Since I've only been in practice 8 years, I don't claim to have seen everything, but this was a new one today. I grabbed the chart of a newborn I'd already seen yesterday, and it's all marked up in bold red ink "NO Hep B, NO NBS."
The Hep B thing I've dealt with before: no biggie (another thread, please).
But when I walked into the room to see the baby and asked the mom what this newborn screen concern was all about, she told me that it was for religious reasons. I've cared for kids of the full spectrum of world religions, and never heard of that one (not even from Jehovah's Witnesses or Christian Scientists), so I pressed further. She then said that her husband (who wasn't present) was behind it, and that they didn't want their baby's DNA stored in the state lab indefinitely, where the government might someday do experiments with it for stuff like human cloning, which is against their religion.
My blood pressure rising, I told her about the 4 kids I can think of off the top of my head whose lives have been saved by newborn screening, and that I could not imagine passing up the opportunity to find out NOW if my child had a curable disease, but she held her ground. In the baby's chart, I found that the nursing staff had already procured a waiver form from the Indiana state health department.
I was assigned this baby as a "No Doc" because these people had thankfully already selected a pediatrician who doesn't have privileges at my hospital, so I won't need to tell them I can't care for their kid if we have such a huge philosophical disagreement. But, I was wondering if any PedTalkers have even heard of such a concern, and also if anyone has any knowledge of research being done using residual newborn screen blood samples.