The real risk in my mind is that this opens market space for Beijing-backed companies like Novogene in Sacramento. They will occupy that space and every adjacent space as fast as they can. They'll sequence your tumor genetics, or your germline to get a better read on you're kid's inherited disease. And you'll never know it because your doctor contracted with them, they signed a BAA (so it's all legal, right). And then Novogene will take that BAA to the bathroom, piss on it, and send your genome to China for cross-referencing in Face++ and see if you have any Uigher in you.
Everyone will eventually get some amount of sequencing done, probably multiple times throughout their lives. The vastly more important question in my mind is who's going to do it, and what are their incentives?
With cost-conscious medical professionals, you can bet it will be the lowest bidder, and the lowest bidder will not have your best interests in mind.
This wild, unfounded fantasy completely misses the point: genetic privacy is fundamentally unlike other types of private information. It is trivially easy for someone to collect your genetic information if they really want to, completely legally and without your consent. They could, for example, obtain bits of the multitude of genetic material you spread around your environment simply by existing -- chewing gum, hair, cigarette butts, poop. Or, just look at a few close relatives of yours who overshared everything on some online database. And these are just the obvious ways.
The ways in which this data can be abused (eg. prescreening for insurance, loans, etc.) doesn't line up with someone going out and hunting identifiable DNA samples to build a database. It does line up with self submitted/self funded database - you are basically paying to get in a DB that can be used to discriminate against you - it almost seems comical
As someone said in a comment above, blood samples of all people born in CA (and probably in many other locations) are stored centrally, so there is a non-zero chance their DNA info is leaking to foreign databases. I highly recommend to watch "yt! How to Survive the 21st Century Davos 2020". Harari makes very important statements related to this discussion.
this is why there needs to be laws about using and transferring information about you (biological or not). Regulation, and transparency prevents abuses.
If your sample was tested for trace genetic traits you didn't ask for, you have avenues to pursue if laws exists, but right now no such avenues are available.
This "China = boogeyman" has become very common on HN and I'm surprised it's rarely called out for the xenophobia it represents. For most of the rest of the world, the US is not much more trustworthy than China, but Americans generally frame it as if control is transferring from some guardian angel to a horned devil.
I'm well aware of the horrors of the Chinese govt, but it's always talked about here as if a fresh new threat has appeared, rather than the source changing from West to East.
Everyone will eventually get some amount of sequencing done, probably multiple times throughout their lives. The vastly more important question in my mind is who's going to do it, and what are their incentives?
With cost-conscious medical professionals, you can bet it will be the lowest bidder, and the lowest bidder will not have your best interests in mind.