First scenario that comes to mind: The insurance company that gives you an extremely high quote because you come back as "high risk" from a 3rd party company that they use to vet applications, and that 3rd party company uses your genetic predisposition for a condition.
People knew about both.
The punishment for violations of the Genetic Information NonDiscrimination Act can be up to a million dollars in fines and some jail time. It is exceedingly rare for corporate officers to go to jail for acts of corporations, so likely violations would simply be fines. Cancer is expensive to cover (less so for insurance companies working with hospitals, much more for you and I), and the fines are relatively small, with the chance of jail time exceedingly small. I am unaware of anyone who has been prosecuted under this Act at all. I did a cursory search and didn't see anything.
The forgoing leads me to believe that like many crimes that have low rates of prosecution and relatively small fines, it would probably make sense for a corporate board (or series of employees acting under mutual light peer pressure) to use DNA information as an input into their actuarial tables.
Additionally, it would be difficult to spot clusters of people who are otherwise healthy with high insurance quotes. Even if you had the actual insurance quotes, getting peoples' medical information, especially in bulk, is extremely difficult because the aggregators of such information are typically bound by HIPAA.
All that to say, I think this is an extremely reasonable concerned and I would be shocked if companies didn't already use DNA information in some form, even if that form is as some input to a machine learning model, but I'll demurr on that subject because I know little about it.
Also you don't need to have a massive amount of HIPAA protected data to be publicly available for someone to notice. There are plenty of independent insurance brokers who serve as middlemen between consumers and the insurance companies. These people have access to all the medicals and usually end up having a decent understanding of how that translates into insurance rates. A drastic change in how insurance companies rate risk would be quickly noticed by these brokers. Right now if a broker receives a particularly bad rate from a specific insurer due to a quirk of their actuarial numbers, they will often turn around and apply to a competitor. That means any single insurer using this information wouldn't necessarily do that much damage to end consumers. It also means that any single insurer who did this would quickly get a reputation for providing rates that look unexplainable on the surface and it won't be long before people start asking why. Once again, I just don't think this is a realistic scenario.
It wasn't HIPPA protected when it was on my heritage, and it won't be healthcare data when it's eventually leaked and resold.
If you don't think legitimate companies are interested in buying that data, look around at the market for our password breach and identity theft data. There's a brisk, legal trade.
> look around at the market for our password breach and identity theft data. There's a brisk, legal trade.
If it is so easy to acquire this data legally, do you want to point to a business from which one can legally purchase "identity theft data"?
But there are more than a handful of "threat intelligence" or OSINT providers. I'll let you Google it for yourself.
> An employer who looks at an applicant's Facebook page or other social media posts could well learn information that it isn't entitled to have
True, but you cannot unlearn things...
So the believe in laws prohibiting information spread might need rethinking.
The problem with laws is that they can be changed relatively quickly while your DNA, and many other things, can't.
Afaik pre Hitler Germany already had a pretty extensive personal registration system that included thing like birth date, sex, _religion_... Which became very convenient later on. Once the data is out there you have to trust the current government and companies as well as all their successors for your entire lifetime (and potentially more in case of your DNA).
It already started btw, some insurance companies give you discounts if you accept to wear their smartwatch to prove that you exercise, it's just a matter of time before it slowly extends to other things.