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

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      Genetics in Medicine

      Ovid Technologies (Wolters Kluwer Health)

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          Most cited references 17

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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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              Predictive genetic testing in children and adults: a study of emotional impact.

              To determine whether, following predictive genetic testing for familial adenomatous polyposis (FAP), children or adults receiving positive results experience clinically significant levels of anxiety or depression, and whether children receiving positive results experience higher levels of anxiety or depression than adults receiving positive results. Two studies, one cross sectional and one prospective. 208 unaffected subjects (148 adults and 60 children) at risk for FAP who have undergone genetic testing since 1990. anxiety, depression; independent variables: test results, demographic measures, psychological resources (optimism, self-esteem). Study 1. In children receiving positive results, mean scores for anxiety and depression were within the normal range. There was a trend for children receiving positive results to be more anxious and depressed than those receiving negative results. In adults, mean scores for anxiety were within the normal range for those receiving negative results, but were in the clinical range for those receiving positive results, with 43% (95% CI 23-65) of the latter having scores in this range. Regardless of test result, adults were more likely to be clinically anxious if they were low in optimism or self-esteem. Children receiving positive or negative results did not experience greater anxiety or depression than adults. Study 2. For children receiving a positive test result, mean scores for anxiety, depression, and self-esteem were unchanged over the year following the result, while mean anxiety scores decreased and self-esteem increased after receipt of a negative test result over the same period of time. Children, as a group, did not show clinically significant distress over the first year following predictive genetic testing. Adults were more likely to be clinically anxious if they received a positive result or were low in optimism or self-esteem, with interacting effects. The association between anxiety, self-esteem, and optimism suggests that counselling should be targeted, not only at those with positive test results, but also at those low in psychological resources.
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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
                © 2005

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