NPR's "Morning Edition" today featured a fascinating book, Fragile Beginnings, about medical care for very premature infants. Written by a physician, the book traces the history of treatment, the remarkable progress that has been made in recent decades, and the ethical dilemmas that parents and physicians face. The book should do much to raise awareness about some of the most difficult moral questions in health care.
Yet as I listened to the author describe his experience with his own daughter, I wondered whether book-writing parents are too quick to divulge the private matters of their children. In this case, the child apparently is doing very well despite a rocky start. But should the whole world know about her medical history?
It may be that on balance the benefits of telling her story outweigh any harms, but shouldn't that be a decision for her to make when she is mature enough to decide? Divulging a child's medical information may be particularly worrisome, but similar concerns are present when parents discuss other details about a child's life. I'm not sure where lines should be drawn on this issue, but I do think it's an issue that needs more consideration.
[cross-posted at Health Law Profs blog]
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