Joint statement on Genetic Research and Insurance announced at The Royal Society on 24 April 2001

This joint statement consists contributions from 3 interested bodies:

UK Forum on Genetics and Insurance (UKFGI) www.ukfgi.org.uk

The UKFGI was established to facilitate a constructive dialogue between the insurance industry, the genetics community and the public, and the forum is composed of representatives from each of these groups.

Genetic research is essential to ongoing development of genetics and the application of genetics to the improvement of human health. The UKFGI is pleased to have been instrumental in securing clarification of the insurance industry’s position regarding the use of genetic test results arising from research projects. The ABI’s statement that genetic test results arising from research projects will not be used for underwriting purposes removes a significant barrier for people considering participating in genetic research.

The UKFGI will continue to work to ensure the use of genetic information is handled appropriately by all parties having an interest in genetics and insurance.

Association of British Insurers (ABI) www.abi.org.uk

It has been suggested that people may be put off taking part in genetic research projects because they fear that insurers will use the results of any tests they undergo in that context in the underwriting process. This is not in fact the case. Insurers regard genetic research as crucial for developing new approaches to the prevention and treatment of serious conditions, and do not wish to discourage people from participating in such research. This statement is intended to clarify the position of ABI members.

Insurers are only interested in the results of genetic tests where the results have been communicated to the individual as part of a clinical diagnostic process and then, only if the test has been approved by GAIC (or is one of the tests submitted to GAIC by December 2000). Research projects rarely, if ever, produce test results that meet these criteria, and in these circumstances insurers would not be interested in any test results that the projects did produce.

In addition, whatever the circumstances, insurers do not take account of genetic test results that are made available to policyholders after their policy has been taken out. If someone already has an insurance policy, it will not be affected by the policyholder participating in a research project concerned with genetic testing.

ABI hopes that this statement of its members’ position will reassure people who are asked to take part in genetic research, and encourage them to participate in taking forward this vital area of work.

British Society for Human Genetics (BSHG)

The BSHG represents the clinicians, scientists and counsellors who are involved in helping families with genetic conditions and in carrying out genetic tests, including many research tests. We welcome the ABI's confirmation that research genetic tests will not affect any insurance proposal and do not need to be declared in any insurance application. This removes one source of anxiety for people asked to take part in genetic research, and should help avoid the risk that research will be hampered because of people's worries about insurance. Our patients depend on ongoing genetic research to reduce the burden that genetic disease causes to many families, and anything that makes research easier potentially benefits patients. We look forward to further positive discussions with the ABI.