title: Decreasing uptake of predictive testing for Huntington's disease in a German centre: 12 years' experience (1993-2004).
abstract: In this retrospective study, we examined changes in decision-making for and against the predictive genetic test for Huntington's disease including 478 persons at risk who had undergone genetic counselling in one centre in Germany between 1993 and 2004. At the outset of the counselling procedure the majority of subjects (71%) wanted to make use of the test, yet the actual demand of the predictive test result declined from 67 to 38% over the years. In addition, the time interval between counselling session and blood withdrawal was reduced, as determined by the counselees: in 2000-2004 the majority of persons at risk made the appointment for blood withdrawal after the shortest possible time span. Demographic factors of the cohort remained comparatively stable in the investigated time period. An association was evident between the ratio of test usage and the counselling person. These and other possible factors influencing the time flow of predictive DNA testing are discussed. Further studies are necessary to investigate whether changes of test demand rates are a general phenomenon.
authors.affiliation: Department of Human Genetics, Ruhr-University of Bochum, Bochum, Germany.
authors.forename: Christiane
authors.initials: C
authors.lastname: Bernhardt
authors.forename: Anne-Marie
authors.initials: AM
authors.lastname: Schwan
authors.forename: Peter
authors.initials: P
authors.lastname: Kraus
authors.forename: Joerg Thomas
authors.initials: JT
authors.lastname: Epplen
authors.forename: Erdmute
authors.initials: E
authors.lastname: Kunstmann
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000523:psychology / Q000706:statistics & numerical data*; D005858:Germany; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D012189:Retrospective Studies; D055815:Young Adult
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