We sent blood samples to Harvard to look at some chromosomal breakpoints that are unique (about 6 people in my extended family)...and nothing ever made it into any medical records, or even back to the clinic that drew the blood.
They didn't find anything that helped with their research so I think we were very quickly disregarded. But even if they had, I don't see how it would have affected us. We did not need to say anything about the results to medical professionals. Not sure about insurance, but they were not looking at any particular syndrome with a name, or any proven known effects, so there was nothing I could have reported anyway.
