My son's ultra-rare condition means we're part of a research study that might help future kids but definitely won't help him and I struggle with feeling like we're sacrificing his privacy for other people's hypothetical children.
More people experience this than they realize.
The tension between contributing to scientific knowledge that could prevent future suffering and protecting present family privacy creates complex moral calculations with no clear answers.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.