Background

The position paper sets out the position of Alzheimer Europe and its member organisations in relation to genetic testing (in the context of Alzheimer's disease and other forms of dementia).

Executive Summary

Alzheimer Europe would like to recall some general principles which guide this present response:

  • Having a gene associated with Alzheimer's disease or another form of dementia does not mean that a person has the disease.
  • People who have a gene linked to Alzheimer's disease or another form of dementia have the same rights as anyone else.
  • Genetic testing does not only affect the person taking the test. It may also reveal information about other relatives who might not want to know.
  • No genetic test is 100% accurate.
  • The extent to which health cover is provided to citizens by the State social security system and/or privately contracted by individuals differs from one country to the next.

On the basis of these principles, Alzheimer Europe has developed the following position with regard to genetic testing:

  • Alzheimer Europe firmly believes that the use and/or possession of genetic information by insurance companies should be prohibited.
  • Alzheimer Europe strongly supports research into the genetic factors linked to dementia which might further our understanding of the cause and development of the disease and possibly contribute to future treatment.
  • Based on its current information, Alzheimer Europe does not encourage the use of any genetic test for dementia UNLESS such test has a high and proven success rate either in assessing the risk of developing the disease (or not as the case may be) or in detecting the existence of it in a particular individual.
  • Alzheimer Europe requests further information on the accuracy, reliability and predictive value of any genetic tests for dementia.
  • Genetic testing should always be accompanied by adequate pre- and post-test counselling.
  • Anonymous testing should be possible so that individuals can ensure that such information does not remain in their medical files against their will.

The fully position paper can be downloaded below.