With the insurance example I'm not sure I have a problem with that? The whole pre-existing condition conversation around health insurance is totally out-of-whack. Insurance was not designed for things you know have happened. It was invented to reduce the downside of things that could happen, commensurate with the risk of that thing happening. It's risk management. It makes zero sense to apply that model to something like universal health coverage. If someone is 100x more likely to get cancer, their insurance premiums should be higher. Just like if I'm a ship captain sailing into the bermuda triangle my premiums should be higher than sailing around the mediterranean.
If you feel that everyone should have healthcare, utilizing health "insurance" for this is the worst of kludges.
But I totally think this is more an absence of information than anything else. We all have a ton of de novo variation and that stuff is not going to be found in the databases.
1. Am carrying two recessive variants linked to a couple extremely rare developmental disorders (prevalence in live births of less than 1 in 10,000,000)
(no, I did not ask my children or my spouse or my parents or any other relatives for "consent").
But do you think there might be a difference between leaving out a cup of coffee you drank from versus publishing it and advertising it online?
When I was sequenced, a bunch of genetic counselors at Illumina analyzed it and said they couldn't find a single gene mutation that was linked to increased risk of disease, which was a surprise to me but is really absence of information rather than information of absence.