In this particular case the insurance company should not be able to request data from the past. If they want any data they should order tests themselves and only use that data.
I'm with you on this paragraph …
> In this particular case the insurance company should not be able to request data from the past. If they want any data they should order tests themselves and only use that data.
… but you lose me here. By this logic, it seems like car-insurance companies shouldn't be able to look at my driving history, but should have to administer me a driving test themselves. This would clearly make premiums skyrocket, and I don't think is the right solution.
On a side note I am not even sure if individualized car insurance (and health insurance) prices are worth the effort of collecting all that data. You have to build up a big bureaucracy that evaluates all the data. Maybe it's cheaper to just take a nationwide average and save money by not needing that bureaucracy?
Hypothetically, if I were to give my DNA to many of these services, I'm giving it to them with full understanding that they are allowed to share that information with anyone they see fit. Well, I can't now complain that they saw fit to share it with my insurance company can I? I certainly can't complain that my insurance company was interested in getting that data. The insurance companies collect relevant historical data for every other type of insurance.
I do agree with you that your DNA should be private. And it is private, so long as you keep it private. Telling a thirdparty, especially one who is a known loudmouth, the details of your DNA is the opposite of keeping it private.
I know legally this is ok but "sharing as they see fit" practices just need to stop. We have to go back to a model where the customer pays for a service and that's it. No sharing in the background to subsidize the cost of the service. That would make some services more expensive but then the customer can share his data for a price. If he chooses to do so .
I'm not sure that I agree with your summary of my point. In fact, I think that stronger regulations against data vendors are probably the right thing. I was merely arguing that a reflexive argument against allowing companies to gather external data might have unexpected consequences.
The answer (to this narrow question[1]) is to not do business with shops like 23andme, who are horrible gossips. Find a service that actually respects you and your wishes if you want a test.
Admittedly this will become harder as testing becomes part of medical care. But telling your doctor not to tell the insurance company what's going on would never fly anyway.
[1] To the broader questions of medical privacy, well, burning the private insurance industry to the ground and chumming the PBMs would be a good start.
If they hold onto the data for any purpose at all, then their is always the risk that they go bankrupt and ownership of the data passes to someone who doesn't respect it.