Select Committee on Science and Technology Appendices to the Minutes of Evidence


Memorandum submitted by the Alzheimer's Society


  1.1  The Alzheimer's Society is the leading care and research charity for people with dementia and their carers. It was founded in 1979 as the Alzheimer's Disease Society. It provides information and education, support for carers, and quality day and home care. It funds medical and scientific research and campaigns for improved health and social services and greater public understanding of dementia.

  1.2  The Society has over 22,000 members and operates through a partnership between some 250 branches and support groups and the national organisation in England, Wales and Northern Ireland. The Society brings together carers, family members, health and social care professionals, researchers, scientists and politicians through shared concern for people with dementia and those who care for them.

  1.3  Dementia is one of the most significant health and social care challenges of the next century. There are over 700,000 people with dementia in the UK. Dementia affects one person in 20 aged over 65 and one person in five as they reach 80 years of age in the UK. As the population ages so the number of people with dementia will grow. There are 17,000 people with dementia aged under 65 years of age in the UK.

  1.4  The use of genetic information raises important public, social and moral issues and the Alzheimer's Society welcomes the Committee's enquiry into the use of genetics and insurance. The Society believes that the Government's decision to allow insurers to take into account the results of genetic tests will have adverse consequences for people with Alzheimer's disease. It will increase social exclusion, fail to protect consumers and contribute little to improving public health.


  2.1  Alzheimer's is the most common form of dementia. Alzheimer's is a multifactorial condition and the importance of any individual risk factor will vary from person to person. In the majority of cases of Alzheimer's we do not know what causes it. Most people develop Alzheimer's later in life and age is the most significant risk factor for Alzheimer's disease. For most people, genes will play a role in determining whether or not the disease develops. For people who develop Alzheimer's in older age, there is a known genetic risk factor associated with a protein apoliprotein E (ApoE). It is not deterministic nor absolute and must act in conjunction with other risk factors to produce the symptoms of the disease.

  2.2  There are a very small number of families who have an inherited form of Alzheimer's. Very few people will inherit a gene that inevitably gives them Alzheimer's and which in turn they will pass on to their children. It is this group of people, who tend to develop Alzheimer's at a younger age, that are likely to be subject to discrimination by the insurance industry in the near future on the grounds of genetic testing.

  2.3  Familial early onset Alzheimer's disease (FAD) affects people under 65 years of age. Out of the 17,000 younger people with dementia in the UK, less than a third will have Alzheimer's disease. Of these, approximately half will carry one of the three identified gene mutations that can be detected by current genetic screening. This means that less than 3,000 people show a Mendelian pattern of inheritance.

  2.4  There are three genes associated with familial early onset Alzheimer's named on the Association of British Insurers' (ABI) matrix attached to the Code of Practice Genetic Testing—amyloid precursor protein (APP), presenilin-1 and pre-senelin-2. However, out of the 47 reported Alzheimer's disease mutations in presenilin-1 or presenlin-2, 35 have been found in single kindreds or in single individual patients and in no other unrelated families or patients. New patients or families are likely to have negative results in a screen for known presenilin gene defects even when they are harbouring a mutation in one of these genes. Equally, mutations in genes relevant to Alzheimer's disease might be non-pathogenic even when found in an affected family member. Non-pathogenic mutations in the presenilin genes have been reported. This means that great skill is required in interpreting the results of genetic tests. The insurance industry has been able to discriminate against individuals who have a positive test for these genes.

  2.5  The insurance industry has argued that it would experience adverse consequences from being denied information about an applicant's genetic test results. However, there is a lack of evidence on both the numbers of people affected by genetic predispositions and the level of risk that they currently represent for an insurer. The Alzheimer's Society believes that the insurance industry has failed to demonstrate the need to reject the moratorium on using genetic test results proposed by the Human Genetics Advisory Commission (HGAC) in 1997.


  3.1  The Government's decision to allow insurers to use genetic tests legitimises discrimination. People with Alzheimer's disease and their carers already experience high levels of social stigma. This action can only make an individual and their family further excluded from society.

  3.2  A person excluded from obtaining affordable insurance, particularly life assurance, may be unable to obtain a mortgage, own their own property, or protect both themselves and their family. This will lead to further marginalisation and inequity, particularly for those who wish to take out additional insurance for their health and welfare.

  3.3  The ABI has argued that the provision of a national health service mitigates against the necessity of ensuring the opportunity for universal insurance cover. This fails to recognise the inadequacy of provision of dementia care. Indeed, much of what is deemed to be dementia care currently falls outside the remit of "health". As a result, people with dementia and their carers bear the majority of the costs of dementia care.

  3.4  The decision to allow insurers to use the results of genetic tests creates inequity. We now have a situation in which two people with an identical genetic inheritance do not have the same access to insurance. Compare, for example, one person who takes out life and health insurance at a standard cost and then requests a genetic test without incurring any financial penalty, and another who undergoes a genetic test and then applies for insurance cover. Both individuals have the same genetic make-up, but only the latter individual is denied affordable insurance.

  3.5  The ABI's claim that no-one is forced to have a genetic test in order to obtain insurance may prove to be an empty assurance. By default, in order to obtain insurance at an affordable price, a person with a known family history of a disease, may be forced to undergo genetic testing. Despite being urged to do so by the Government, insurers have failed to demonstrate that the needs of people excluded from purchasing affordable insurance can be met.


  4.1  The information on genetic testing circulated by the ABI does little to promote public understanding. The way in which Alzheimer's disease is listed on the ABI matrix is misleading. It also creates confusion and alarm. While the list makes reference to "familial adenomatous polyposis", "hereditary motor and sensory neuropathy" and "hereditary breast/ovarian cancer" (emphasis added), Alzheimer's disease is simply listed as "Alzheimer's disease". No explanation is given that the named genes are associated with a rare, familial type of early onset Alzheimer's disease.

  4.2  It is not Alzheimer's disease that is under question, but familial early onset autosomal dominant Alzheimer's disease and this is normally referred to in the literature as FAD or early onset FAD. When the media reports this issue it frequently fails to make it clear that the test relates only to those with early onset Alzheimer's, affecting only 1 per cent of people with Alzheimer's disease. As a result, the Society's Alzheimer's Helpline is left to provide accurate information on genetics and insurance.

  4.3  The Society has a great deal of experience in dealing with members of the public concerned about risk or perceived risk. The Alzheimer's Helpline deals frequently with callers who are concerned about genetics and Alzheimer's disease and plays a crucial role in informing the public and in providing accurate information to the public.

  4.4  A person with early onset Alzheimer's disease wanting to take responsibility for their own health and help to prevent the ill-health of others in the future will be dissuaded from getting involved in genetic research and genetic testing. Perceived fear of discrimination may deter a person from taking a genetic test which could be of benefit in the early detection of the disease and in therapeutic intervention. In addition, genetic research may be impeded because of the unwillingness of individuals to be involved in genetic testing. The participation of individual families has been tremendously important in enhancing our understanding of Alzheimer's disease to date. The Advisory Committee on Genetic Testing (now part of the Human Genetics Commission) was set an impractical task of monitoring the number of people who are dissuaded from taking a genetic test. The Society remains unclear how the level of deterrence will be monitored.

  4.4  The Nuffield Council on Bioethics has highlighted an additional concern which both the ABI and the Government appear to have failed to address. The use of genetic information for multiple purposes raises a number of issues about consent and disclosure. The use of APOE illustrates the dilemmas that may arise in the future as our genetic understanding grows. APOE testing occurs as part of the diagnosis and treatment of heart disease and is available in other countries such as the USA. APOE is also a risk factor associated with Alzheimer's disease, although it is of limited predictive value at the moment. This means that a person may give their consent for one type of medical test and have the result used for another purpose. It also highlights the importance of obtaining as full a consent as possible.


  5.1  The voluntary nature of the ABI code is insufficient to protect consumers. The Government's decision to set up the Genetics and Insurance Committee does little to reassure the public about the use/misuse of genetic information. The insurance industry has failed to demonstrate that it:

    (a)  needs to collect information on pre-symptomatic genetic test results;

    (b)  has competence in dealing with this type of genetic information;

    (c )  has the ability to regulate itself effectively.

  5.2  The Society was particularly concerned that, prior to an informal agreement between the ABI and GAIC is December 2000, the ABI refused to wait until GAIC approved a genetic test before permitting its use. This undermines the confidence that a consumer affected by a genetic disorder could have in the regulatory framework. The ABI's decision to allow insurers to use tests that had not been approved by the GAIC endorsed unfair discrimination. The Government's response to the Human Genetics Advisory Committee (HGAC) report stated that approval through the new evaluation mechanism should be a pre-requisite for the use of the results of any test by the industry. This has not happened. Indeed, the ABI has been allowed to continue with its own voluntary code unimpeded and in clear disregard of the government's wishes.

  5.3  The ABI code of practice states that insurers must not offer lower than standard premiums (preferred life policies) on the basis of genetic test results. This undertaking runs counter to normal underwriting practice, where a lower premium may be offered if the applicant presents a lower risk (for example, a lower rate for non-smokers). However, insurers consider that it is necessary in order to allay public concern that an uninsurable genetic underclass may develop if the insurance industry were to seek out the "good" genetic risks by offering them cheaper insurance. The Society believes that this policy is unlikely to be sustainable in the long term.

  5.4  The insurance industry argues that they need to collect personal medical information in order to predict the actuarial implications of people knowing about their own genetic make-up. The Society understands the importance of monitoring the numbers of people affected by validated genetic tests. However, why it has to be the insurance industry itself that collects this information is not evident, particularly when the information cannot be applied retrospectively, nor linked to family members. Not only would members of the public be reassured by the independent and anonymous collection of information on genetic testing, but it would also serve to protect individuals known to be carrying a genetic mutation.

  5.5  The Alzheimer's Society has failed to see evidence that the insurance industry is either able or committed to promoting accurate information about genetics and insurance. In particular it was only after complaints from the Alzheimer's Society that a major breach of the ABI code of practice was rectified.

  5.6  In March 2000, the Alzheimer's Society carried out a small survey which indicated that the ABI's Code of Practice was being breached by a significant proportion of members of the ABI. Indeed, the ABI acknowledged that this `aspect of the Genetic Testing Code of Practice [had] been breached by some firms'. The Society found that insurers were breaking their own rules on requesting information about genetic testing. Under the ABI's own code of practice people should not be asked about genetic testing when applying for life assurance on mortgages up to £100,000. A random survey of standard insurance forms showed that most of the UK's top insurers ask the applicant to reveal results of all medical tests and investigations. Of nine companies examined, only one, Allied Dunbar, made clear to customers that they do not need to disclose results from any genetic tests they may have had.

  5.7  Paragraphs 30-31 of the Code of Practice state that:

    30  Insurers must make clear to applicants before the application form is completed the special arrangements for mortgage related life insurance (paragraph 31 refers).

    31  Existing Genetic Test results need not be disclosed in applications for life assurance up to a total of £100,000 which are directly linked to a new mortgage for the purchase of a house to be occupied by the applicant. This is the standard for the life insurance industry (subject to review in December 2001) which members may choose to exceed. If an applicant chooses to disclose the result, it must be ignored unless it is in the applicant's favour (eg by preventing a loading owing to family history).

  The Alzheimer's Society understands that the Code of Practice identifies a standard which ABI member companies must meet. Its principles apply to all ABI members and compliance with the Code of Practice is a condition of ABI membership. Moreover, paragraph 11 of the Code of Practice states that insurers' compliance with the Code and details of how it has been achieved, must be certified annually to the ABI by the insurance company's Chief Executive. The ABI's failure to ensure compliance of its own members on this issue casts doubts on the industry's ability to regulate itself.

  5.8  The Alzheimer's Society has been unable to determine how the ABI monitors compliance. The Society requested further information on the annual exercise on compliance in September 1999 but details were withheld.


  6.1  The Alzheimer's Society understands the desire to put in place a social framework for dealing with genetic knowledge and the reasons for the establishment of the Genetics and Insurance Committee (GAIC). However, the Society believes that the establishment of such a mechanism is not only at odds with practice in most other countries around the world, serving to re-enforce discrimination on the grounds of genetic inheritance, but ultimately unworkable, given the logical extension of genetic tests for a large population.

  6.2  The Genetics and Insurance Committee was set up to evaluate the scientific and actuarial evidence in support of the use of genetic tests for insurance products. While the Society welcomes the active involvement of patient groups in the work of the Committee, we have expressed our concern on a number of issues surrounding the process and procedure of the Committee.

  6.3  In order to have an application to use genetic test information, an insurance company needs to provide "peer reviewed evidence of the clinical impact of the disease". However, GAIC does not demand the same level of independent review when it comes to actuarial relevance. This is surprising given the lack of knowledge based in this area. Incidentally, there is no lack of journals in which research/data could be published. The Society believes that the same standards should apply to both actuarial and clinical data.

  6.4  Moreover, the need to ensure that the actuarial evidence submitted to GAIC is of high enough quality was highlighted by the referee for the application for use of the test for Huntingdon's disease. Indeed, in its announcement on the use of this test, GAIC stated that "although the Committee was persuaded that its threshold for actuarial relevance was undoubtedly met, it also found that there were imperfections in the methodology used within the application and the precise results obtained." The detailed referee's report reveals substantial flaws in the data submitted.

  6.5  Both of the disciplines of clinical genetics and actuarial science are saturated in technical terms and concepts that make it hard to understand. As a result, the Society welcomes GAIC's attempts at including a section explaining the practice of underwriting as well as a glossary. However, the Society believes that further explanation is needed on why "an additional mortality risk of at least +50 per cent or an additional morbidity risk of at least +25 per cent" is judged to be actuarially significant. Indeed, when the Society requested a definition of "actuarial significance" from the Institute of Actuaries it was unable to obtain one. In fact, the Society was informed that "if an actuarist says it is significant then it is."

  6.6  GAIC has not made it clear how it intends to monitor compliance of its rulings. The Society would like to see further clarification on this area.

  6.7  The Alzheimer's Society is also concerned about a potential conflict of interest. The ABI Code of Practice on Genetic Testing states that the ABI Genetics Adviser has declared that seven tests are "relevant, reliable and valid at November 1998" (paragraph 4). In addition, the ABI Code of Practice declares in Part 3 that one of the responsibilities of the Genetics Adviser is "to inform the ABI of any new genetic tests whose results could be valid for insurance purposes, so that the ABI could consider applying to the GAIC for validation of the test result". When the Minister announced the establishment of the GAIC it was described as a new independent review body. No expert, however reputable, can independently review their own advice. The fact that the ABI Genetics Adviser is a member of the GAIC and remains actively involved in its decision making raises some concerns.


  7.1  The Alzheimer's Society understands the desire to put in place a social framework for dealing with genetic knowledge. However, this is not an issue that is unique to the UK. Although different social security and insurance systems exist, many other countries have adopted a more cautious approach which is more focused on consumer rights. Austria, Belgium, Denmark, France, and Norway all have some form of legislation that prohibits the use (and, in some countries, the collection or possession) of genetic information by insurance companies.

  7.2  The Alzheimer's Society believes that the Government's decision to allow the insurance industry to discriminate against individuals with a known genetic predisposition is both premature and unjustifiable with our present genetic knowledge. It also runs counter to the Government's expressed aims of reducing social exclusion. If we do not want to build a society which is based on inequality on the grounds of genetic inheritance, the European Convention on Human Rights and Biomedicine should be endorsed. It states that "any form of discrimination against a person on grounds of his or her genetic inheritance is prohibited."

  7.3  The insurance industry has argued that it would experience adverse financial consequences from being denied information about an applicant's genetic tests results. The evidence for this claim is weak and is not upheld by previous experience with HIV/AIDS. In addition, at least two UK insurance companies have publicly announced that an individual does not need to reveal any genetic test information when applying for insurance cover. This position undermines the ABI's claim that the industry would suffer adverse consequences. The insurance industry has failed to demonstrate the need to reject the moratorium on using genetic test results proposed by the HGAC. The Society believes that the insurance industry should be required to demonstrate that a denial of genetic information obtained from a pre-symptomatic test would be actuarially significant in terms of adverse selection.

18 January 2001

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