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Risk interpretation and attitudes towards predictive genetic tests for neuropsychiatric diseases in the German general population and in high-risk groups - [German]


Duration:

Oct 2002 - Oct 2004

Funding body:

Bundesministerium für Bildung und Forschung (BMBF)

Contact:

Illes, Franciska

Klinik und Poliklinik für Psychiatrie und Psychotherapie

Sigmund-Freud-Str. 25

53105 Bonn

Germany

Phone: +49-(0)228-287 6966 Fax: +49-(0)228-287 4471

E-Mail: franciska.illes@ukb.uni-bonn.de

Member:

Rietschel, Marcella (Prof. Dr.)

Illes, Franciska (Dipl.-Psych.)

Prell, Kerstin (Dipl.-Psych.)

Short Description:

Risk interpretation and attitudes towards predictive genetic tests for neuropsychiatric diseases in the German general population and in high-risk groups

Neuropsychiatric diseases are caused by the interaction of various susceptibility genes and environmental factors. As the contribution of each gene mutation is very small, the knowledge of single vulnerability genes will have little power to predict onset and progression of these diseases. Although the term "hereditability" is not anymore associated with mendelian laws only, the understanding of complex genetic mechanisms is not yet widespread. To ensure that the results of psychiatric-genetic research are handled in a responsible way, their integration in a realistic context is essential.

The findings of our previous representative study in the German general population suggest that the majority of the respondents had problems in understanding probabilistic risk information. As the individual prevention of disease will be based on risk stratification, the ability to handle risk information will be of central importance in the future. It is likely that, by means of a simple blood test it will be possible to compile an individual risk profile for each person regarding a multitude of diseases. Research concerning risk perception points out that the subjective interpretation of numerical probability data differs interindividually and does not correspond to the objective risk. The first aim of our present project is to assess the attitudes of the general population towards predictive genetic tests on the one hand and the individual as well as social consequences of their application on the other hand. The second goal of our study is the analysis of perception and interpretation of probabilistic risk information. Furthermore the correlation of risk perception and test consequences will be investigated. Alzheimer's disease was chosen as an example for neuropsychiatric disorders because the clinical picture is a matter of common knowledge and everybody has a substantial risk to develop Morbus Alzheimer. Furthermore a vulnerability gene has already been identified, which leads to a (slight) modification of the a priori risk.

In the context of a pretest, 102 persons from the general population have been surveyed with a preliminary version of our questionnaire. Even if these data cannot be considered as representative, they provide a first insight: Following hopes were mentioned as arguments supporting genetic testing: "Prevention/retardation of the disease by early diagnosis", "the possibility to prepare for the disease (financially, socially, psychologically)" and "to have certainty". Arguments against genetic testing were mostly: "psychological burden" and "lack of therapeutic possibilities".

Keywords

genetic research / engineering – genetic testing / counseling

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