caa a22 4500 605544271 CHVBK 20210128100930.0 cr unu---uuuuu 210128e20151201xx s 000 0 eng 10.1007/s10897-015-9835-7 doi (NATIONALLICENCE)springer-10.1007/s10897-015-9835-7 Feasibility of an Assessment Tool for Children's Competence to Consent to Predictive Genetic Testing: a Pilot Study [Elektronische Daten] [Irma Hein, Pieter Troost, Robert Lindeboom, Imke Christiaans, Thomas Grisso, Johannes van Goudoever, Ramón Lindauer] Knowledge on children's capacities to consent to medical treatment is limited. Also, age limits for asking children's consent vary considerably between countries. Decision-making on predictive genetic testing (PGT) is especially complicated, considering the ongoing ethical debate. In order to examine just age limits for alleged competence to consent in children, we evaluated feasibility of a standardized assessment tool, and investigated cutoff ages for children's competence to consent to PGT. We performed a pilot study, including 17 pediatric outpatients between 6 and 18years at risk for an autosomal dominantly inherited cardiac disease, eligible for predictive genetic testing. The reference standard for competence was established by experts trained in the relevant criteria for competent decision-making. The MacArthur Competence Assessment Tool for Treatment (MacCAT-T) served as index test. Data analysis included raw agreement between competence classifications, difference in mean ages between children judged competent and judged incompetent, and estimation of cutoff ages for judgments of competence. Twelve (71%) children were considered competent by the reference standard, and 16 (94%) by the MacCAT-T, with an overall agreement of 76%. The expert judgments disagreed in most cases, while the MacCAT-T judgments agreed in 65%. Mean age of children judged incompetent was 9.3years and of children judged competent 12.1years (p = .035). With 90% sensitivity, children younger than 10.0years were judged incompetent, with 90% specificity children older than 11.8years were judged competent. Feasibility of the MacCAT-T in children is confirmed. Initial findings on age cutoffs are indicative for children between the age of 12 and 18 to be judged competent for involvement in the informed consent process. Future research on appropriate age-limits for children's alleged competence to consent is needed. The Author(s), 2015 Sensitivity and specificity nationallicence Decision-making nationallicence Minors nationallicence Genetic testing nationallicence Informed consent nationallicence Mental competence nationallicence Hein Irma Department of Child and Adolescent Psychiatry, Academic Medical Center, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands aut Troost Pieter Department of Child and Adolescent Psychiatry, Academic Medical Center, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands aut Lindeboom Robert Department of Clinical Methods and Public Health, Academic Medical Center, Amsterdam, The Netherlands aut Christiaans Imke Department of Clinical Genetics, Academic Medical Center, Amsterdam, The Netherlands aut Grisso Thomas Department of Psychology, Law and Psychiatry, University of Massachusetts Medical School, Worcester, MA, USA aut van Goudoever Johannes Department of Pediatrics, Emma Children's Hospital, Academic Medical Center, and Department of Pediatrics, VU University Medical Center, Amsterdam, The Netherlands aut Lindauer Ramón Department of Child and Adolescent Psychiatry, Academic Medical Center, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 971-977 1059-7700 24:6<971 2015 24 10897 https://doi.org/10.1007/s10897-015-9835-7 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-015-9835-7 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Hein Irma Department of Child and Adolescent Psychiatry, Academic Medical Center, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Troost Pieter Department of Child and Adolescent Psychiatry, Academic Medical Center, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Lindeboom Robert Department of Clinical Methods and Public Health, Academic Medical Center, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Christiaans Imke Department of Clinical Genetics, Academic Medical Center, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Grisso Thomas Department of Psychology, Law and Psychiatry, University of Massachusetts Medical School, Worcester, MA, USA aut NATIONALLICENCE 700 1- van Goudoever Johannes Department of Pediatrics, Emma Children's Hospital, Academic Medical Center, and Department of Pediatrics, VU University Medical Center, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Lindauer Ramón Department of Child and Adolescent Psychiatry, Academic Medical Center, Meibergdreef 5, 1105 AZ, Amsterdam, The Netherlands aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 971-977 1059-7700 24:6<971 2015 24 10897