCA1 and 2 tests were carried out on women who have either had or currently have cancer to see if they carried the faulty gene.
Dr Mike O'Donnell, chief medical officer at Unum Provident, takes a similar view about test numbers, stating: "The level of test taking would certainly have to be many times higher than the current number for insurers to be concerned." He adds that the scale of this issue now, compared to the threat posed to underwriters by the "epidemic of obesity", is negligible.
This is not to say that insurers are failing to monitor the situation going forward and Nick Kirwan, marketing director, protection, for Scottish Widows and chair of the ABI's CI working party, urges the industry to keep a close eye on developments: "I hope we will focus our efforts on the review date in 2008, rather than 2011. Negotiations, discussions and agreements in this area are very complex and emotive for consumers and politicians alike, so if we leave these to the last minute it will be too late.
"What we are concerned about is the wider implications long term; for example, there may come a time when you can walk into Boots, lick a slide and receive a list of your genetic predispositions to illnesses.
"At that point, customer access to information that is not shared with insurers will distort the pooling of risk and if we don't have the door open to investigate, the industry will be exposed for the long term."
So while he does not believe testing would reach an alarming level between now and the 2008 review or even the end of the moratorium, he feels it is essential to retain the possibility of using such information in the future. "What we would not want to do is lose the right to underwrite any kind of genetic information - it would be incredibly hard to win that back in future."
He adds: "There have been surveys that suggest adverse selection would be a problem, with those with genetic predispositions inclined to buy more cover but is it a meaningful amount that the industry needs to be concerned about?"
This will continue to be a difficult question to answer as insurers are not only prohibited from using results from predictive genetic tests but from collecting the information in the first place. "My concern at the moment is that if we are not told of testing results we will not know how much underwriting is going on at a much higher risk," says Ms Akers.
"We have no way of knowing if adverse selection is taking place and it would be nice to be able to collect such data even if we couldn't use it. From a technical point of view, this information would be very helpful."
Although protection insurers are prohibited from using genetic information, they can use details of family history to determine the potential risk that someone poses to them. So does the general public also have an issue with this type of information being used? "From Breakthrough's survey of women with either a family history or personal experience of breast cancer, most people disagree with the use of family history for setting insurance premiums, with some feeling family history is not an accurate predictor of risk," says a spokeswoman for Breakthrough.
Insurers themselves, however, report few problems in asking for such information. "I have never encountered any problems but it is an important right to question whether family history is less accurate," says Dr O'Donnell.
"For example, someone may be denied cover on the basis of family history but may not be if they had a genetic test."
Much of the reason genetic test results are deemed unacceptable is based on perception rather than reality. "As soon as you say the word genetics, it conjures up completely illogical and irrational pictures in people's minds," says Mr Kirwan. He is also concerned about current misunderstandings relating to the potential use of genetic information, with many people believing insurers will one day be able to demand customers take tests before applications can go ahead.
"This is something insurers will never do - we are only interested in having access to the same information as the customer. If they are none the wiser, there is no issue." And he stresses why it is essential to retain the current use of family history. "If we were to lose the right to use family history, this would have an enormous impact immediately and it is difficult to know how CI and other protection policies would survive that and be viable."
Another factor to consider when reviewing the right and relevance to use genetic data is the extent to which the development of diseases is actually tied to predisposition versus environmental factors. After all, if predisposition is less relevant, why would it be essential for insurers to have access to genetic test results?
Genetics v environment
"There is a broad spectrum," explains Ms Akers. "Many diseases have an element of both with Huntington's Disease at one extreme." This is because a positive test result for Huntington's Disease means that the person concerned will develop the disease - it is only a question of the age of onset - and there is no treatment available or potential cure.
"Many diseases may have an element of predisposition but are mainly environmental, such as lung cancer. Most breast cancer does not have a strong genetic component - something like 10% of cases report a notable family history.
It is true, therefore, to say that, overall, genetics is not usually significant, to the extent of our current understanding, among those who actually have the disease. For those who are not yet diagnosed but have a strong family history or mutation, however, the extra risk can indeed be significant but even then not 100% certain."
The importance of factors other than genetic make-up is also emphasised by Breakthrough. "All breast cancers, even in families with a strong history of the disease, are influenced by lifestyle and environmental factors.
Around 5% of all breast cancers occur in women with a strong genetic susceptibility to the disease."
Is the insurance industry preparing to submit other tests for approval?
"It is likely the GAIC will receive a submission from us for CI related to Huntington's Disease," says Richard Walsh, head of health at the ABI, "and probably for IP as well. The two other core ones are for breast cancer - potentially submitting tests for life, CI and IP."
He explains, however, that before insurers submit anything else there will be a period of discussion around actuarial modelling and methodology.
"We would much rather get any issues resolved first because we would not want to discover a material problem later on. We would never submit a test that was not accurate and we will also only submit tests when they are part of standard clinical practice for affected people."
Come 2011 and the end of the moratorium, what would insurers like to see happening?
"I would like to see a rational debate ensue that is not emotional, one that is based on fact rather than science fiction," says Dr O'Donnell.
Ms Akers adds: "By 2011 I hope that the whole subject will be less emotive and predictive genetics tests will simply be viewed as another available test. I believe this is they way doctors are increasingly seeing the issue and I hope the general perception will come along that way too. We just want to establish equality in underwriting - if people present a higher risk it is only fair that they pay for that."
Unless there is a sea change in public perception about insurer use of genetic test information, the industry will still face a significant barrier to the use of genetic test results in six years' time. "With the information currently available, Breakthrough would prefer predictive tests remain prohibited for insurer use," says the charity's spokeswoman. "For women with a family history of breast cancer, choosing to take a genetic test is a difficult enough decision without the fear that insurance companies may use this information against them."
Genetic testing complaints process - developments
Richard Walsh, head of health at the Association of British Insurers, explains: "The situation at the moment is that if someone complains they do so initially to the company, then there are two options. If it is an issue about claims or policy review, people can go to the Financial Ombudsman Service; if the problem is at the application stage, that is outside the jurisdiction of the Ombudsman. In the first instance, the person would be directed to the ABI. If they are unable to achieve satisfaction with us they go to the independent government committee. From there a case can proceed to a legally qualified tribunal that has the power to fine the company."
Mr Walsh stresses that no case has ever proceeded to this point. "We have received some complaints but they are very few, which reflects the stringent compliance process. All cases have been resolved by the ABI and only one has gone to the Genetics and Insurance Committee, which concerned family history. Although this was arguably outside the GAIC's remit, it was resolved and all parties were happy with the decision."
All these routes to redress are also free to the individual: "At the ABI we fund our part of the complaints system and the GAIC does so similarly. If a case were ever to go to the independent tribunal, the ABI would pay. We are committed to making this process more impartial from the word go - although complaints would still go to the company initially. However, we are looking at alternatives once a case goes beyond that stage and this will be part of the consultation process for the new code of best practice, which will come out in a few months' time. We are looking in broad terms to make the process transparently independent of ourselves at the ABI and possibly of government too as we do not feel this role sits well with a government committee either."
So who would fund the new complaints system if it was independent of the ABI and GAIC? "The ABI would still fund the process - whatever happens we would never move to a situation where the complainant had to fund it themselves."
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