Browsing by keyword "Testing DOI creation, Testing DOI creation"
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Feasibility of an Assessment Tool for Children's Competence to Consent to Predictive Genetic Testing: a Pilot StudyKnowledge 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 18 years 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 9.3 years and of children judged competent 12.1 years (p = .035). With 90 % sensitivity, children younger than 10.0 years were judged incompetent, with 90 % specificity children older than 11.8 years 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.
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Identification of genetic risk for pancreatic adenocarcinomaRecent consortium guidelines support research-based screening for those at high risk of pancreatic cancer (pancreatic ductal adenocarcinoma (PDAC)). Genetic testing plays an important role in the establishment of high-risk PDAC research clinics by delineating those individuals who would benefit from screening protocols. We retrospectively examined patients referred for PDAC-related genetic testing from January 2009 to June 2014. Patients were referred for a personal and/or family history of PDAC or a questioned diagnosis of hereditary pancreatitis (HP). Of the 75 referred patients, 36 underwent testing, of which 11 (31%) were mutation-positive. In total, 36% of patients with chronic pancreatitis carried a mutation, 11% of patients with a family history of PDAC carried a mutation, and 20% of patients with a personal history of PDAC carried a mutation. The most common barrier to testing was lack of insurance coverage. Genetic testing yields a suitable number of mutation-positive individuals who may benefit from increased screening. Subjects with possible HP yielded the highest positive rate. Individuals with idiopathic pancreatitis, onset of pancreatitis before the age of 30 years, and those with a family history of PDAC should be considered for testing. Sub-optimal insurance coverage remains a major deterrent to obtaining testing.
