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.
Since Henry Beecher’s 1966 revelation of the scandal at the Willowbrook School, the ethics of biomedical research involving pediatric subjects has never been the same. Throughout history, the conversation about non-therapeutic pediatric research has moved from access to protection only to return to access once more.
The ethical issues in pediatrics can vary considerably from those in adult medicine. Thus, ethics education generalized for adult care is not necessarily relevant to the specific issues that arise in pediatric settings. The Children’s Mercy Bioethics Center’s Certificate Program in Pediatric Bioethics is the only program in the world that focuses exclusively on pediatrics.
An opening thought: sometimes cases in clinical ethics conclude, but leave a thought that remains just out of reach. In the wake of the case, a nagging sense of something meaningful yet elusive, like a broken outline, or a silhouette that can’t quite be brought into focus–remains. We invite you to consider the following. Poem by Robert Frost.
Shortages of life-saving chemotherapeutics and supportive care agents are pervasive and enduring. These shortages represent a true public health crisis, and surprisingly, have failed to garner greater attention within the medical community or the public at-large.
A set of twins was transferred to NICU; 25-weekers who came in for a neurosurgery consult on Friday. They both had significant brain bleeds, white matter loss, and hydrocephalus. One of the infants was better off than the other, but both had midline shift and were seizing.
Clinicians in the adult system are infrequently prepared to treat the variety of conditions seen in pediatrics, and the few providers who are available to this population struggle to absorb the growing number of older patients with childhood-onset disorders. Patients are frequently ill prepared to take on the responsibilities required to manage their own care; the pediatric system lacks functional processes for teaching patients how to develop these skills.