Genetic testing developments have enabled healthcare providers to evaluate a broad range of potential genetic conditions and is considered commonplace with 95 percent of all neonates born in the United States (US) being tested for up to 50 different conditions (Understanding Genetics: A District of Columbia Guide for Patients and Health Professionals., 2010). Each state has discretion on the determination of what testing is performed, however, the US Health Resources and Services Administration has made a recommendation for uniform screening for 29 genetic diseases. This directive is supported by the American Association of Pediatrics (AAP) and the American College of Medical Genetics (ACMG) genomics social, ethical, and legal issues committee (“Ethical and Policy Issues in Genetic Testing and Screening of Children,” 2013). In addition to guidance on screening these organizations have published new guidance on the ethical, legal, and policy issues relevant to genetic testing in children (Botkin, 2016).
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