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If a company can't 'innovate' without sharing users' data with third parties or treating it recklessly through lax security (or uploading database dumps to publicly-accessible S3 buckets) then that company doesn't deserve to be in business. It doesn't take a suite of lawyers to enforce that, either. Health care is gigantic mess of bullshit in the US especially, because of the multiple different 'stakeholders' - customers, insurance companies, brokers, "networks", hospitals, doctors, etc., and every mistake is a gigantic lawsuit waiting to happen. It's a disaster however you cut it. As for personal data for some arbitrary startup, any argument that "innovation" depends on being able to be careless or cavalier with that data is just ridiculous. Be careful with it. Store it properly. Only collect what you need, and delete the rest. Expunge data you no longer need. Never send it to any third party without asking the user, and provide clear information about where and with whom the data is processed and stored at rest. There, now you're being careful with user data and you can still "innovate" decent products, as long as your business model isn't user-hostile from the start. |
The problem they point out is that well intentioned businesspeople who want to provide you a useful service and store your data correctly are priced out.
If you want to deal with medical data of any kind, you need a lawyer. Full stop. It doesn't matter how good your intentions are, or how many "best practice" blog posts you follow. You need to hire a lawyer, and lawyers are incredibly expensive.
> Be careful with it. Store it properly. Only collect what you need, and delete the rest.
This is great advice, but that's not how laws work. Congress won't pass a law that says "store it properly". They are going to pass a law that describes how you can and cannot store data in 600+ pages of legalese. And no matter how properly you think you're doing things, you have to have a lawyer to know you're actually doing it properly.
Said another way: regulation always adds cost and barriers to entry. These affect the "good" business just as much as the "bad" business.