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      An international survey of predictive genetic testing in children for adult onset conditions

      , , , ,
      Genetics in Medicine
      Ovid Technologies (Wolters Kluwer Health)

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          The competency of children and adolescents to make informed treatment decisions.

          This study was a test for developmental differences in competency to make informed treatment decisions. 96 subjects, 24 (12 males and 12 females) at each of 4 age levels (9, 14, 18, and 21), were administered a measure developed to assess competency according to 4 legal standards. The measure included 4 hypothetical treatment dilemmas and a structured interview protocol. Overall, 14-year-olds did not differ from adults. 9-year-olds appeared less competent than adults with respect to their ability to reason about and understand the treatment information provided in the dilemmas. However, they did not differ from older subjects in their expression of reasonable preferences regarding treatment. It is concluded that the findings do not support the denial of the right of self-determination to adolescents in health-care situations on the basis of a presumption of incapacity. Further, children as young as 9 appear able to participate meaningfully in personal health-care decision making.
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            The genetic testing of children. Working Party of the Clinical Genetics Society (UK)

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              Psychological consequences and predictors of adverse events in the first 5 years after predictive testing for Huntington's disease.

              The promise of genetic medicine is to provide information, based on genotype, to persons not yet sick about their risk of future illness. However, little is known of the long-term psychological effects for asymptomatic persons learning their risk of having a serious disease. Predictive genetic testing for Huntington's disease (HD) has been offered for the longest time for any disease. In the present study, the psychological consequences of predictive testing were assessed prospectively in individuals at risk for HD during seven visits over 5 years. Questionnaires of standard measures of psychological distress (the General Severity Index of the Symptom Check List-90-Revised), depression (the Beck Depression Inventory), and general well-being (the General Well-Being Scale) were administered to the participants. A significant reduction in psychological distress was observed for both result groups throughout 2 years (p < 0.001) and at 5 years (p = 0.002). Despite the overall improvement of the psychological well-being, 6.9% (14 of 202) of the participants experienced an adverse event during the first 2 years after predictive testing that was clinically significant. The frequency of all defined adverse events in the participants was 21.8%, with higher frequency in the increased risk group (p = 0.03) and most occurring within 12 months of receiving results.
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                Author and article information

                Journal
                Genetics in Medicine
                Genet Med
                Ovid Technologies (Wolters Kluwer Health)
                1098-3600
                1530-0366
                July 2005
                July 2005
                : 7
                : 6
                : 390-396
                Article
                10.1097/01.GIM.0000170775.39092.44
                8caa0c25-c92e-4a9c-a419-13a161309af8
                © 2005
                History

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