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


Memorandum submitted by Professor J A Raeburn, Professor of Clinical Genetics, University of Nottingham

  1.  I am Professor of Clinical Genetics at Nottingham University and Honorary Consultant Clinical Geneticist in the Centre for Medical Genetics, City Hospital, Hucknall Road, Nottingham, NG5 1PB. My special interest is in Genetics in the Community, specifically how people in the community come to terms with genetic disadvantages and how our services can help them.

  2.  The National Health Service funds my post at Nottingham University, and a multidisciplinary team of clinicians and laboratory scientists. Our major aim is to provide and build up Genetic Services, so that people with genetic disadvantages can live and reproduce as normally as possible.

  3.  My clinical genetic and ABI work both involve the assessment of genetic risk, plus the task of summarising this in a clear manner.

  4.  If a genetic test result is available from someone at genetic risk, it makes it possible to be more precise about the risk. However, the age of onset of symptoms, or of the ages of significant disability, the onset of cancer, or of death will be variable.

  5.  With an individual who is test positive, the uncertainty (in 4 above) makes interpretation difficult.

  6.  For insurers, the uncertainty about a particular event (as in 4 above) is less of a problem. This is because underwriting is based on group data, not the exact timings for each individual.

  7.  The data about the prognosis of genetic conditions that are collected separately by clinicians and insurers are complementary. I have access to both sources and this gives additional insight.

  8.  The UK has had more detailed debate on genetics and insurance than any other country. This has added to knowledge; the UK now leads the world as a source of relevant evidence-based insurance practice where genetic disorders are involved.

  9.  Examples of UK initiatives are:

    (i)  The first Genetics Code of Practice (1977). This included detailed considerations of ethical and confidentiality issues. It also included an appeals procedure, which was without cost to individual applicants who considered that in their situations the Code had not been observed.

    (ii)  The first Genetics and Insurance Committee (GAIC) to advise government and inform the public. See for example, the GAIC website with details of its considerations of applications from insurers. The GAIC decision on Huntington's Disease (HD) genetic tests and life insurance (October 2000) did provoke criticism, being the first collection of data about the additional information that HD genetic tests provide, of insurance relevance. Whilst there were also criticisms of the actuarial model, all the alternative models suggested also demonstrated the actuarial relevance of knowing an HD genetic test result. Discussion of other applications to GAIC will also provoke differing views and will thereby add to our understanding.

    (iii)  The UK Forum on Genetics and Insurance is also unique. it is independent and it publishes (on its website) details of how insurers might use and interpret genetic results.

    (iv)  The UK has the first Genetics and Insurance Research Centre in the world (Professor Angus Macdonald, Heriot Watt University, Edinburgh). This Centre disseminates its work rapidly via the website.

    (v)  In addition, the UK has consistently had timely conferences and reports on wider issues such as genetics and bioethics or confidentiality (eg from the Wellcome Trust, the Genetic Interest Group or the Nuffield Foundation).

  10.  These UK strengths make it possible to collect data on which decisions on individual insurance issues can be based. Thus unfair discrimination is unlikely but if it does occur, or is suspected, it can be resolved at no cost to the applicant.

  11.  Of other single gene disorders, for which tests are currently available at NHS genetic centres, the condition known as hereditary non-polyposis colorectal cancer (HNPCC) is the one that might be considered for a future GAIC application. For this condition, a positive or negative test in an "at risk" person gives highly predictive information. During the past two years there has been an increase in both clinical genetic and insurance enquiries about this condition. Since there are well-developed regimes to reduce cancer risk in test positive people who have HNPCC, underwriters can take these beneficial factors into account in assessing the insurance risk.

  12.  There are many diseases in which genetic factors play a part but in which the knowledge of a genetic test result does not provide sufficient predictive value. An example would be late onset Alzheimer's disease, which is associated with particular genetic patterns of the APOE gene. Applications to GAIC for access to such APOE results would only be made if there were a sufficiently high predictive value.

  13.  The insurance industry has been using family history data for over 100 years, much longer than have geneticists! When enquiries to me as Genetic Adviser include family history information (often with positive genetic test results as well), the accuracy of the family history is always considered. Ideally asking the relevant geneticist for an assessment of the individual's risk would check this, because this would obviate disclosure of confidential information about members of the family.

  14.  Currently, I am analysing the Genetic Adviser queries received from insurers via the ABI since 1997. The early evidence from these is that underwriting decisions after genetic consultation are reasonable and often lead to premiums at standard rates or at rates only a little above standard.

  15.  It would be worth looking outside the UK to see if moratoria have been successful in terms of helping the genetically disadvantaged. I have not yet seen any evidence of such an advantage, especially as regards insurance premiums.

  16.  Most people would be happy to help the disadvantaged, in particular, those with genetic disadvantages. If we do that, we should use methods that work and which are cost-effective. Non-disclosure of known genetic test results as in the moratoria of some countries (see l5) may not work. In any case, a moratorium is only one strategy to help people with positive genetic tests. There are almost certainly other, better, strategies.

  17.  The increased use of genetic tests in medicine has led to greater numbers attending genetic clinics. Throughout the country more resources are needed to provide the necessary services. If the principle were accepted, that insurers only wished to know of genetic test results if they had predictive value exceeding a particular level, then it would clarify the situation and simplify the procedures of GAIC. Since the levels of prediction would be similar to those in clinical genetic use, simple summaries from an applicant's geneticist could ensure that premiums were fair.

  18.  The media slant on genetics and insurance might deter people from having tests. We should seek accurate figures of how many people have chosen not to come forward for genetic tests because of the adverse media coverage or for other reasons. For some time, I have been seeking this information and also the proportion of people who cannot afford the premium rates offered, from organisations such as the Huntington's Disease Association and brokers with relevant experience.

  19.  It is good that the approach of insurance companies (partly because of their differing products) does vary so much. This gives potential applicants (including those with a family history of genetic disease) more choice. Some insurers may use the privilege of having access to genetic test results, whilst others will not. Both approaches could benefit those at genetic risk, but in differing circumstances.

  20.  In the UK, based on legitimate actuarial modelling and predictions which will steadily become more precise, there is a system, which can enhance the gathering of more data. This will be used to fine-tune the range of possible approaches to underwriting when there is a genetic disorder.

  21.  It is important to consider all possible options to help those most disadvantaged by genetic disorders. The best option might be a "mixed market" of insurers, all using the ABI Code of Practice as a core standard. Some companies might then develop special options, but these could vary to enhance choice. The insurance industry, the genetic community, patient interests groups (such as the Genetic Interest Group) and the Government need to examine all the options. Several different approaches will be better than non-disclosure of known genetic test results. A decision, either to request a voluntary moratorium or to ban insurance access to test results, would preclude the types of research, which might inform such options.

  22.  I am very sensitive about possible "conflicts of interest" in my differing roles and take all steps to declare my three related commitments, to patients, to the ABI and to GAIC.

  23.  I would be prepared to help the Committee in any way to progress this issue in ways that would be to the benefit of patients and families with genetic diseases.

22 March 2001

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