The 'forbidden' questions on genetic testing

July 03, 2002

How much do you drink? Do you smoke? Do you take part in any dangerous pastimes? Questions like these will be familiar to anyone who has recently applied for life insurance.

However, insurance companies in the United Kingdom are currently prohibited from asking questions they may find even more helpful - questions about genetic tests, which could reveal whether applicants have genetic mutations which could put them at a high risk of developing certain diseases.

Now, a team based in Cardiff, Wales is working on research to help decide what use, if any, such tests might be to insurance companies.

Currently, insurance companies are concerned that people who have had genetic tests may take out large amounts of cover, without revealing that the tests show they have a high risk of developing a particular disease - a phenomenon known as "adverse selection."

Now, with funding from the Wellcome Trust's biomedical ethics programme, the Cardiff-based team aims to gather evidence on the potential impact of genetic testing on insurance costs, and the interaction between genetic testing and insurance buying.

The team comprises: Dr Lindsay Prior, Reader in Sociology in the School of Social Sciences at Cardiff University; Professor Peter Harper, Professor of Medical Genetics at the University of Wales College of Medicine (UWCM); Dr Jonathan Gray, Consultant in Medical Genetics (Cancer) at UWCM; and Professor Angus Macdonald, Professor of Actuarial Mathematics at Heriot-Watt University in Edinburgh, Scotland.

Dr Prior said: "The question is, how do people perceive the risk, and what do they do about it? This is an important issue for patients, whose lives it directly affects, and for clinicians, who fear that the insurance industry's attitude may deter people from having tests, as well as for the insurance industry who fear adverse selection."

For the first stage of the research Dr Prior and the team are extracting anonymous data on families affected by certain inherited diseases which develop in adult life.

They range from Huntington's disease, which is normally fatal, to conditions, which lead to colon cancer, which is highly treatable.

Some people do not even want their GP to know they carry the Huntington's gene, because they fear their notes may be handed over to an insurance company.

In contrast, there is huge benefit in patients' knowing if they have the mutation which triggers the cancer, but many professionals are concerned that people may be put off having the test if the result has to be declared to insurers - and this could jeopardise cancer prevention programmes.

Using the anonymous data, Professor Macdonald will construct mathematical models to determine what scope there is for adverse selection - and what effect this may have on insurance claims, and therefore premiums.

The second part of the study will involve asking a sample of adults from the families about their views and behaviour towards buying insurance. "From this information, we should be able to determine whether people can adversely select against insurance companies, and if they actually do," said Dr Prior.

The final stage of the research will involve interviewing representatives from the insurance companies themselves to gain an understanding of the problem from their point of view.

The team's findings will inform the policy which is introduced by the UK government, when the current moratorium on the use of genetic test results by insurers ends in October 2006.

Cardiff University

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