ASHG Issues Position Statement on Genetic Testing in Children and Adolescents; Opposes Routine Whole Genome Sequencing for Healthy Newborns and Healthy Children at This Time; Many Issues Addressed

The American Society of Human Genetics (ASHG) Workgroup on Pediatric Genetic and Genomic Testing has issued a position statement on Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents. Published in the July 2, 2015 issue of theThe American Journal of Human Genetics, the statement aims to guide approaches to genetic testing for children in the research and clinical contexts. It also serves as an update to the Society’s 1995 statement ( of the same title, which was issued jointly with the American College of Medical Genetics. “Twenty years ago, genetic tests were first being introduced into clinical medicine, and they focused on single-gene disorders in the context of family history and population screening,” said Jeffrey R. Botkin, M.D., M.P.H., first author of the report and chair of the working group. “At that time, we had limited data on how genetic testing affected children and their families, and generally suggested that unless obtaining this data could provide timely medical benefits to the child, testing should be deferred to adulthood,” he added. Since then, the scope and accuracy of genetic testing have improved, and health professionals have gained experience explaining, recommending, and administering such tests.
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