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"I care deeply about privacy" -- the first line of the article. As someone who works in the space, I find it kind of annoying that we use the word "privacy" to

"I care deeply about privacy" -- the first line of the article. As someone who works in the space, I find it kind of annoying that we use the word "privacy" to mean: asking and following up with tech companies to ensure their opt-out behaviors work as intended. It's like... isn't privacy really about whether you are sharing what you do with people? If you care deeply about privacy, should you be online at all? I get that we might want to encourage online businesses to do a better job implementing the web of privacy laws... but self-labeling as passionate about it just kind of annoys me.

np- 4y ago
> If you care deeply about privacy, should you be online at all? Er I’m not following this logic at all. If you care passionately about something that is at odds with current society, then you are no longer supposed to be part of this society? For example if I fundamentally disagree with capitalism that doesn’t mean I’m somehow absolved of getting a job and paying bills, we are all still human beings with basic needs that need to be met.
mananaysiempre 4y ago
According to the article, the author did not give up their personal info online, they were required by their doctors to provide or decline consent for selling their medical data after physically arriving at the doctor’s office as a prerequisite for obtaining the medical assistance they needed. Unfortunately, the more onerous you make the requirements for handling a type of data, the more the people who need to handle it will tend to outsource that handling to compliance-in-a-box providers whose bona fides they won’t be willing or perhaps even qualified to check, the fewer such providers there will be, and the more incentive the remaining ones will have to pull malicious stunts like this. Less regulation, a free-for-all. More regulation, regulatory capture. I don’t see how you can win here. Simple regulation, stringent enforcement with licence to punish loophole-seekers? A nice thought, but this too tends to evolve towards the BIG BALL OF MUD equilibrium as lawmakers try to improve the situation for one or another constituency, and there’s no counterbalancing force towards simplicity. Or rather there is—things gradually clog up and become less and less effective—but it works on scales far beyond the planning horizon of a legislator or the attention span of a voter. (See: the tax code just about anywhere.)
- orangesite 4y ago
  Historically, a winning practice has been a regulatory environment which discourages certain types of businesses from being established at all. ref: Slave trade, narcotics, gambling, harvesting of body parts etc.
creata 4y ago
If you're suggesting that the author could have avoided all of this by simply not using online services, don't these two lines address that? Emphasis mine: > At both providers, upon my arrival the staff would hand me a tablet made by Phreesia, a company with a roughly $1.7 billion market cap, to check in. and: > A patient seeking a long-awaited appointment with a specialist isn’t going to cancel, even if they are uncomfortable, because getting care is the priority.
ftxbro 4y ago
It looks like people are getting confused by your comment. When you say you are "someone who works in the space" what exactly do you mean? Healthcare, or the tech companies that buy healthcare data, or some kind of patient privacy advocacy role? or even someone who makes the dark patterns? When you say "sharing what you do with people" are you talking about the patient sharing information with their doctor, or are you talking about the hospital sharing patient information with tech companies? This is also unclear "self-labeling as passionate about [privacy] just kind of annoys me". Are you annoyed by patients who are concerned about their privacy? Or are you annoyed by someone whose job is to make the dark patterns and when they say they are 'passionate about privacy' they really mean 'they are passionate about opportunities in the privacy space' and really 'passionate about dark patterns to subvert privacy'?
charles_f 4y ago
Sounds to me like an erudite being disgusted at the luddite's labelling because it somehow lowers the value of their own title. You don't have to work in privacy and know how to label data to have a genuine care about companies not mining you. I care deeply about my health but I'm not a doctor and I sometimes eat chips.

np- 4y ago

> If you care deeply about privacy, should you be online at all? Er I’m not following this logic at all. If you care passionately about something that is at odds with current society, then you are no longer supposed to be part of this society? For example if I fundamentally disagree with capitalism that doesn’t mean I’m somehow absolved of getting a job and paying bills, we are all still human beings with basic needs that need to be met.

mananaysiempre 4y ago

According to the article, the author did not give up their personal info online, they were required by their doctors to provide or decline consent for selling their medical data after physically arriving at the doctor’s office as a prerequisite for obtaining the medical assistance they needed. Unfortunately, the more onerous you make the requirements for handling a type of data, the more the people who need to handle it will tend to outsource that handling to compliance-in-a-box providers whose bona fides they won’t be willing or perhaps even qualified to check, the fewer such providers there will be, and the more incentive the remaining ones will have to pull malicious stunts like this. Less regulation, a free-for-all. More regulation, regulatory capture. I don’t see how you can win here. Simple regulation, stringent enforcement with licence to punish loophole-seekers? A nice thought, but this too tends to evolve towards the BIG BALL OF MUD equilibrium as lawmakers try to improve the situation for one or another constituency, and there’s no counterbalancing force towards simplicity. Or rather there is—things gradually clog up and become less and less effective—but it works on scales far beyond the planning horizon of a legislator or the attention span of a voter. (See: the tax code just about anywhere.)

orangesite 4y ago
Historically, a winning practice has been a regulatory environment which discourages certain types of businesses from being established at all. ref: Slave trade, narcotics, gambling, harvesting of body parts etc.

creata 4y ago

If you're suggesting that the author could have avoided all of this by simply not using online services, don't these two lines address that? Emphasis mine: > At both providers, upon my arrival the staff would hand me a tablet made by Phreesia, a company with a roughly $1.7 billion market cap, to check in. and: > A patient seeking a long-awaited appointment with a specialist isn’t going to cancel, even if they are uncomfortable, because getting care is the priority.

ftxbro 4y ago

It looks like people are getting confused by your comment. When you say you are "someone who works in the space" what exactly do you mean? Healthcare, or the tech companies that buy healthcare data, or some kind of patient privacy advocacy role? or even someone who makes the dark patterns? When you say "sharing what you do with people" are you talking about the patient sharing information with their doctor, or are you talking about the hospital sharing patient information with tech companies? This is also unclear "self-labeling as passionate about [privacy] just kind of annoys me". Are you annoyed by patients who are concerned about their privacy? Or are you annoyed by someone whose job is to make the dark patterns and when they say they are 'passionate about privacy' they really mean 'they are passionate about opportunities in the privacy space' and really 'passionate about dark patterns to subvert privacy'?

charles_f 4y ago

Sounds to me like an erudite being disgusted at the luddite's labelling because it somehow lowers the value of their own title. You don't have to work in privacy and know how to label data to have a genuine care about companies not mining you. I care deeply about my health but I'm not a doctor and I sometimes eat chips.