Genetic Discrimination & Life Insurance

GENETIC DISCRIMINATION & LIFE INSURANCE
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Following a recent Government announcement that the insurance industry will not use information from genetic tests unfairly, new research indicates that families affected by a genetic disorder believe that some UK life insurance companies have unfairly discriminated against them in the past. This appears to be the result of ignorance or error in interpreting genetic information.

Published this week (BMJ, 12 December), Is there genetic discrimination in life insurance? was conducted by the Unit for Policy Research in Science and Medicine (PRISM) at the Wellcome Trust, the world's largest medical research charity. After analysing the responses of a postal questionnaire, sent to 7,000 members of seven British support groups for families with genetic disorders, they conclude that a third of those sampled experienced problems obtaining life insurance. Yet 13% of these cases posed no actuarial risk on genetic grounds, so discrimination was inappropriate and unjustified in this subgroup.

Commenting on the research Dr Tom Wilkie, one of the authors and head of Bioethics at the Wellcome Trust, said: "The debate over genetics and insurance has been bedevilled by a lack of evidence. This is the first empirical study in the UK on genetic discrimination in life insurance. It demonstrates that the public do perceive an element of discrimination against them because of their genetic status. Yet the inconsistency of insurance companies indicates error when interpreting genetic test results, not a corporate policy of discrimination."

"There is evidence from the United States that some insurers there - including their medical advisers - are not up to speed with modern human genetics. Comparable research has not been done in the UK, so we do not know how well informed insurance personnel are here. Nonetheless, the Association of British Insurers has already taken steps to increase the industry's understanding of the subject, notably by appointing a clinical geneticist as its advisor."

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"The course of the study also demonstrated just how difficult it is to obtain systematic data on the extent of genetic discrimination. A great deal more work is needed to gather the evidence upon which the public policy should be based," Dr Wilkie concluded.

The sample group surveyed were from genetic support groups whose disorder stems from defects in a single gene (monogenic) - example, cystic fibrosis. It is envisaged that this data will provide
a guide to how society might handle genetic information expected from future scientific progress on disorders where several genes may contribute, in conjunction with lifestyle or environmental factors: for example Alzheimer's or some types of cardiovascular disease. The implications of such polygenic disorders for the insurance industry are more difficult to understand as any genetic component would give only comparatively low risk factors, not 100% probability that an individual might develop the condition.

Is there genetic discrimination in life insurance? follows a recent response by the Government to a report by the Human Genetics Advisory Commission (HGAC) which looked at the impact of genetic testing on insurance. This response acknowledged public concerns relating to genetics and insurance and proposed that an independent evaluation system be established to assess whether test results should be used by insurers.

For further information contact:
Noorece Ahmed/Catherine Nestor/Ify Uwechue
Press Office, The Wellcome Trust
Tel: 0171 611 8540 / 8846 / 8612
Fax: 0171 611 8416
email: press.office@wellcome.ac.uk

For a copy of the paper contact the BMJ Press Office on 0171 383 6254.

The Wellcome Trust
183 Euston Road, London NW1 2BE Tel: 0171 611 8888 Fax: 0171 611 8545

The Wellcome Trust is a registered charity, no. 210183 Trustee: The Wellcome Trust Limited
Registered in England, no. 2711000 Registered Office, 183 Euston Road, London NW1 2BE

Wellcome Trust, The

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