Alzheimer's Society

Alzheimer's Society position statement

Insurers should not be able to use genetic information to discriminate against an individual.

Legislation should be introduced to outlaw discrimination on the grounds of genetics.

Background

In 2001, following a recommendation from the Human Genetics
Commission (HGC) a moratorium was put in place until November 2006 on the use of genetic tests by insurance companies for sums insured of less than £500,000 for life insurance and less than £300,000 for other insurance products. Over these limits, insurers can only use tests approved by the Genetics and Insurance Committee (GAIC). Currently, the only test that insurers can use is for Huntington's disease, for use in determining premiums for life insurance policies over £500,000.

The Society welcomed the moratorium. It believes that allowing the insurance industry to discriminate against individuals with a known genetic predisposition is both unfair and unjustifiable with our present genetic knowledge. The HGC has made clear that the level of risk to the industry from rare genetic disorders is minimal.

The Society believes that the insurance industry has failed to demonstrate that it:

• needs to collect information on pre-symptomatic genetic test results
• has competence in dealing with this type of genetic information
• has the ability to regulate itself effectively.

The Society believes that following the moratorium, legislation should be enacted to outlaw discrimination on the grounds of genetics. We are concerned that people's fears about potential discrimination may deter them from taking a genetic test that could be of benefit in the early detection of the disease and in therapeutic intervention. In addition, genetic research may be impeded because of the unwillingness of individuals to be involved in genetic research. The participation of individual families has been tremendously important in enhancing our understanding of dementia to date.

The Society campaigns for:

• Legislation to outlaw discrimination on the grounds of genetic characteristics
• The UK to endorse the European Convention on Human Rights and Biomedecine. It states that 'any form of discrimination against a person on grounds of his or her genetic inheritance is prohibited'.

Further information

The Alzheimer's Society (2003) Genetics and Alzheimer's disease (information sheet). London.

Alzheimer's Society (2001) Submission to Human Genetics Commission: whose hands on your genes? London.

Last updated: July 2004