How did we get here? Mara, now nearly 17-years-old, was born with a neurogenic bladder. Up until two years ago, she was a model patient. No one worried about her adherence with self-catheterization or medications. She was optimistic about her future, cared about her health, and we looked forward to her bright and open future. But now Mara says,
“I don’t care.”
Pediatric patients who require medical care that is beyond the ability of their family to administer and/or maintain poses numerous ethical questions. Assuming the best interests of the child necessarily compel foster placement, what practical and ethical issues remain?
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.