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


Memorandum submitted by the Huntington's Disease Association


  Huntington's Disease is a degenerative neurological disorder causing severe physical incapacity, personality changes and dementia. It is hereditary with each child of an affected parent at 50 per cent risk of inheriting the disease. It affects both males and females with onset of the disease occurring most commonly between the ages of 35 and 45. There is no cure and only limited palliative treatment for this devastating disease which progresses over a period of ten to 25 years.

  Genetic testing, initially through linkage analysis and since 1993 through a direct gene test, will indicate whether a person has inherited the faulty gene. However, the number of people taking such tests remains a small proportion of those at risk (approximately 15 per cent). Most people would rather live with their 50 per cent risk than know with certainty whether they have inherited the gene. This scenario is only likely to change if effective treatment became available.

1.   What do you feel to be the main benefits and disadvantages of insurance companies using genetic test results in assessing policies?

  People with a known risk of genetic disease have been placed at a disadvantage for many, many years as their family history is taken into account when assessing premiums. With Huntington's Disease people most commonly are offered life insurance with a 300 per cent loading (three times a standard premium). Therefore many people are unable to afford to take out such policies. The situation with other insurance products such as Critical Illness, Long Term Care and Income Protection is even more difficult with people rarely being offered terms.

  People are advised by geneticists/genetics counsellors to obtain insurance before they have a genetic test on the grounds that if they have a positive (abnormal result) they will be unable to obtain insurance at all.

  People with a negative (normal result) are currently able to use this information to obtain insurance at standard rates. The Insurance Industry is currently intimating that if they are unable to use genetic test results they will treat people with a family history of Huntington's Disease who have not inherited the faulty gene as if they hadn't had the test. This would surely lead to people not revealing the family history because they will be confident that will not die from Huntington's Disease.

  There has been experience of insurance companies being forbidden to use the results of genetic tests (in the Netherlands). As a result the insurance companies took such a harsh view of family history that people at risk of Huntington's Disease where unable to obtain life insurance at all. This situation has been resolved by legislation whereby people are able to obtain life insurance up to the value of 150,000 Euros without disclosing either a family history or genetic tests results. Perhaps a similar system could be introduced in the United Kingdom.

  Life insurance is an important and desirable protection enabling people to protect their families. However, it is of great concern to families that should it ever become necessary for them to have health, income protection or long term care insurance as the result of a change in government policy they would be denied the protection that should be the right of all citizens in a civilised society. With the current state of the NHS and the difficulties faced by people in the pursuit of decent long-term care, families are already denied a choice as a result of their genetic inheritance.

2.   How effective do you feel the current regulatory system is?

  At present most regulation relates to the ABI's voluntary code of practice. It is important that, should legislation be proposed, it should not result in disadvantaging people further, for example by forbidding the use of negative test results or by allowing the Insurance Industry to load premiums even more heavily or refuse terms on the basis of family history.

3.   Do you feel that the use of genetic test results could have an effect on medical research and progress in your area?

  Some members of our Association have expressed the view that they do not want to take a genetic test or even make an appointment with a genetics centre because such information will appear on their medical records.

  It is possible that people are discouraged from taking part in research projects because they are concerned that their "at risk" status will become known to interested parties such as insurers or employers. People who already have developed the disease might be discouraged from taking part because it might reveal to third parties the "at risk" status of their children or other family members.

February 2001

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