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I've seen a ton of responses from people in the industry along the lines of "this is normal" or similar. People who work on this stuff are incredulous that ther

by CPLX 7y ago

I've seen a ton of responses from people in the industry along the lines of "this is normal" or similar. People who work on this stuff are incredulous that there's even an issue, since everyone's health info is already being uploaded to AWS or something. This is business as usual, they say. The uproar is taken by people actually working in the business as a sign that the public are ignorant and misinformed. Things are actually HIPPA compliant, they say. This isn't a big deal, they say. But perhaps the education should be going in the other direction, and the people in the industry should realize they are the ignorant ones for realizing that this is totally not OK for a huge number of people. Realize that we are absolutely horrified that this data is being shared, that a reasonable response is to say that if HIPPA is OK with this then we need stronger laws, that we don't want faceless algorithms studying our most intimate personal and medical issues at companies we never had a relationship with. And, especially, we are absolutely fucking certain that we want literally none of it to be seen by employees of the sociopathic tech companies that are surveilling every aspect of our life in order to better manipulate politics, markets, and our society. The thing to take away here is that people are shocked and horrified at what's apparently business as usual.

trebligdivad 7y ago
But if they're just using Google as cloud storage/compute it's not being shared. Only very few Google employees would have access, they'd have very careful limitations and access on who accessed what - that's not the same as giving to google for some big AI experiment.
- inetknght 7y ago
  > Only very few Google employees would have access That's "very few" Google employees more than zero. I expect zero Google employees to have access to my medical data. Any number above zero is absolutely not acceptable to me. > they'd have very careful limitations and access on who accessed what Yeah, just like Equifax, right?
  - kazen44 7y ago
    > That's "very few" Google employees more than zero. I expect zero Google employees to have access to my medical data. Any number above zero is absolutely not acceptable to me. Heck, people owning my medical data who are not my doctor/GP and related medical professionals is a big no go in my opinion. Medical data is rather private.
    - inetknght 7y ago
      > Heck, people owning my medical data who are not my doctor/GP and related medical professionals is a big no go in my opinion. Not even "owning", but having. Having even "anonymized" data is not acceptable to me.
raxxorrax 7y ago
I share that perception. For me, this is a sign that people working with the data, probably should not work with this data. They don't really make a good case. And saying this is business as usual is extremely disingenuous, since the distribution of information was completely different just a few years ago.
UncleMeat 7y ago
One of the challenges is how do you distinguish the kinds of outrage? It seems to me like the majority of outrage is based on falsehood (Ascension is selling data to Google to use for ads). Then there are some people where the very idea of medical data being managed by cloud providers is unacceptable. The presence of the first shadows the latter and makes the whole thing come across as misinformed.
inetknght 7y ago
> Realize that we are absolutely horrified that this data is being shared, that a reasonable response is to say that if HIPPA is OK with this then we need stronger laws, that we don't want faceless algorithms studying our most intimate personal and medical issues at companies we never had a relationship with. I absolutely 150% agree with you and I know others off of HN who do as well.
peterwwillis 7y ago
> we don't want faceless algorithms studying our most intimate personal and medical issues So you don't want an advanced algorithm to analyze your vitals and detect your cancer at an early stage? Technology has more than doubled our life expectancy. More technology could do even more so. The fact that it's a faceless algorithm, and not a creepy biased human, should be a comfort. But you're reacting like this is all going to harm you, when it's way more likely to do the opposite. > we are absolutely horrified that this data is being shared People always fear the things they don't understand. That doesn't mean that fear is justified, by a long shot.
- CPLX 7y ago
  > So you don't want an advanced algorithm to analyze your vitals and detect your cancer at an early stage? That’s correct, I don’t want that. And if one day I change my mind and make the choice to opt-in to a system that works like that, I still won’t ever want Google to be involved in it.
  - blacksmith_tb 7y ago
    Given that early detection increases chances of survival[1] considerably, you may not have a chance to opt-in later. Which raises interesting questions about whether society might force you to participate in having your data analyzed, similar to say, vaccinating. 1: https://www.canaryfoundation.org/wp-content/uploads/EarlyDetectionFactSheet.pdf https://www.canaryfoundation.org/wp-content/uploads/EarlyDet...
  - peterwwillis 7y ago
    Oh, I see. A brand's values and reputation, as well as your own personal choices, are more important to you than your health.

by CPLX 7y ago

trebligdivad 7y ago

But if they're just using Google as cloud storage/compute it's not being shared. Only very few Google employees would have access, they'd have very careful limitations and access on who accessed what - that's not the same as giving to google for some big AI experiment.

inetknght 7y ago
> Only very few Google employees would have access That's "very few" Google employees more than zero. I expect zero Google employees to have access to my medical data. Any number above zero is absolutely not acceptable to me. > they'd have very careful limitations and access on who accessed what Yeah, just like Equifax, right?
- kazen44 7y ago
  > That's "very few" Google employees more than zero. I expect zero Google employees to have access to my medical data. Any number above zero is absolutely not acceptable to me. Heck, people owning my medical data who are not my doctor/GP and related medical professionals is a big no go in my opinion. Medical data is rather private.
  - inetknght 7y ago
    > Heck, people owning my medical data who are not my doctor/GP and related medical professionals is a big no go in my opinion. Not even "owning", but having. Having even "anonymized" data is not acceptable to me.

raxxorrax 7y ago

I share that perception. For me, this is a sign that people working with the data, probably should not work with this data. They don't really make a good case. And saying this is business as usual is extremely disingenuous, since the distribution of information was completely different just a few years ago.

UncleMeat 7y ago

One of the challenges is how do you distinguish the kinds of outrage? It seems to me like the majority of outrage is based on falsehood (Ascension is selling data to Google to use for ads). Then there are some people where the very idea of medical data being managed by cloud providers is unacceptable. The presence of the first shadows the latter and makes the whole thing come across as misinformed.

inetknght 7y ago

> Realize that we are absolutely horrified that this data is being shared, that a reasonable response is to say that if HIPPA is OK with this then we need stronger laws, that we don't want faceless algorithms studying our most intimate personal and medical issues at companies we never had a relationship with. I absolutely 150% agree with you and I know others off of HN who do as well.

peterwwillis 7y ago

> we don't want faceless algorithms studying our most intimate personal and medical issues So you don't want an advanced algorithm to analyze your vitals and detect your cancer at an early stage? Technology has more than doubled our life expectancy. More technology could do even more so. The fact that it's a faceless algorithm, and not a creepy biased human, should be a comfort. But you're reacting like this is all going to harm you, when it's way more likely to do the opposite. > we are absolutely horrified that this data is being shared People always fear the things they don't understand. That doesn't mean that fear is justified, by a long shot.

CPLX 7y ago
> So you don't want an advanced algorithm to analyze your vitals and detect your cancer at an early stage? That’s correct, I don’t want that. And if one day I change my mind and make the choice to opt-in to a system that works like that, I still won’t ever want Google to be involved in it.
- blacksmith_tb 7y ago
  Given that early detection increases chances of survival[1] considerably, you may not have a chance to opt-in later. Which raises interesting questions about whether society might force you to participate in having your data analyzed, similar to say, vaccinating. 1: https://www.canaryfoundation.org/wp-content/uploads/EarlyDetectionFactSheet.pdf https://www.canaryfoundation.org/wp-content/uploads/EarlyDet...
- peterwwillis 7y ago
  Oh, I see. A brand's values and reputation, as well as your own personal choices, are more important to you than your health.