Westminster Hall
Thursday 25 October 2001
[Sir Michael Lord in the Chair]
Genetics and Insurance
[Relevant documents: Fifth Report from the Science and Technology Committee, Session 2000-01, HC 174, and the Government's response thereto, Cm 5286.]
Motion made, and Question proposed, That the sitting be now adjourned.—[Mr. Stringer.]
2.30 pm
Lynne Jones (Birmingham, Selly Oak): Today's debate provides an opportunity to promote the forward thinking of a Select Committee that has not received the attention that it deserves—or that, at least, is my view, and I always think objectively. The report that we are discussing was published in April and was the Committee's fifth report of the previous Session. It considers the use that insurers make of the results of genetic tests in assessing risks and setting premiums. The report is short, but it picks up some of the important recommendations made following a year-long inquiry by the Conservative-dominated predecessor Committee. Those recommendations were, sadly, addressed inadequately by the then Government.
In many ways, that 1995 report was ahead of its time and must not be lost only because it is more than six years old. It is a very good read.
Mr. Ian Taylor (Esher and Walton): The hon. Lady, with her normal courtesy and charm, has just referred to me, as I was the Minister with responsibility for science and technology in the Conservative Government. We took the Select Committee seriously, although we did not agree absolutely with what it said.
Lynne Jones: The hon. Gentleman is right. Eventually, after much persuasion, he accepted one of our major recommendations but, sadly, not the recommendation related to today's debate.
The purpose of the 1995 report was to encourage action that would ensure that society receives the benefits deriving from genetic research while anticipating and controlling possible adverse effects. Issues raised in that report, including those on the subject of genetics and insurance, are only now being adequately recognised and addressed.
As the most long-in-the-tooth member of the Select Committee that produced the 1995 report, I have the honour of introducing the debate, because our Chairman, Michael Clark, the former hon. Member for Rayleigh, did not seek re-election in June. It is a tribute to his skill in chairing the Committee, which is not always well behaved, that we have produced so many effective and influential reports over the past four years.
I shall begin by saying a few words about the science of genetics before moving on to consider the Committee's conclusions and recommendations and the Government's most welcome response.
All genes in the human body are expected to be sequenced in the near future. Genetic tests have already been developed to identify individuals or groups of people who might develop particular disabilities or diseases or have a genetic predisposition for such conditions. Although at present they are few in number and relate to diseases associated with a defect in a single gene, gene sequencing is becoming so rapid that it is expected that genetic tests, with some predictive value for a wide variety of disorders, are likely to become available over the next decade. It is even conceivable that an individual's entire gene sequence will be able to be used as a diagnostic tool. Increasing knowledge of the human genome and genetic variations is being used to discover molecular processes involved in common diseases, such as diabetes, osteoporosis, Alzheimer's and heart disease—and, of course, cancer, which was the subject of another excellent Committee report.
Among the expected benefits are better diagnosis and treatment, including drugs designed precisely to fit the molecules implicated in disease, and new gene therapies. Genetic science, including cloning techniques, holds the hope of new therapies for previously untreatable diseases. The economic benefits of DNA research to Governments and insurers are highly significant, as the management of untreatable or inadequately treated diseases soaks up enormous resources. Prevention, better treatments or even cures could stem major drains on budgets. Increasing knowledge of the genetic basis of disease may be the best chance of halting spiralling health and nursing care costs.
It can easily be envisaged that extensive genetic testing and screening, especially where results are misunderstood, could do great harm. People may be denied health or life insurance or be expected to pay unaffordable premiums. Employers may be reluctant to take on those identified as having a genetic "defect". I should add that abnormal genes may confer beneficial traits. There are fears of the creation of a genetic underclass that faces widespread discrimination. People's choice of a partner might be affected, pressure could be put on parents to terminate pregnancies and there might be less tolerance of people with disabilities. There is a real danger that people would decline to take genetic testing. Such reluctance would not only deny people the benefits of knowing the results, but could hinder genetic research that will be needed if genetic knowledge is fully to benefit society.
Genetic testing does not increase the rate at which disorders appear. On the contrary, if testing leads to prevention or treatment the opposite is likely to be the case. The insurance industry should therefore have little to fear from the increased knowledge that genetic testing provides, and ultimately should have much to gain if it leads to a reduction in susceptibility to diseases. If people who have potential genetic problems were deterred from taking tests or seeking clinical advice, possible health benefits would not be realised.
Our Committee was concerned about the impact of demands by insurers for genetic tests results, not only on people's health, but on research programmes if people were discouraged from taking tests for such programmes. Our predecessor Committee proposed that the individual's right to privacy should prevail in relation to genetic tests. Likewise, we acknowledged insurers' main concern about the risks of adverse
selection, which was that people whose tests revealed susceptibility to genetic diseases would buy expensive policies to exploit the system. We felt that it should be possible to find ways to regulate the use of genetic information and insurance that protected the interests of society in enabling as many people as possible to obtain insurance, and protected the insurance companies.
Dr. Evan Harris (Oxford, West and Abingdon): In the Committee's investigations, did it find any evidence—academic or experiential, perhaps from the United States—of widespread use of adverse selection by patients who had received disappointing diagnoses? Is there any evidence that people rush out and buy insurance policies, or does evidence suggest that it hardly happens, if at all? Is there no evidence either way?
Lynne Jones : We found no evidence, although it is theoretically possible that people could react in that way. As I shall explain, few could take advantage of such knowledge.
I return to the protection of insurance companies. The Committee had previously suggested, as an example, the introduction of an exemption from a moratorium on the use of genetic tests for high-value policies. Our 1995 report suggested that possible model, and recommended that the insurance industry should be given a year to propose its own solution or face legislation. I am sorry if it will upset the hon. Member for Esher and Walton (Mr. Taylor) to hear that the then Government, to their discredit, did not accept that recommendation, but placed their faith in the insurance industry doing the decent thing. The resulting Association of British Insurers' code of practice was weak and ineffective, having clearly been formulated on the basis of the least common denominator acceptable to all its members.
Against that background, the Committee decided to revisit the issue, pointing out that the unwillingness of the previous Government to become involved in the subject had contributed to the atmosphere of confusion and ignorance that pervaded the use of genetic test results.
Mr. Oliver Heald (North-East Hertfordshire): When Professor Martin Bobrow was giving evidence to the Committee about the experience with HIV and AIDS, the hon. Lady mentioned the many sufferers who had taken out large insurance policies without disclosing their HIV status, and asked him whether the potential costs for insurance and the creation of a level playing field for insuring a client justified the insurers' demands for access to that information. Professor Bobrow said that it was a question of balance, but that insurance companies are entitled to be protected against being taken for a ride. Does the hon. Lady wish to say any more about that knowledge? I come new to the subject, but recognise that there are some concerns.
Lynne Jones : It is right that we should put such points to people like Professor Bobrow. However, the Committee acknowledged that there was a theoretical risk of adverse selection and formulated ways of trying to address such concerns. Genetic testing is not the same
as HIV—although now that people with the virus do not necessarily go on to develop full-blown AIDS for some time, the situation in each case has become similar.The Committee also acknowledged insurers' concerns about the risk of adverse selection and accepted, as a principle, that commercial insurance companies should have access to the same information as applicants, where it is relevant and reliable. Crucially, it added the caveat that that should apply only if there were no adverse consequences for society as a whole—for example, discouraging people from taking tests. In view of the very small numbers involved, the Committee suggested that insurers could afford to ignore genetic test results for the foreseeable future.
Cases involving genetic test results comprise less than one tenth of 1 per cent. of all insurance business, and the Committee questioned the predictive significance of positive test results and their actuarial relevance at such an early stage in the development of genetic science. Adult-onset single gene disorders are so rare that few people would know that they might suffer from an inherited disease within a normal lifespan. As Professor Bobrow pointed out in his evidence to the Committee, genetic tests might be good at distinguishing those who carry a particular gene from those who do not, but they are less accurate at identifying those who will succumb to the disease.
In view of that, the Committee strongly criticised the industry for acting in too precipitate a manner and for being too eager to establish its right to use the results of genetic tests, regardless of their relevance or reliability. However, it praised those enlightened insurance companies which had voluntarily introduced a no-disclosure policy for genetic test results. They deserve a mention—Co-operative Insurance Society Ltd., Standard Life Assurance Company and Virgin Direct Personal Finance Service Ltd.
The Committee also criticised insurance companies for failing to clarify their policies on the use of test results. Many gave the impression that they either did not want people to know what they were doing or, even worse, did not understand the principles behind their own policies. Several companies, and the ABI, changed their policies during the course of the inquiry because questioning had exposed their inadequacies. The Committee called on each insurance company to make a clear statement of its policy and on the industry to publish more actuarial data supporting the changes insurers make to insurance premiums on the basis of positive test results.
The Committee called for a voluntary moratorium on the use of all positive genetic test results for at least the next two years to give time for more research on the actuarial and scientific relevance of genetic test results, and the possible consequences of their use for research and for health care. If the insurers were unable or unwilling to enforce the moratorium, it recommended that the Government enforce it by legislation, although it was not in favour of legislation denying insurers access to all genetic test results, as has been enacted in some overseas countries. Tests can prove that people do not have a specific genetic defect, and it is in the interests of those with a family history of genetic illness that insurers should take into account negative tests.
The Committee also examined the role of the Genetics and Insurance Committee, which is the regulatory committee that the Government set up to evaluate the scientific and actuarial relevance of genetic tests proposed by the insurance industry. We called for the committee's procedures and membership to be reformed. Specifically, we said that it was an unacceptable conflict of interest for a geneticist nominated by the ABI to judge his own test application as a member of GAIC. We recommended that the reformed committee re-examine the decision to approve the use of the Huntington's genetic test by insurers.
We also considered the role of the Human Genetics Commission. We recommended that it should continue to monitor the use of genetic tests by insurers and the consequences of their actions in the widest context. We also said that it should continue to advise the Government on developments and be given extra resources if that meant extra work. The HGC responded positively to our report. Its interim recommendations were published in May and the comments that it made to inform the Government's response were published in June. The reply from the Department of Health was published on 23 October. It was late in coming, and arrived just in time for this debate; nevertheless, it was worth waiting for. It largely accepted the Committee's recommendations.
Published at the same time was the ABI announcement that the industry had agreed to a five-year moratorium on the use of genetic test results for life insurance up to £500,000, and critical illness insurance, long-term care insurance and income protection insurance up to £300,000, with a review of those financial limits after five years.
I congratulate the Government on persuading the ABI to extend the two-year moratorium and the £100,000 limit for life insurance, which it announced in May, no doubt as a gesture of good will. Those developments were brought about because of the Government's stance, which my right hon. Friend the Secretary of State for Health outlined just after the publication of the Committee's report. He said that he would, if necessary, consider legislation to prevent the inappropriate use of genetic information for insurance purposes. That approach was first recommended by our predecessor Committee in 1995 and finally results have been achieved.
Beyond the £500,000 and £300,000 limits, the industry may use positive genetic test results only where approved by GAIC. The Government agree with the Committee that insurance companies were wrong to use the results of genetic tests to load premiums before those tests were approved by GAIC.
I am sure I speak for my former fellow Committee members when I welcome the Government's acceptance that an independent mechanism is needed to enforce the moratorium and the proposal for an independent complaints system. GAIC's remit is to be extended so that it can monitor compliance with the moratorium and with the ABI's new code of practice. It will be asked to report annually to Ministers on that.
We also welcome the publication of the ABI's first compliance report and its agreement to consult outside bodies on its revised code of practice. The code should be introduced swiftly, and those outside bodies should
include patients' groups. The code must make it clear that insurers must not use results that are taken from genetic tests for research purposes. The Government agree that insurers should take negative test results into account where a geneticist confirms their relevance.We welcome the Government's agreement to review and extend the membership of GAIC and their acceptance that there was a perceived conflict of interest in having the ABI genetics adviser on the committee. We make no criticism of Professor Raeburn's personal conduct, but we welcome his decision to step down.
The Government have acknowledged that the reformed GAIC might need to revisit the committee's decision to approve the use of the Huntington's disease test. They have also undertaken to encourage further actuarial research to evaluate the effects of genetic conditions on insurance risk, and have made it clear that such research should be published and be subject to peer review—quite right too. Also welcome is the Government's acknowledgement of the concern that some of those who carry an inherited disorder may find insurance difficult to obtain because of their family history, and the proposal to consult genetic support groups and the industry to examine what can be done to help such people. I hope that when the Minister replies, she will be able to give us an idea of the likely time scale in which this is to be carried out.
As I draw my remarks to an end, it would be uncharacteristic if I did not make one criticism. However, it is a small one. The Government say that they will keep under review the adequacy of GAIC's and HGC's resources. Such an expression is often a useful formulation for inaction. Evidence to the Committee suggested that such bodies were already overstretched. For example, GAIC has apparently been dependent upon the good will of actuaries nominated by the Faculty and Institute of Actuaries to provide independent actuarial reviews free of charge, instead of paying the normal rate. The HGC's June statement says that it foresees a need to fund external expert advice, surveys and modelling, and further public consultative meetings. I hope that the Government will respond positively to requests from those bodies for additional resources.
I am pleased to have been able to follow through to a satisfactory conclusion, if a belated one, the recommendations to which I contributed in 1995. I will not be a member of the Science and Technology Select Committee when it is reconstituted, which I hope will be very soon, but I have been most honoured to be able to participate in the work of the Committee over the past nine years. I thank other colleagues for their contributions and wish the new Committee well.
Finally, I apologise if I have to leave before the end of the debate, and particularly if I am not able to return to hear the Minister's response. It is expected that there will be a debate on social security regulations some time after 4 pm, in which I hope to participate. I will hot-foot it back as soon as I can, but if I do not make it for the Minister's response or for the contributions of hon. Members who speak for Opposition parties, I promise that I will read the Hansard record avidly.
2.52 pm
Mr. Ian Taylor (Esher and Walton): I am delighted to follow the hon. Member for Birmingham, Selly Oak (Lynne Jones). I, too, have to offer my apologies. I pushed a meeting back this afternoon to enable me to participate in the debate, but I cannot push it entirely back, so I will have to leave before the end of the debate. I find myself, as always, in awe of the hon. Lady. Her ability constructively to criticise her Government leaves us full of admiration. On this occasion she also provided an admirable summary of the work of the Select Committee, and I am delighted that we are debating this matter, which is of broad public significance and in which there is much public interest. A debate in this Chamber can at least give the matter an airing.
As I said in an earlier intervention, I was, in a long ago age, pre-1997, the Minister with responsibility for science and technology. I remember dealing with some of these matters with the predecessor Committee. The issues are complex, and as the then Minister I had to try to balance the principles behind the concept of insurance with an important series of rapidly emerging scientific developments in the area of genetics. I had also to attempt to anticipate how that area would continue to develop.
In the end, we found a roughly amicable solution, with one or two false starts in my relationship with the Select Committee. It is significant that the Human Genetics Advisory Commission, which I had been involved in setting up, considered this issue at its first meeting. Indeed, its first report was on this issue. Its successor committee, the Human Genetics Commission, which has a slightly adapted remit, has also taken a close interest in what is happening and has recently reported its views of the matter.
The report was one of the series that we were considering in terms of advice to the Government. The conclusions that we drew are significant, because they attempted to be constructive in relation to an important industry, which provides assurance to people by giving them insurance, and its needs, and the way that science could raise questions about the public's confidence in the process of research and how that would affect their problems. The Alzheimer's Society summed up our report's conclusions rather well. It stated, first, that
- "people affected by genetic disorders are at risk of social exclusion and discrimination".
We found some evidence that that was a real worry. Furthermore,
- "the insurance industry failed to demonstrate a need for genetic information".
Again, I think that that was admitted in the evidence sessions, and subsequently.
I understand that four of the genetic tests have been included in a reassessment by the Association of British Insurers as being unreliable. It was clear during our session that the insurers were learning to come to terms with the science. Although one of our conclusions suggested that insurers appeared to have been more interested in establishing their future right to use genetic test results in assessing premiums than in the reliability or relevance of such tests, I took the view that a marker had been set to show the industry that it needed to be more careful about rushing ahead with tests that had not been fully verified. To do so could have produced a very negative effect on the way the industry was perceived.
The summary also stated that the Committee believed that
- "the insurance industry was able to withstand the risk of adverse selection."
That emerged in the evidence; certain companies made it very clear. A moratorium would help to prevent genetic discrimination and would encourage families to participate in genetic research without fear. That is an important facet of the Committee's aims.
There is a problem; it may appear that we are just bashing the insurance industry. However, that is not true. We wanted to give the public a wider confidence that the insurance industry was taking into account the progression of science and the existence of tests; that it was being asked to think carefully about its precipitate use of tests, which have subsequently been thought unreliable—even that for Huntingdon's disease may need to be reassessed by the reconformed GAIC—and that we understood that the principle of insurance slightly conflicted with the concept of a genetic disorder, because genetics can be used to anticipate the likelihood of developing a disease, raising the question of what the insurance industry should do to take account of that. Inherited genetic disorders might also need to be considered. The issues are complex and I do not have time to go into them now, but we discussed them at length.
The HGC's commentary brought out a point that concerned many of us. It stated:
- "It is our impression that the main principle underpinning private insurance contracts— 'utmost good faith'—bears more heavily on the applicant than on the insurer."
Much evidence showed that the insurance industry was aware that a degree of transparency would be needed in the new areas in which science was creating an impact. I am delighted that that is beginning to be apparent in the statement that we have just received from the ABI.
Genetic tests are important and there is no doubt that we must develop them, not necessarily for immediate adaptation by the insurance industry, but to try to understand how we can use genetics to improve the quality of human life and to lessen disease. Several members of the Committee went to the Sanger centre in Cambridge, and we were impressed by the progress being made in genomics and by the scientists' insistence that they needed volunteers to take tests. It was crucial to their ability to progress with the science of genetics that people, and of course families—because they are important to the understanding of the subject—should come forward. Any barrier to their doing that, in the form of the thought that something that might be discovered about them would prevent them from obtaining insurance, would slow down genetics research and cause a great deal of concern. That has not only been recognised by the ABI. It has been mentioned in many of the other documents that we have. We must assist in research excellence if we are to make real progress.
The ABI code has now been published. If problems arise because certain companies do not observe it in detail, it will still allow ministerial comment to be made. However, I certainly welcome it. I know that my views are not shared by all members of the Committee, but I believe that the industry finding a solution for itself would be better than the Government trying to regulate. I hope that the Minister will not disagree with me—she is now experienced in her job—when I say that Governments are not always terribly good or timely at regulating. It would be much better if we could encourage the industry to regulate itself. If the ABI could be criticised, it would be because, until recently, it has been sluggish—but at least we have now got there.
Dr. Evan Harris : I am listening carefully to the hon. Gentleman. I invite him to compare regulation of the insurance industry with our experience under the Human Fertilisation and Embryology Act 1990. That Act has stood the test of time because, 10 or 11 years later, only a few parts of it may need to be tightened. In that sense, the then Government did a very good job by legislating and not leaving the industry, especially the private sector, to regulate itself in such an important and controversial area.
Mr. Taylor : The hon. Gentleman makes an interesting point. However, I think that the area that he mentioned, which includes embryology, is a good deal more sensitive and more difficult than that covered in our discussions with the ABI on insurance and genetics. If he reflects on it, I believe that he will follow the point. None the less, I do not disagree with him; not only was the 1990 Act very good, but we have recently been able to extend it to degenerative diseases and stem cell research. I pay personal tribute to him for his leadership role—I am sure that he did not intervene on me in order to be paid a compliment, but he deserves it—in explaining to a sceptical House why stem cell research was an important advance and why we should amend the 1990 Act in order to extend its provisions to degenerative diseases.
I shall be brief. I compliment the Association of British Insurers. I hope that it will police its own moratorium to ensure that there are no exceptions. I hope that it will do its best to stimulate research in genetics. I agree that it may not be appropriate that it should have its own person on the Genetic and Insurance Committee, however much he may be respected by the industry, but I commend it for taking early steps to include a scientist because that will lead to better understanding. That was something that I had encouraged.
My final plea is that if the ABI maintains the moratorium for five years, it must not be used simply a breathing space. Those five years need to be used to allow intense understanding of the problems, and of how research can be developed; a deeper understanding of the positive and negative implications of tests, and what tests could be carried out; and a much better and wider public understanding, so that people realise that being tested for genetic problems could extend their lives by enabling them to change their life styles. People likely to suffer a degenerative disease, be it heart disease or whatever, might be able to take action early enough to mitigate the disease and thereby extend the quality of their active lives.
I welcome the report. It has made a good contribution to the debate. I am delighted that it has received such a wide-ranging and clear response from other bodies and from the Government. I may not be here for the Minister's reply, but I shall read it avidly in hard print.
Mr. Nicholas Winterton (in the Chair): Before I call the next speaker, and perhaps to liven up proceedings a little, I note that three of those who hope to catch my eye have the title "Dr". I hope that during their opening remarks they might say whether they are doctors of medicine or philosophy, as that will help us to understand their presentation.
3.4 pm
Dr. Ian Gibson (Norwich, North): I am philosophical, Mr. Winterton.
I am pleased to welcome the report and the Government's acceptance of some of our requests; they have gone further than we asked in some instances.
I want to consider in more detail the genetic prediction and personal insurance issue. In principle, genetic testing may predict future health, and insurers have a prima facie interest in it. Whether it becomes an important instrument of insurance policy depends on whether the prediction of common disorders turns out to be quantitatively significant in insurance terms. It is too early to know how that will turn out. The genes that influence predisposition to common diseases are not proving easy to isolate, and it will be some years before a true picture emerges, despite the human genome project.
The relatively uncommon mutations that cause single gene disorders have been known for some time. However, many medical geneticists argue that because our knowledge, even of those, is incomplete, and because they are sufficiently uncommon not to constitute a significant economic issue for the insurance companies, the industry should not discriminate against those disorders, apart from limitations to protect themselves against fraud, as my hon. Friend the hon. Member for Birmingham, Selly Oak (Lynne Jones) said. Such a voluntary gesture would have allowed co-operative research between geneticists and the insurance industry and created mutual and public trust and confidence.
What were the scientific problems with the Association of British Insurers' list of seven diseases? The gene changes underlying those diseases are known and the laboratory tests are not in doubt; however, there has been little primary insurance research into those disorders. All information is gleaned from medical literature, which contains certain predictable biases when applied for the purpose of life insurance for which the studies were not designed.
The most serious manifestations of a condition are usually the easiest to diagnose. People studying selected series of cases for medical purposes over-represent serious manifestations of the disease, and find out about mild manifestations only much later. For example, the cystic fibrosis gene contains some mutations that cause male infertility. The seven diseases vary in their presentation, some individuals being much more severely affected than others, and the literature probably overstates the true average severity of the diseases caused by mutations in these genes.
The more serious manifestations are likely to lead to the most rapid course of the disease, so the medical studies will perhaps overestimate the probability of the early onset of diseases.
Mr. David Heath (Somerton and Frome): The hon. Gentleman is making an extremely important point in the context of the report. Does he believe, as I fear, that the five-year moratorium will not, unless there is significant prompting from Government, produce the sort of actuarial, social and socio-medical research into the impact of testing that is required to enable a sensible decision to be taken at the end of the five-year period? I have no doubt that the medical research will continue at a high level; the question is whether the correct research in terms of the social consequences is being commissioned and whether it will be completed within the appropriate time scale.
Dr. Gibson : The report has set up a new culture in the interaction between insurance companies and the scientific community. The matter is being taken seriously. Next week Professor Sandy Raeburn and I will be speaking about these issues at a meeting of the insurance organisation. Science and genetics cannot be studied without considering the social context in which they will be applied. There is a new spirit loose in the land and it will be our job, in a year or so, to ensure that the monitoring and the partnership work achieve the report's aim.
Diseases are often defined before treatments are developed. For several of these conditions forms of therapy may well make a difference in future. For example, renal transplants have transformed the outlook for polycystic kidney disease. I have seen little evidence that the industry has attempted to take account of treatment effects. Science and medicine are moving apace, and who knows how many more discoveries will effect new treatments in a year's time? The human genome certainly holds out that prospect.
Not all people with an abnormal gene get a disease. We all have abnormal genes; there is no perfect genome. Early genetic studies are often based on large families with many affected members and are biased towards over-representing those families in which the gene is particularly likely to lead to clinical disease. That is why they produce large families with many affected members.
Early genetic studies are therefore biased towards high penetrance. For example, the breast cancer genes were initially thought to confer a risk of developing the disease of more than 80 per cent. More recent estimates, however, lower that to 50 or 60 per cent. Who knows what will happen as more studies are conducted?
The Parkinson's Disease Society recently presented a document welcoming the report and the Government response, but said that genetics plays a limited role in most instances of Parkinson's disease and we should take a careful line on it.
The Alzheimer's Society says that there are predisposing genes in familial Alzheimer's disease, but has asked the ABI to withdraw its applications for genetic approval of familial early onset of Alzheimer's.
The societies are therefore suspicious too, and I am referring to diseases that are more likely to be offset by stem cell research than by genetics at this stage.
Mr. Heald : Is the hon. Gentleman saying that to take a family history, as insurers do, and base a decision on it is a more robust methodology than to take into account any genetic tests that happen to exist?
Dr. Gibson : When someone asks for an insurance policy, they are asked how their parents died. I believe, as do others, that that is a pretty good indicator of what they will suffer from, without any high-falutin' genetics. That method has been good enough until now, and has created few problems of which I am aware. It will suffice while the genetics and other actuarial evidence are assessed.
Lynne Jones : Will my hon. Friend accept that insurance companies should be more upfront about the actuarial information on which they load premiums where people have a family history?
Dr. Gibson : Yes, I am sure that insurance companies will listen to our requests and present the data. I come from an insurance city, which is now almost dominated by Norwich Union and Virgin Direct. All the feedback that I have received from such companies suggests that they take the matter seriously, and they have said that the actuarial evidence will come upfront. Again, the Select Committee or other organisations will look into the report a year from now and ensure that that is being applied.
Although not true for the relatively uncommon diseases, it is likely to be true in the more complex diseases that a gene that confers an increased risk of one thing may also confer a decreased risk of something else, as my hon. Friend the Member for Birmingham, Selly Oak said. A possible example is the gene variant associated with an increased risk of Alzheimer's, which is suggested to confer a decreased risk of heart disease. The jury is still out, and the evidence is being assessed.
Medical studies based on collections of cases will often define the harmful effects of genes long before their beneficial effects are discovered. People will know that there is a good case for linking malaria and sickle cell anaemia: someone can have sickle cell anaemia and be resistant to malarial parasites. From a life insurance viewpoint, the issue is not any one disease, but the total probability of all diseases within a set period. That must be part of the equation, but it has not been up to now.
All these biases in the medical data will tend to exaggerate the seriousness of a gene abnormality in an insurer's view. More sophisticated research and analysis are required to provide a fair picture of genetic effects for insurance purposes. There is little sign that the insurance industry intends undertaking such research or withholding its judgments until better data are available.
We await with impatience its response to the debate and the reports from the Human Genetics Commission, the disease societies and so on. All the problems will be much more severe when considering the predisposition to common, rather than rare, diseases. By attempting to ignore the problems and adopting a rigid approach, the
insurance industry has lost the confidence of many professionals and the public in terms of its capability appropriately to handle scientific information. The hope is that it will take up the cudgels and respond to some of the problems.It is also essential that during the moratorium we have not the examination of the science and actuarial evidence, but monitoring of what insurance companies are doing. As my hon. Friend the Member for Birmingham, Selly Oak pointed out, in 1995 there was a tendency to think that there was a solution to the problem. That was clearly ignored and, despite the ABI guidelines, people moved at different paces for reasons that are not clear.
I welcome the recent comment in the British Medical Journal by my right hon. Friend the Secretary of State for Health that the Government are willing to outlaw the use of genetic tests by insurance companies if the Human Genetics Commission recommends such a step. It has now done so, and we should run with that. However, we must ensure, over the next five years, that the research on genetics and the work done by the insurance industry do not cause the creation of an underclass of people who are frightened to use scientific information because they might be penalised by faulty data.
Mr. Nicholas Winterton (in the Chair): It is not often that the occupant of the Chair admits an error, but I said earlier that three Members with the title of "Dr." were seeking to catch my eye, whereas there were in fact five. The two hon. Members whom I did not see, sitting on the left of the Chamber, are medical doctors. I call one of them now.
3.7 pm
Dr. Andrew Murrison (Westbury): Thank you, Mr. Winterton.
The strengthened moratorium of the Association of British Insurers on the use of genetic tests by the insurance industry is very welcome. It follows the excellent report of the Science and Technology Committee on genetics and insurance and I congratulate those who contributed to it. The science of predicting who will get what disease and when is insufficiently mature for companies to achieve any actuarial precision on the basis of genetic testing. That is not of great moment to the bulk of the insurance industry, given that it is principally concerned with risk that is based on population. The business of the House is very much to do with individuals; that is why we are here. The rare, relatively clear-cut, genetically determined Huntington's disease was rightly identified as the progenitor of possible genetic testing for the future. However, even if insurance companies were inundated with people aware of their genotype and therefore their likelihood of manifesting the disease—so-called adverse selection—the effect on insurance companies would be small, because the fact is that most of us will eventually succumb to degenerative disease.
Early predictions that we may be able readily to determine the medical misfortunes to which we are predisposed have been overdone. The likelihood is that mortality is determined by a cocktail of environment, genetics and sheer bad luck in a way that may never be
defined precisely. As we have heard, genotypes may paradoxically give protection for some diseases while predisposing for others. Our first concern must be to protect people from explicit and implicit compunction in genetic testing. Genetic testing raises a raft of ethical and practical difficulties, with implications not only for the index case, but for relatives and even those who suppose themselves to be relatives. Our genes do not exist in isolation and we have to recognise that throwing light on them may have unforeseen implications for the welfare of third parties.Insurance and financial products so pervade our lives as to be regarded a necessity of modern living. That is all the more so as we seek to encourage personal provision. Given that we are endorsing such a shift, we have a duty not to encourage testing if it might exclude individuals from participation. I well remember the difficulty that testing for HIV caused in the 1980s and the covert means by which worried people procured results to prevent the possibility of a positive test, or even the fact that they had been tested, being recorded in medical documents and subsequently causing difficulty in obtaining financial services and products. There are parallels here.
Although it does not affect the vast majority of people, I am concerned that permitting the use of tests at all—albeit under the direction of an enhanced Genetics and Insurance Committee—for high-value policies tacitly accepts that genetic tests are useful and reasonable. I find that to be intellectually unsatisfactory, and I hope that the Minister will comment.
On Tuesday, the House discussed breast cancer, and hon. Members raised the issue of the evidence base for screening. We must ensure that a thin evidence base does not disadvantage individuals, and I believe that the revised recommendations of the ABI largely achieve that. In five years' time, the science will be more mature, but it may well be that we move towards simply accepting that adverse selection will operate to the disadvantage of those of us with the genetic harbingers of misfortune. Such a view will probably require something more than the ABI moratorium.
3.9 pm
Dr. Brian Iddon (Bolton, South-East): In response to your earlier question, Mr. Winterton, I am a double doctor. I have PhDs in philosophy and in science but, in fact, I am a chemist. Therefore, you could increase your figure to six.
I am pleased to take part in the debate. Insurance is a necessity of life for many people; for example, in obtaining a mortgage or credit card facility and, for some, private health care. Those who are socially excluded are usually unable to acquire insurance, and there is a risk that the use of genetic test results may increase the number of socially excluded people.
The Co-operative Insurance Society told the Science and Technology Committee that
- "the British public is under-insured and under-protected."
Therefore, it is important that we do not make the situation worse by creating a genetic underclass. For that group of people, insurance would be too expensive or, even worse, unobtainable, because of their genetic fingerprint.
There is a fear, perhaps unfounded, that demographic pressures—for example, an increasing elderly population—are rolling back state support for individuals in favour of a greater role for the financial services industry, including insurance-based products. In turn, that leads to cherry-picking, whereby the industry accepts the best risks but rejects others to be cared for by the state; in this case, the genetic underclass.
Apart from mutual insurance companies, the rest—public limited companies—are out to maximise profits for the benefit of their shareholders. As insurance premiums rise, more and more people opt out of insurance. The trick is to decrease premiums for an increasing majority of people and thereby attract the under or non-insured to buy more insurance products. Perhaps the insurance industry sees the use of genetic testing, with the exclusion of the higher risks, as a means of accomplishing that. If so, gone will be the concept of risk sharing, often referred to as mutuality by the industry—not to be confused, of course, with a mutual insurance company. Consequently, the industry will segment, with more emphasis on tailor-made insurance products. I would regret that because I believe strongly in the concept of risk sharing, whereby those in the lowest risk categories subsidise those in the highest risk categories. Wherever there is increased complexity in marketing, consumers find it harder to locate the right product at the right price. Although increased competition might lead initially to cheaper products, in the long term consumers would find it difficult to exert downward competitive pressure on insurers. If that happened, many consumers would find themselves either paying higher premiums or excluded from the market.
The insurance industry has acted precipitately and without necessity on genetic testing. That is why the Science and Technology Committee recommended in our fifth report, published in April this year, that
- "the best way forward for the Government and industry would be a voluntary moratorium on the use of all positive genetic test results by insurers for at least two years."
The insurance industry has argued that it will be financially disadvantaged if it is not allowed to use genetic test results and believes that those who have had a positive test result may seek more insurance cover as a result. That concept, which has already been mentioned, is adverse selection. The counter-argument is that the insurance industry has managed actuarially without genetic tests since its foundation.
The general public are not complimentary about the insurance industry. The use of genetic test results, particularly positive results to increase premiums, is also unpopular. In a MORI poll commissioned by the Human Genetics Commission, only 8 per cent. of respondents thought that genetic tests should be used to set insurance premiums, while 78 per cent. disagreed. Research for the Co-operative's social accountability programme has found considerable mistrust of the insurance industry among consumers, which it believes contributes greatly to the under-insurance of our fellow citizens.
In November 1998, the ABI, which represents about 400 insurance companies that provide about 97 per cent. of UK insurance business, published a list of 10 tests for
seven disease conditions that it regarded as sufficiently reliable to be used by the industry. However, the list was not readily available, not even for example as an appendix to its code of practice. There is some dispute about the reliability of the tests, as mentioned by my hon. Friend the Member for Norwich, North (Dr. Gibson). The only test that was validated, in October 2000 by the Government's Genetics and Insurance Committee, is for Huntington's chorea. However, GAIC is expected to publish soon its assessment of tests for hereditary Alzheimer's disease, and breast and ovarian cancer. Some insurance companies—for example, Norwich Union—appear to have been using genetic tests before their approval by GAIC.It is noteworthy that four of the 10 tests that the ABI strongly recommended are no longer considered, even by it, to be reliable. Insurers have given the test results a predictive significance that cannot be justified. As far as I know, only the three insurance companies that have already been mentioned use only negative genetic tests to lower insurance premiums. Other insurers take into account positive test results, presumably always to increase premiums.
Until recently, those applying for life insurance linked to a mortgage for £100,000 or less were not asked for results of any genetic tests that they may have had. Since the Select Committee report, that cut-off figure was increased in May 2001 to £300,000. I am pleased that, following discussions with the Government, the insurance industry this month announced a five-year moratorium on the use of genetic tests that will apply to life insurance policies of up to £500,000 and critical illness, long-term care insurance and income protection of up to £300,000 for each type of policy. For applications over those amounts, test results for Huntington's chorea will have to be disclosed. That announcement should be welcomed, but I hope that all 400 members of the ABI comply. According to the Alzheimer's Society, which carried out a survey in March 2000, the ABI code of practice on the use of genetic information has often been breached by its own members. Fortunately, it seems that public pressure has had some impact on the insurance industry.
Mutuality and the achievement of broad equity between persons of similar circumstances who are in an insured risk pool have always been used by the insurance industry to arrive at its premiums. Family history has always played an important role in arriving at premiums and certain factors—for example, when a non-smoker seeks life insurance or a security system is in place on a property for which insurance is being sought—have always been taken into account.
The use of family histories to arrive at insurance premiums can result in unnecessarily high premiums for many people. The use of negative genetic testing would benefit those affected. The Government have supported that point of view, which begs the question whether the moratorium on the use of genetic tests will apply to negative as well as positive test results. Apparently, it is to be left to the discretion of individual companies.
The seven conditions chosen by the ABI's genetic committee are all relatively rare. The Prudential dealt with only seven applications involving genetic test data in 2000. Norwich Union dealt with only 50 out of 150,000 applications for insurance in the same year and
the Co-operative Insurance Society a meagre 14 out of 460,000 applications in three years—a minuscule 0.003 per cent. of its business.Let us examine Huntington's chorea in more detail. An estimated 6,000 people in the UK have the condition, not all of whom are relevant for insurance purposes. The gene for this fatal condition has been cloned and a diagnostic test developed. However, the gene's presence in an individual does not indicate whether it will express itself in that person's lifetime or, if it does so, exactly when. Professor Bobrow told our Committee that he was unaware of any scientists who believed that the age of onset of the condition could be predicted with any accuracy.
Significant concerns have been raised about the procedures used by the GAIC to examine genetic tests that it is asked to approve, including the approved test for Huntington's chorea. The Wellcome Trust states:
- "The justification for their decision (in that case) was not subject to the rigours of a peer review such as that required for publication in a respected scientific journal".
The Select Committee thus recommended that GAIC re-examine its procedures for approving the use of genetic tests, and I understand that it is prepared to do so.
Nevertheless, traditionally, close relatives of a known sufferer of this highly heritable disease will have their insurance premiums substantially loaded—by as much as 300 per cent. according to the Huntington's Disease Association—owing to the perceived increased risk, based on family history and in the absence of a genetic test result. If the more accurate data derived from a positive genetic test were applied, the loading may prohibit insurance completely. Currently, only about 15 per cent. of those at risk from Huntington's chorea take a genetic test.
Through the network of regional genetic centres many people whose genetic diseases would otherwise escape attention can be diagnosed quickly and accurately, and receive treatment and advice to improve their quality of life. Those who have the gene associated with familial polyposis and who are at high risk of developing colorectal cancer can be kept under regular surveillance and, should polyps be detected in the large bowel, preventive measures can be taken.
Many in the field of clinical genetics are worried that the use of genetic test results by the insurance industry and possible discrimination against those who volunteer for the tests may deter people from seeking the available help and treatment for their disease condition. The CIS has recognised that possible conflict, which has apparently informed its policy on the use of test results in favour of its clients.
We need more research in this area. By comparing which disease, if any, volunteers contract and their genetic make-up, it is hoped that a much greater understanding of the role of the genetic component, as distinct from environmental factors, can be reached. Obviously, anything that might inhibit patients from volunteering for such clinical trials would be of great concern.
Fortunately, the insurers and the ABI have recognised the worry in that they state that they will not seek the results of such clinical trials for individual patients who might also be their customers. However, the Committee
considered that they should be more explicit in that connection—for example, by incorporating that principle in their code of practice.It would help, too, if the insurance industry contributed more of its considerable profits to research into the development of genetic tests to improve the health of our society and the impact of genetic tests in other areas, such as insurance. The genetics and insurance research centre at Heriot-Watt university is conducting research, funded by the industry, and that should help to clarify the link between genetic test results and insurance premiums. I have already referred to the research being carried out by the Co-operative social accountability programme.
I am sure that the debate will continue. As gene technology advances, it will have a greater impact on our thinking and on the behaviour of society and its servants. I am confident that we shall discuss the topic again in the not too distant future.
3.35 pm
Mr. Barry Gardiner (Brent, North): I wish first to make two matters clear. I am a chartered insurance practitioner and I qualified many years ago as an associate of the Chartered Insurance Institute. I derive no income from the insurance industry and, to that extent, while I hope that I have an informed interest, in no way do I have a partial or partisan interest in today's important debate.
I welcome the five-year moratorium on the use of genetic test results by insurers that was announced by the Association of British Insurers. We are living through a particularly dramatic period of change in our understanding of human genetics, which has far-reaching consequences for medicine, pathology and our predictive and diagnostic powers. That in turn has far-reaching social and public policy consequences, not least for life and critical illness insurance.
In the words of the fifth report of the Science and Technology Committee:
- "It is therefore becoming increasingly feasible for the identification of disease-associated and other genes to be available at the level of the hospital pathology laboratory, and, within the foreseeable future, also in the primary healthcare surgery."
The advance of science is linked fundamentally to the predictive power of its theses. Of course, it is to be hoped and celebrated that the principal application of such advances in genetic knowledge falls within our capacity to treat and ultimately cure or eradicate disease.
However, predictive power is also an essential element in the business of insurance and the actuarial basis on which that industry rests. Insurance is fundamentally about risk and the pooling or sharing of risk. It is not about public compensation for known and certain loss. That is why we cannot, for example, take out insurance against fire damage when a fire has already started. A body of English law has grown up around the issue of proximate cause, which I shall not rehearse now, but it is precisely the issue of causation and the fact that the preponderance of knowledge of such proximate causes is likely to be with the party seeking insurance that has given rise to the second essential foundation of insurance contracts.
To overcome the asymmetry of knowledge, the consolidating Act relating to insurance, the Marine Insurance Act 1906, lays down a fundamental duty of disclosure on the parties to an insurance contract. Classically, that means that insurance is "uberrimae fidei" or what section 17 of the Act describes as
- "a contract based upon the utmost good faith, and, if the utmost good faith be not observed by either party, the contract may be avoided by the other party."
- "Subject to the provisions of this section, the assured must disclose to the insurer, before the contract is concluded, every material circumstance which is known to the assured...Every circumstance is material which would influence the judgment of a prudent insurer in fixing the premium, or determining whether he will take the risk."
That 95-year-old legislation crystallises the contemporary problem that reliable genetic testing poses to public policy. Clearly, it is wrong that, as a result of a genetic test, somebody diagnosed with Huntington's chorea should take out life and critical illness insurance cover of almost £1 million that he would not have purchased otherwise.
Lynne Jones : I want to pick up my hon. Friend's point about somebody taking a genetic test and being diagnosed with that condition. Taking a genetic test does not diagnose a person with that condition; it only indicates that that person may be predisposed to it.
Mr. Gardiner : I accept my hon. Friend's correction, and I shall deal with that issue later. Over the next few years, however, there will be more and more reliable and accurate tests with greater and greater predictive power. We hope that that will occur, because we also hope that, in the field of medicine, we will be able to use such tests to eradicate disease. I am discussing the principles involved, not the vagaries of which tests may be more or less effective.
If somebody whose test proved positive for Huntington's chorea had to take out life or critical illness cover of almost £1 million that they would not have purchased otherwise, that would be wrong, because they would not be seeking to protect themselves and their family from the eventuality that something might happen. They would seek to gain a certain benefit from an event, albeit tragic, that they could predict with almost certain knowledge.
Mr. Tony McWalter (Hemel Hempstead): There seems to be confusion in my hon. Friend's mind. He believes that such tests will have ever-increasing predictive power and he wants that to happen because it will produce ever-increasing medical resources to combat that illness. However, the development of those medical resources will not confer predictive power, because the disease will be short-circuited and stopped in its train. Having a propensity to a disease is very different from having it.
Mr. Gardiner : I accept what my hon. Friend says. However, he must take this on board: until there is a
conclusive test that shows with certain predictive power a propensity to what is currently a fatal condition, it will be impossible to develop the counter to it.
Mr. Heald : When Professor Bobrow gave evidence to the Committee, he was asked about that. He said that it is well documented that, at one end of the Huntington's mutations, 3, 4 or 5 per cent. of the people who carry genes that are clearly abnormal by current definitions do not manifest the disease by the age of 70. He is therefore saying that about 95 per cent. do. In the case that he put forward, finding a propensity to Huntington's chorea would mean a substantial probability of onset by the age of 70.
Mr. Gardiner : If the hon. Gentleman allows me to continue, I shall tackle the issue that he and other hon. Members are raising.
In terms of the benefit secured at the expense of fellow policyholders, those fellow policyholders consider themselves to be engaged in a commercial contract of sharing risk, not a public policy scheme of compensating guaranteed loss. I have reached the point at which I can, I hope, address the remarks that have been made.
Dr. Evan Harris : Will the hon. Gentleman give way?
Mr. Gardiner : After I have commented on the matters that I wish to discuss.
Before I proceed, I must make it clear that I accept that arguments can be made concerning the validity and the predictive power of current individual genetic tests. The Genetics and Insurance Committee must be our standard on that. I shall use the test of Huntington's chorea because it has been pronounced the most reliable to date by GAIC. However, my argument rests on the assumption that valid and reliable genetic tests will be developed. That is why I seek to address general principles rather than the specifics of an individual test.
Dr. Harris : I agree with the hon. Gentleman. I do not accept the criticism made by several hon. Members that, in theory, a test that gives one increased risk—it can be called increased risk if the figures are 100 per cent. or 80 per cent.—could not be gamed with to raise one's insurance. I have always accepted in debates with the insurance industry that that happens, but is that practice, or the potential for it, so substantial that it outweighs the gains to be had from pooling the risk? The hon. Member for Bolton, South-East (Dr. Iddon) referred to that point.
Mr. Gardiner : I agree with the hon. Gentleman's point, and I will address it later.
The Government have correctly focused on social exclusion. That is a proper concern, and it has informed the report and the Government's response. The key concern is to prevent the development of an insurance underclass of people who are unable to participate in the everyday business of taking out a mortgage or protecting their family. That is the legitimate motivation for the inquiry and for the debate that must develop during the moratorium.
When my hon. Friend the Member for Birmingham, Selly Oak (Lynne Jones) opened the debate, she spoke of the problems that might arise for people faced with
expensive premiums and of the danger that people might choose to forego a medical test that they need for fear of the possible consequences in respect of their insurance status. With regard to the first matter, the problem already arises separately from any genetic test: in any application for critical illness, family history questions already affect premium rating. I declare an interest regarding that matter, as my family history has caused underwriters to rate me at a substantially higher risk than normal.It would be difficult to persuade a member of the public that, because they have a family history that might suggest increased risk of disease, they should pay a higher premium or be denied cover altogether, but that a standard rate of premium should apply to their neighbour, who has received a positive test that concludes that the disease will almost certainly develop. Those anomalies will assume greater importance in public debate if and when genetic tests become more numerous and accurate in their predictive power.
Lynne Jones : My hon. Friend seems to have misunderstood the Committee's recommendation. His argument does not apply, because someone who took a genetic test would still be subject to disclosure of family history. However, there is a separate argument regarding the openness with which the insurance industry discloses the actuarial data that it uses to load premiums.
Mr. Gardiner : My hon. Friend has misunderstood me for once. I am trying to point out that if someone with no family history took a test that had a positive outcome and was graded at the normal rate, it would be difficult to explain to someone with a family history showing only increased risk that they would receive a higher rating. That is the anomaly to which I am referring; it concerns a test that might be taken, not by someone with a family history, but by someone without one.
Lynne Jones : My understanding is that it is highly unlikely that someone who tested positively for the Huntington gene would not have a family history.
Mr. Gardiner : Again, I am not focusing on individual tests and the current state of technology and science. I am dealing with the principles. If we move towards circumstances in which tests have increasingly predictive power, those tests will be used in medicine to achieve diagnostic effect in the general population. What my hon. Friend says is no doubt correct, but I am trying to find out where technology may lead us and the principles that we should apply now because of the impact that they may have later.
Mr. Heath : I understand the hon. Gentleman's point, although I am not sure that I entirely agree, because he claims a diagnostic infallibility for testing that is not borne out by fact. Will he consider the other side of the coin?
A point was made earlier about people with a familial history of a particular condition who pay significantly higher premiums as a result of a test that shows, however, that they are genetically negative and cannot develop the disease in spite of that familial history. Does the hon. Gentleman agree that in such circumstances the
insurance company should immediately take that into account and that the additional premium should not be paid?
Mr. Gardiner : Yes. That seems even-handed. However, it is not right that the upside of an equation may be taken into account, but not the downside.
Mr. Heath : I am so sorry. The hon. Gentleman faces a lot of interventions because he knows about insurance and the rest of us know a little about medicine. There is a dialogue between the two, but they are not equivalent. One deals with increased risk, and the other with absence of risk. One relates to a potential for developing a condition, and the other to the absolute potential not to develop the condition, as that is all that the test can prove.
Mr. Gardiner : I hesitate to tread on medical ground, but I understand that if a person shows no genetic predisposition in particular tests that have not yet been approved as normative by GAIC, such as that for ovarian cancer, that would not mean that ovarian cancer could not develop. Again, therefore, I refer to principles.
I am trying to consider the fundamental principles involved and I am not limiting the debate to specific genetic tests such as that for Huntington's chorea. I referred to that test only because GAIC said that it is the most relevant and has the most predictive power. In future, other tests will have that predictive power.
Dr. Harris : I agree. The hon. Gentleman makes a fair point that there is perceived unfairness in not allowing a positive genetic test in the absence of a family history. Some conditions will have new mutations and will not involve a family history. Some people know that their parents are not their genetic parents, and other reasons may be involved. Unfairness might be perceived compared with people who have a family history but are not genetically tested. We must recognise that such unfairness exists. It is not an excuse for lack of genetic confidentiality, because there is something precious and special about a person's genetic information that does not relate to and is unique compared with the history of another person who happens to be in his family.
Mr. Gardiner : The hon. Gentleman makes his point extremely well.
The anomalies that I outlined will assume much greater importance in the public mind if and when genetic tests become more numerous and more accurate in their predictive power. The Human Genetics Commission survey on the future of genetic information showed that the vast majority of people believe that human genetic information could and should be used to understand diseases and identify criminals, but should not be used to set insurance premiums, as the hon. Member for Oxford, West and Abingdon (Dr. Harris) suggests. However, that might not long survive the reflection that information about road traffic accidents is used not only to improve road safety, but to ensure that an elderly lady driver in her Nissan Sunny does not pay the same premium as a 19-year-old man in his Ferrari.
I conclude by returning to social exclusion. The insurance industry has shown itself to be extremely capable of refining its products to meet real need. Insurance policies have always admitted policy exclusions. If a conclusive positive test were developed, an insurer could provide cover for all other critical illness risks at standard rates for the period of cover, but exclude that peril. That is not cherry-picking, as my hon. Friend the Member for Bolton, South-East said, because it is not an example in which the insurer would accept a lower but not a higher risk.
The insurer would accept a risk, but not a certainty. Insurers welcome high risk, because without it there would be no high premiums. The professional job of the actuary is to ensure that the contribution made by each policyholder to the pool of premiums reflects the proportion of risk that each person brings to the overall liability. If that is undermined, commercial insurance is undermined. Only Government underwriting from public policy could replace it.
Our Government should be careful before deciding to go down that route. We have a five-year moratorium, but there is no doubt that genetic testing will develop. The response of the Government and of industry to any development during that period must take fundamental cognisance of two principles, which lie at the heart of insurance and must remain there. First, one insures against risk, not certainty, and, secondly, there is utmost good faith between the parties concerned.
Mr. Nicholas Winterton (in the Chair): Before I call the hon. Member for Brighton, Kemptown (Dr. Turner), I tell hon. Members that I understand that there may be a vote in the House at 4 pm. If one occurs, I shall suspend the sitting for 15 minutes. I hope that all hon. Members will return, perhaps before 15 minutes have elapsed. We have injury time available and the sitting may continue beyond 5.30 pm in the event of a Division.
3.57 pm
Dr. Desmond Turner (Brighton, Kemptown): For your information, Mr. Winterton, I am the happy possessor of one modest PhD, with which I am quite content.
The debate has two central issues—that is the beginning and end of it—and those are the ethics of using genetic test data and the validity of that.
Mr. Nicholas Winterton (in the Chair): As the hon. Gentleman has resumed his seat, I merely suspend the sitting for exactly 15 minutes.
3.58 pm
Sitting suspended for a Division in the House.
4.13 pm
Dr. Turner : In my lifetime, the state of knowledge of genetics has advanced beyond the wildest dreams of
biological scientists. Even so, despite knowing the human genome sequence and the identification of a large number of individual genes linked to specific diseases, we are still finding out how much more we need to know before we can link people's genotypes with their lifetime's health expectations. It is dangerous to assume that the possession of a diseased gene inevitably means that an individual will develop the disease. Even the most clearly established link, that of Huntington's chorea, gives no indication of the likely time scale for developing the condition. We might all have one or more potentially lethal genes, and we could all find ourselves having to pay increased premiums if our full genetic make-up were known. The only certain outcome that can be predicted from our genotype is that we will die; but we cannot predict when.The purpose of genetic research is an increased understanding of disease and a search for new therapies. The results so far have been achieved by dint of the enormous and inspired efforts of scientists, which have involved huge financial investment. However, I do not know whether the insurance industry has made much contribution, either intellectual or financial, to that research. Insurers' interests in genetic information can be construed as only financial: there is certainly no suggestion—or very little suggestion—of altruism.
The insurance industry has always sought genetic information. For decades, it has used family histories in its underwriting of life policies and health insurance. It seems to have prospered quite adequately on that level of information. None the less, some insurers told the Select Committee that ignoring the results of genetic testing would be too costly, despite the fact that it is available on only about 0.01 per cent. of the insurance that is written. At the moment, the information is so poor a predictor that family history is as good as any other information available to the insurance industry.
To justify its assertion that ignoring genetic testing would be too costly, the insurance industry would need to show a level of scientific knowledge and an understanding of genetic information that it clearly lacks. The availability of genetic test data would not be of much help, even from the narrow perspective of the insurance industry's financial performance.
Other hon. Members have stated that the primary objective of genetic testing, which is to benefit patients, should not be prejudiced by the potential misuse of the information by third parties, whether insurers or employers. Prospective patients or volunteers must not be deterred from undergoing genetic testing because of fears that the information could be used to their disadvantage. If that were to happen, future research to define the links and mechanisms between the possession of potentially diseased genes and the development of the disease would be tragically prejudiced. It would also deny those individuals the benefit of any therapeutic intervention that may result from genetic testing.
The insurance industry as a whole shows a lamentable lack of understanding of the issues surrounding genetic testing and how it affects individuals, and its voluntary code of conduct is quite ineffective. We must therefore seriously consider whether it is right to permit insurers access to the results of genetic tests of individuals. At present, insurance companies would not be exposed to significant financial risk if they did not have access to that information. Fortunately, that fact is recognised by
the three companies that have acted most honourably by declining to seek that information. There would clearly be a risk to individuals if insurance companies could request such data.HIV status offers a perfectly good precedent for the confidentiality of personal data, and there are compelling reasons to extend the same principle to genetic test data. Therefore, I am pleased that our report recommended—and the Government accepted the need for—a voluntary moratorium on the use of genetic test data for insurance purposes and on requests about whether a prospective customer has undergone genetic testing. However, I would go further and advocate a much longer period than five years. For the sake of clarity and to avoid any excuses for error, there should ideally be a statutory moratorium possibly lasting 10 years. After that, the situation would need to be fully reviewed in the light of the available knowledge. Only in the light of increased knowledge would it be possible to separate the two main strands of principle involved in testing—the ethics and the practical validity. That can be done only if we have accurately predictive tests.
It has been said that we might undermine the whole principle of insurance if we continue to use genetic test data for insurance purposes. Until now, insurance has been successfully based on the principle of mutuality and of spreading the risks. We rarely hear of insurance companies going bust, and they would have to manage their affairs very badly to do so. Instead, they make some pretty healthy profits. Therefore, there is no risk to any sensibly conducted insurance business in the present context.
Mr. Heald : It is true, as we have heard, that genetic tests have been offered in a tiny number of cases, so the amounts at issue are small. However, does the hon. Gentleman agree that, as the Co-operative Insurance Society said in its evidence, a time might come when the technology is much more widely available, more accurate and more predictive? Important issues of principle would arise in those circumstances.
Dr. Turner : I thank the hon. Gentleman for that information, but increased knowledge is likely to show that we all have potentially lethal genes. None of us will know whether they will be expressed, nor will an insurance company. We would all become uninsurable if the possession of a particular gene were used as the only piece of evidence. I would therefore be reluctant to pursue that line.
If we are to separate ethics from practical validity, we need to have a long moratorium before we can assess whether the test information is a valid predictor of life outcomes. We may decide that we have reached that position with regard to the predictive accuracy of the science, but I for one would still question whether it would be ethical and, indeed, sensible to use such data as a predictor.
Mr. Gardiner : Is my hon. Friend saying that it would be wrong for either party to use the information, or that it would be wrong for the insurance company to use it to the detriment of the policyholder who had taken the test? It may advantage other policyholders who had not taken it by allowing their premiums to be reduced.
Dr. Turner : I am aware of my hon. Friend's fear that someone with a lethal gene might want, to all intents and
purposes, to rob an insurance company. That is a small risk. It is a fair point, and would be covered, I think, by the ancient legislation governing insurance, to which he referred.
Mr. Gardiner: I happily respond to that point. Section 18(3) of the Marine Insurance Act 1906, a copy of which I happen to have before me, states:
- "(3) In the absence of inquiry the following circumstances need not be disclosed, namely...
(c) Any circumstances as to which information is waived by the insurer".
Given that insurance companies would have waived the relevant information during the moratorium period, it would be legal and proper to conclude a contract under the Act.
Dr. Turner : I do not think that that really helps in the case that I am considering. A conundrum persists. The closest indicators of a link between test results and disease are found in Huntingdon's disease and HIV. Let us not forget HIV.
Huntingdon's disease has a simple genetic basis and the link between the possession of the lethal genes and the development of the disease is extremely strong. One would think that that would provide some justification for the CIS's policy of offering insurance to individuals with a family history if they have negative genetic test results. However, that would leave those with a family history but who have not been tested or who have positive results in an impossible position. How would they provide housing for their families if they could not get a mortgage because they could not get a mortgage protection policy? Even the most socially conscious insurers could run the risk of creating a genetic underclass. I am not sure that mortgage companies would be happy to grant a mortgage on the basis of a protection policy that included an exclusion clause for any specific disease. That would have to be explored, but I see many obstacles to that approach.
Mr. Gardiner : I agree with my hon. Friend, but a common feature of a mortgage and a life insurance policy is that they both run for a particular term. If a predictive test suggested that there was no risk within a certain period, but that there was a risk beyond it, it would be possible within the term of security to conclude both insurance arrangements and, on the back of those, a mortgage contract, on the basis of the test. My hon. Friend is right that we need to examine the issue carefully, but he is wrong in thinking that it would not be possible to reach an accommodation between predictive tests and the need to obtain insurance and a mortgage.
Dr. Turner : I did not suggest that it was impossible, but that there were obstacles. I do not think that there is great disagreement between us.
An equally strong link exists between HIV-positive status and the development of AIDS. However, some years ago an ethical decision was made to deny insurers access to such information. There are far more HIV-positive individuals at large in the population than there are people who have had genetic testing used for insurance purposes. I am not aware that the insurance
industry has suffered unduly from problems caused by people with HIV status. Fortunately, from the insurers' perspective, although there is a strong link between HIV-positive status and AIDS, the development of that disease has changed dramatically over the years. It has not been cured, but its management has improved dramatically, so that whereas previously an HIV-positive diagnosis constituted a death sentence to be executed within a year or two, patients are now living for decades. There is no known limit to the life expectancy of well-managed HIV patients. That is a good precedent, because it is almost certain that the same process will occur in the case of genetically controlled disease.At the same time as discovering the link between the possession of a gene and the development of a disease, science will also learn about mechanisms of therapeutic intervention that will make it possible to manage that disease. That will probably—in many cases certainly—lead to that gene being prevented from producing the disease with which it has been linked. It is not solely a question of establishing the existence of a potentially lethal gene: there is also the more complicated question of how, why and when that gene will be expressed as a disease and whether it will be possible for preventive measures to be taken during that chain of events.
The insurance argument runs the risk of being far too simplistic. There is a strong possibility that in, say, 10 years we shall be unhappy not only with the ethics of using genetic test data for insurance purposes, but with their validity as a predictor—not because we do not accept the link between the gene and the disease, but because we will become increasingly confident about the possibility of disturbing that link. In that event, there will still be no clear link between the possession of the gene and an insurance company's having to pay out on a life policy. I suspect that in 10 years' time, we might —in the light of what is then known—want to say to the insurance industry that it will have to do what it has always done and work with family histories, and that a personal genetic identity should remain confidential.
4.33 pm
Dr. Evan Harris (Oxford, West and Abingdon): I am forced to confess that I am not a proper doctor. I am a medical doctor, and I recognise that those who have a PhD have gone through higher postgraduate training than I did; I just did six years of hard slog—mainly in politics. Perhaps that is why I am here and not on the wards.
It is important to note that doctors of any kind do not have a monopoly of wisdom in this area, and that those who do not have a scientific background have a huge amount to bring to the debate, perhaps more than those who do, because this is a debate about society. I would even include the hon. Member for North-East Hertfordshire (Mr. Heald) in that. These questions relate to social issues, not just—indeed, not even mainly—scientific ones.
I should like to apologise, if that is the appropriate word, for the absence of my hon. Friend the Member for Somerton and Frome (Mr. Heath). He was here for most of the afternoon, but now has Front-Bench duties in the
other Chamber. That is one of the problems of duplication that many hon. Members are concerned about.There has been talk outside this Chamber about the role of the Opposition. The Liberal Democrats are strongly opposed to the Government's lack of action on this subject. I hate to stress party differences when speaking in this Chamber, particularly given the mood of the debate, but we do have differences with the Government over the way in which they have approached the matter, which are perhaps greater than those of the Conservative party. The Government got off quite lightly in the Select Committee report and even more lightly—breathtakingly so—in the criticisms outlined by the hon. Member for Birmingham, Selly Oak (Lynne Jones). The hon. Lady is no longer in her place, but many of us greatly respect her courage in taking on Governments, especially of her own party, on certain issues.
Dr. Iddon : Does the hon. Gentleman agree that that criticism does not apply only to this Labour Government? It could be a criticism of any Government during the past few decades, in that technology and moral issues move on apace in the public domain and government is always behind. I cite the debates on euthanasia, stem cell research and genetic modification as examples. It is unfair to criticise this Government, because all Governments, of whatever political complexion, are guilty of the same failings in that respect.
Dr. Harris : That is an important point. All Governments are chary of debating some of these issues. Indeed, this debate is long overdue. It should not have required a Select Committee report and a Government response to justify it. I have often bumped into the hon. Member for Norwich, North (Dr. Gibson) outside the Speaker's office, where we have both put in for Adjournment debates on this subject in the hope of getting some indication of the Government's thinking. I also accept that it is not just this Government who are peculiarly sensitive about discussing scientific, genetic and sexual health issues, although they are particularly sensitive about those subjects.
However, it is a Minister of this Government who is facing me today, not a chemist from another party who was recently in government and whom we could equally charge with certain faults. Having said that, the Conservative Government must be commended for the way in which they legislated on fertilisation embryology. It was brave to open that can of worms, that Pandora's box, at that time. The difficulty that we have had in dragging further legislation on that subject from subsequent Governments of both political complexions shows what a brave and correct step the initial legislation was.
When government gets involved in this area, it usually does a good job because it listens to advice. The problem is one of under-legislating, not faulty legislation. Unlike in some other areas of social policy, it is hard to pinpoint poor decisions in this field. I am disappointed in the discussion in the Select Committee report of the Government's approach. The hon. Members on the Committee are not usually shy in coming forward. I
hope that, if restraint was exercised by the hon. Member for Norwich, North and his colleagues, he gets his due reward.
Dr. Harris : Yes, if one believes in that approach. I hope also that the Government will get their comeuppance thereafter.
Political parties have also been bad at debating the issue. I am not aware—I await correction on this—that the issue has been debated in policy forums in the Conservative or Labour parties. I am not referring only to their party conferences, because many policy decisions are now made in policy forums. The Liberal Democrats have debated the matter on several occasions at our conferences. Our clear policy—I shall justify it in the light of the report later—states that we believe that an individual's genetic record should remain absolutely confidential and that
- "insurance companies, employers and others should not be entitled to require genetic testing".
It is not a knee-jerk reaction to take that perspective; it does not mean that we see the insurance industry as a big bad wolf from which people must be protected. I hope that the hon. Member for Brent, North (Mr. Gardiner) acknowledges that I accept that insurance companies have the right to try their best to identify where risk lies and make corrections accordingly. However, we have already discussed how reliable such data are.
We should not blame the insurance industry for being an insurance industry. I believe that if we want to protect society, we should rely on legislation rather than on the industry's good will. Even with the best will in the world, an insurance company will still have a duty to its shareholders to extract the maximum return for them, and to gain a competitive advantage over other insurance companies that take a more social approach—if they exist.
My argument is not with the insurance industry. I came to the debate open-minded. I have been a member of the UK Forum for Genetics and Insurance and have attended all their meetings, paying the same rate as some of the big insurance companies to do so, and have discussed some of the issues in detail with academics from Heriot-Watt university, Professor Raeburn, Chris Daykin and others. I maintain my belief that we should ensure that society can express its view that we should not go down this path.
Why should we perform genetic tests for insurance purposes? Insurance companies believe that such genetic tests will be reliable and relevant and could be viewed objectively. The hon. Member for Norwich, North explained why, if the insurance industry tried to use results from medical research it could fall into pitfalls due to bias. The bias would not be in the original medical research, but because the patient and sample selection might be geared towards medical research outcomes. I commend him on being so clear that even a lapsed medic such as me could understand him. The fact that something might appear reliable does not make it so, therefore the insurance industry needs to invest in some original research. I understand that it is not short of a bob or two for such work, unlike many medical researchers.
The insurance industry may want to undertake such research because it is relevant. A reliable test may be meaningful in identifying risk, so would enable differential rates to be offered. That is the business of insurance, and we could not argue otherwise. The industry also argues that a test is necessary if it is reliable and relevant, because it does not consider the other possibility, which is to pool the risk. Society could ask or make the industry decide to do so. It may not lose much by being denied genetic testing in the long-term, because many of the major diseases are multifactorial, and their penetrance and relevance is not strong and so hard to establish, so they are difficult to predict. Some of the actuarial models are incredibly complex, even those based on something as simple as the presence or absence of the Huntingdon's chorea gene. Few conditions have a high-penetrance, single-gene detectable impact, so the risk to be pooled is not great.
I do not believe that it would destroy the insurance industry or its general principles if it were subject to a self-denying ordnance for five years, or even permanently.
Mr. Gardiner : The hon. Gentleman has picked up on the point made by my hon. Friend the Member for Birmingham, Selly Oak about the fact that the industry has managed without genetic tests for a long time. Other hon. Members have referred to the fact that there has been no increased incidence of disease in the population as a whole. The hon. Gentleman asks why the industry cannot simply pool the risk. However, so far he has failed to address the basic problem about the asymmetry of information, though I hope that he will do so. The prospective policyholder may have information and use it in a way that would, in other circumstances in the insurance industry, constitute fraud.
Dr. Harris : The very first line on my scrawled note relates to the question of adverse selection. I shall not repeat everything that has been said on that, but I have risen twice to make the point that demonstrating that a theoretical risk of adverse selection exists is not the same as saying that it represents a practical objection. We need to look for evidence to show whether the very small number of people who may be affected would play the system, whether they would get away with it. and whether protection would be available, such as a maximum limit.
I asked for such evidence, because I was aware that it had been presented at a conference of the UK Forum for Genetics and Insurance. I could not find the papers earlier, but a briefing that many of us will have received from GeneWatch—an organisation with which I do not always agree—references that study, saying:
- "A recent US study with breast/ovarian cancer susceptibility genes found no evidence that they tried to mislead insurers."
The reference is to pages 29 to 39 of last year's volume 93 of the American Journal of Medical Genetics. If I remember correctly, that work was done at the university of Kentucky.
It is incumbent on the insurance industry to demonstrate in carefully designed studies that there is a significant risk of adverse selection and that having a ceiling—which would be a reasonable, possibly legislative, compromise—would have a bad effect on the rest of the insured pool. I do not think that such evidence exists, although it has been sought.
There are reasons why we may want to use genetic testing, but I do not find any of them conclusive.
Mr. Gardiner : Before the hon. Gentleman concludes this part of his speech, I should like to ask him one question. He was gracious enough, in one of his earlier interventions, to agree with me that we must establish the principles now that will become relevant in future. He accepted the suggestion that we may one day have many more tests with more accurate predictive power. If that is to be the case, does he not accept that one day so many people may be in an asymmetrical position, in which the information could be used for adverse selection, that he may have to review his position?
Dr. Harris : The fact that I support legislation banning something does not mean that I would never rethink my position; it is simply a matter of putting a legislative bar on something. Before the situation that he describes becomes a relevant factor, a huge change in the burden of disease would have to take place, between diseases known to be multifactorial and only somewhat genetic or hardly genetic at all and the impact of smoking, for example.
In principle, it is true that everything must be kept under review. Indeed, in the other Chamber, the Government are discussing a policy on student finance that is being kept under review, although it originally seemed absolute. However, that is not an argument for not legislating—it is an argument for reviewing legislation after the fact.
There are strong arguments, which have already been hinted at by other hon. Members, why it is bad for individual patients and for society to allow genetic testing. One of those arguments is the possible impact on what should be a clinical decision between patients and their counsellor and practitioner about whether to take a genetic test, which has big implications.
If our constituents were forced or encouraged to take genetic testing in order to get life insurance when they were buying a house, for example, it would add a non-clinical factor to the decision. I do not think that I am speaking from a peculiarly medical perspective when I say that in the patient-doctor relationship we try to ensure that big decisions about treatment and investigations are taken on the basis of a partnership between patients and those treating them. Decisions are based mainly, if not entirely, on clinical implications and a judgment about the ability of the patient to cope with the result—be it positive or negative—and its implications. I would hate patients with, for example, familial polycosis, to be discouraged from taking a genetic test because of the fear that it might have to be disclosed if they sought insurance, because in such cases they would be unable to benefit from screening through colonoscopy.
The insurance industry's interest in non-genetic testing is not good. The hon. Member for Brighton, Kemptown (Dr. Turner) said that there would be great difficulty in getting people to come forward for HIV testing, even though it might benefit them and their partners, if they feared that they would be stigmatised.There is a further worry: it is appalling that
an insurance company, on hearing that someone with a family history of the disease had tested positive for a BRCA gene, insisted on a prophylactic mastectomy before offering insurance. I do not bear any animosity towards the insurers; from their point of view it may have been a reasonable actuarial decision, but we should not allow that to intrude into what should be a strictly clinical decision. As well as other, more obvious, considerations, there will be a fundamental loss of equity in such circumstances as those who do not require life insurance because they are better off financially will have an advantage over the less well-off. I hope that the Minister will reassure me that the Government will not allow such things to go on, in spite of their inaction in the past four years. Something that may be reasonable from an insurance point of view is a salutary lesson about what we should avoid.The impact on society is another reason for avoiding such a course. I will not repeat what has been said about the danger of creating a genetic underclass of those who are uninsurable because of their genetic inheritance. As the hon. Member for Brent, North said, future developments—further predictable single-gene defects, for example—might increase the number of people brought within such a group.