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Psychologische Aspekte der prädiktiven Diagnostik bei Huntingtonscher Krankheit

  • G. Wolff
Part of the Jahrbuch der medizinischen Psychologie book series (MEDPSYCHOL, volume 6)

Zusammenfassung

Die Entdeckung genetischer Marker in unmittelbarer Nachbarschaft der Erbanlage für die Huntingtonsche Krankheit ermöglicht eine prädiktive (präsymptomatische) Diagnostik bei bislang gesunden Kindern und Betroffenen. Für diese sog. Risikopersonen kann eine solche Diagnostik trotz der ihr inhärenten Unsicherheiten neue Handlungsmöglichkeiten eröffnen. Sie wirft jedoch auch eine Fülle neuer ethischer, rechtlicher, psychologischer und sozialer Fragen auf. Die vorliegende Arbeit beschäftigt sich v. a. mit den psychologischen Implikationen einer solchen Diagnostik. Ausgehend von der Darstellung der individuellen und familiären Problematik der Lebenssituation von Risikopersonen und ihrer Einstellung zur prädiktiven Diagnostik werden psychologische Aspekte der Durchführung, mögliche Auswirkungen positiver und negativer Diagnosen, die bisher praktischen Erfahrungen im Rahmen von Pilotprojekten sowie Probleme der genetischen Beratung diskutiert Hieraus ergibt sich, daß sowohl die Durchführung als auch die Beratung vor und die Betreuung nach einer prädiktiven Diagnostik eine intensive interdisziplinäre Zusammenarbeit von Humangenetikern, Neurologen, Psychiatern, Psychotherapeuten, Sozialarbeitern und Laienorganisationen erfordern wird.

Summary

The identification of DNA markers genetically linked to Huntington disease has made possible predictive (presymptomatic) testing for this disease in affected families. In spite of its limitations, this test opens new decisions for the offspring of affected patients. However, its potential impact raises many new ethical, legal, psychological, and social questions. The present paper deals mainly with the psychological implications of predictive testing for Huntington disease. Starting from an account of the problems of the individual and the familial situation of persons at risk and their attitude to predictive testing, psychological aspects of practical application, possible consequences of positive and negative diagnoses, the experience of pilot projects in progress, and problems of genetic counselling are discussed. Given its potential impact, predictive testing should be offered exclusively in a setting that provides continuing and diverse forms of support through the cooperation of human geneticists, neurologists, psychiatrists, psychotherapists, social workers, and lay organizations.

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Copyright information

© Springer-Verlag Berlin Heidelberg 1991

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  • G. Wolff

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