HUMAN GENETICS
AND HEALTH

Parliamentary Briefing No.1

/

October 2001

Genetic Testing
in Insurance:
A New Form of Discrimination

Genetic tests are becoming available to detect genes associated with disease. These tests may help diagnose an illness in some patients so it can be treated or predict a possible future illness in others or their children.

However, genetic test information could be abused and lead to genetic discrimination if used as grounds for refusing insurance cover or employment. Four out of five people in Britain believe that genetic information should not be used in setting insurance premiums[1].

Parliament will be debating

Genetics and Insurance

on Thursday 25th October

There are no laws in the UK to prevent insurers, employers or others discriminating against people because of their genetic makeup.

GeneWatch UK believes that any benefits of genetic testing will not be realised unless new legislation is introduced to prevent genetic discrimination. This should include a ban on the use of genetic test results by insurers and employers.

Four out of five people in Britain believe that genetic information should not be used in setting insurance premiums.

There are no laws in the UK to prevent insurers, employers or others discriminating against people because of their genetic makeup.

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For most diseases, a genetic test only indicates a susceptibility to disease with no certainty of the illness developing.

The use of any genetic test to set insurance premiums could lead to a ‘genetic underclass’ of people who cannot buy insurance.

Genetic Tests

“Genetic tests are very good at distinguishing those who carry a particular gene from those who do not. They are somewhat less accurate at identifying those who will and will not eventually get the disease.”
Professor Bobrow, Head of Medical Genetics at Addenbrooke’s NHS Trust [2].

Genetic tests can be used:

  • to confirm a diagnosis that someone has a genetic disease (such as haemophilia or cystic fibrosis);
  • to test whether someone has inherited a gene that means they will certainly contract a particular disease later in life (e.g. Huntington’s disease);
  • to test whether someone is a carrier for a genetic disease – meaning that there is a risk their children will have the disease although they are healthy themselves;
  • to test for genes that show a susceptibility to a disease and hence predict (with considerable uncertainty) the likelihood of someone getting the disease in future (e.g. some forms of breast cancer or Alzheimers).

Genetic tests can be performed on adults, children or foetuses and the number of tests will increase dramatically as genetic research continues. Attention is now shifting from single-gene disorders to the major diseases such as cancer and heart disease, which have many different causes including lifestyle and environment. However, a genetic test can only indicate a susceptibility to the disease with no certainty of the illness developing.

Genetic Testing and Insurance – Major Concerns

“Insurers appear to have been far more interested in establishing their future right to use genetic test results in assessing premiums, than in whether or not they are reliable or relevant.”
House of Commons Select Committee on Science and Technology, March 2001.

The use of any genetic test to set insurance premiums could lead to a ‘genetic underclass’ of people who cannot buy insurance and are therefore excluded from the housing market. In future, if private healthcare increases in the UK, they may also have their access to healthcare restricted.

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For some people, the potential for genetic discrimination by insurers and employers could be a powerful deterrent to taking a genetic test that might help the early diagnosis and treatment of a disease.

Adverse Selection – Reality or Myth?

The insurance industry argues that it will be financially disadvantaged if it is not allowed to use genetic test results. It claims that people who have had a test which reveals a genetic disease or susceptibility will buy expensive policies to exploit the system – this is known as ‘adverse selection’.

However, potential financial losses are quite limited, since:

  • adult-onset single-gene disorders are so rare that very few people would be in a position to apply for insurance secretly knowing that they would in future suffer from an inherited disease[3];
  • other genetic test results give a highly uncertain indication of susceptibility to future illness. Using them to decide whether to buy insurance could be as misguided as using them to set insurance premiums. A recent US study of women with breast/ovarian cancer susceptibility genes found no evidence that they tried to mislead insurers[4].

Public opinion is opposed to the use of genetic tests by insurers and presumably people therefore prefer to share any potential financial risks (as they do in the NHS) rather than be required to reveal genetic test results.

The insurance industry has already shown itself to be untrustworthy when it was criticised by the House of Commons Committee for failing to follow its own guidelines. The Association of British Insurers (ABI) also decided recently that four of the genetic tests it had previously recommended are now no longer reliable2.

The Current Situation

There are no laws in the UK which control the use of genetic information by insurers. Although there is a consensus that people should not be required to take genetic tests, the insurance industry would like people to reveal the results of any tests that they do have.

Using highly uncertain genetic test results to decide whether to buy insurance could be as misguided as using them to set insurance premiums.

The insurance industry has already shown itself to be untrustworthy by not following its own guidelines.

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Legislation overseas[5],[6]

  • Austria, Denmark and Norway have all prohibited insurers from using genetic test results by law.
  • The Netherlands has similar legislation but with an exemption for high value policies.
  • Sweden has a formal agreement that insurers will not use or request genetic information, with some exceptions for high-value policies.
  • US federal law prohibits exclusions from group health insurance on the basis of genetic test results. Many US states have introduced additional legislation.

In response to recent criticism2,[7], the ABI extended its voluntary partial moratorium on the use of genetic tests[8]. The partial moratorium only covers policies up to £300,000. Above this level, applicants are required to reveal the results of any genetic tests approved by the Genetics and Insurance Committee (GAIC). So far, a test for Huntington’s disease has been approved. Tests for early onset (hereditary) Alzheimer’s and hereditary ovarian and breast cancer are now being considered[9].

The need for legislation is now urgent. In the next few years, more genetic tests will become available and more people will be asked to give blood samples for genetic research. It is critical that a ban on the use of genetic test results by insurers and employers is in place before the use of genetic tests and collection of genetic samples becomes widespread. Without a ban, any benefits of genetic research are unlikely to be realised.

Austria, Denmark and Norway have all prohibited insurers from using genetic test results by law.

It is critical that a ban on the use of genetic test results by insurers and employers is in place before the use of genetic tests, and collection of genetic samples, becomes widespread.

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References

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[1]HGC (2001), Public Attitudes to Human Genetic Information, MORI report for the Human Genetics Commission, March 2001.

[2]House of Commons Science and Technology Committee, Fifth Report, Genetics and Insurance, 26 March 2001, HC174.

[3]Harper, P.S. (1997), Genetic Testing, Life Insurance and Adverse Selection, Phil. Trans. of the Royal Society of London, B 352, 1067-1075.

[4]Zick, C.D., Smith, K.R., Mayer, R.N., Botkin, J.R. (2000), Genetic Testing, Adverse Selection, and the Demand for Life Insurance, Amercian Journal of Medical Genetics 93: 29-39.

[5]Murthy, A., Dixon, A., Mossialos, E. (2001), Genetic testing and insurance, Journal of the Royal Society of Medicine, 94, 57-60.

[6]Crosbie, D. (2000), Protection of genetic information: an international comparison. Report to the Human GeneticsCommission.

[7]Human Genetics Commission (2001), The Use of Genetic Information in Insurance: Interim Recommendation of the HGC.

[8]ABI Press release, Insurers Confirm Decision to Extend Moratorium On Use of Genetic Test Results, 1 May 2001.

[9]