Overview of Pediatric Ethicscope 2018 Volume 31 Number 1: Embracing diagnostic uncertainty; ECMO referral; moral language following pediatric death; ethical issues in genetics research; Children’s Mercy Bioethics.
Children are important participants in genetics research, and in genetics research involving children, IRBs must address the primary issues of privacy, confidentiality, informed consent, and the return of results.
In 1995, the medical establishment concluded genetic tests in minors should not be done outside of diagnosis of a treatable disease. The AAP concluded likewise in 2001 and 2013. A new phenomenon is emerging: young women of BRCA positive mothers are requesting genetic testing, and positions have softened with the recognition that some exceptions can be justified.