Considerations for Pediatric Retirement from Athletics Following Repetitive Concussive Traumatic Brain Injury: Incorporating the Right to an Open Future.

Guidance regarding the decision to remove an adolescent from athletic competition immediately following an acute concussive injury and the safe return of play in the short term is widely accepted and supported by clinical evidence, local institutional policies, and state and federal laws. There is considerably less guidance regarding the decision to permanently retire an adolescent athlete for medical reasons due to concussive injuries. In this article, we discuss the clinical and non-clinical considerations that should guide clinicians in discussions regarding the adolescent athlete's permanent retirement by emphasizing the ethical obligation to protect the child's right to an open future as possibly determinative in otherwise ambiguous cases.

Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records.

BACKGROUND: Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. PRIVACY AND ETHICAL CONSIDERATIONS: Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. METHODS: This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. CONCLUSION: The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and the presence of restricted interests and repetitive behaviors. There have been recent concerns about increased prevalence, and this article seeks to elaborate on factors that may influence prevalence rates, including recent changes to the diagnostic criteria. The authors review evidence that ASD is a neurobiological disorder influenced by both genetic and environmental factors affecting the developing brain, and enumerate factors that correlate with ASD risk. Finally, the article describes how clinical evaluation begins with developmental screening, followed by referral for a definitive diagnosis, and provides guidance on screening for comorbid conditions.