5 ms·

The health+ML space is in a real ethical quandary right now, because at some level it's in all of our interests to have machine learning algos run against large

by drcode 8y ago

The health+ML space is in a real ethical quandary right now, because at some level it's in all of our interests to have machine learning algos run against large patient data sets. I'm guessing that 100 years from now people will look down on us for not solving this coordination problem faster, and using all of the medical data we've collected to accelerate progress on disease research... ...but how do we do it without also transforming into a distopia of "radical transparency"?

013a 8y ago
I tend to believe that it isn't a problem with the core idea or philosophy of privacy (and I'm an intensely staunch privacy advocate). I believe it's a problem with Google. Or more generally, any company which has any financial incentive to use data in ways that the customer does not expect. It's about the human responsibility on the receiving end of the data, and Google is a Bad Seed. With the Apple Watch, Apple partnered with Stanford for a heart study to identity a-fib using smartwatch-sourced heart rate data. They attracted 400,000 participants. [1] I would guess that exactly zero of these participants feel cheated by their participation in this study (so far). Why? It's the same general concept as this DeepMind stuff. I'd argue its three things: clear, precise, & opt-in consent of the data shared, clear & constrained explanation of its usage, and trust in the receiving parties. Apple and Stanford have these three things in spades. Google is incapable of all of them, and you can't Design or Buy your way through corporate culture and customer trust. They gather and correlate so much data, their consent process is far from precise or opt-in. Once they have the data, they have a history of using it for Whatever they want. Which all ties back to trust; Google has permanently ruined any trust customers would have toward them for things that Actually Matter. Point being, other companies can pick up this mantle. It won't be Google. And if you're a health-focused company, joining Google is a literal death sentence for your product. You'll end up prototyping something amazing, then be completely incapable of deploying it for any public good because no one will give you data. [1] http://fortune.com/2018/11/02/stanford-apple-watch-heart-study/ http://fortune.com/2018/11/02/stanford-apple-watch-heart-stu...
- gowld 8y ago
  Who doesn't have an incentive to misuse data? A company can sell it to advertisers. A government can use it to run a genocide. An individual can use it for blackmail. Who's left?
  - 013a 8y ago
    Who doesn't have an incentive to mug someone on the street? So, what stops them? Morality. Law. Responsibility. Reputation. All of this applies to companies. Morality comes from shared culture and values. Laws like GDPR help. Reputation is a huge one; if companies want any sort of meaningful enterprise contracts, especially with PII/PHI, data privacy and security is paramount.
deleted 8y ago
[deleted]
vharuck 8y ago
Why not get subjects' consent for each study? Don't a lot of health organizations already do this?

by drcode 8y ago

013a 8y ago

I tend to believe that it isn't a problem with the core idea or philosophy of privacy (and I'm an intensely staunch privacy advocate). I believe it's a problem with Google. Or more generally, any company which has any financial incentive to use data in ways that the customer does not expect. It's about the human responsibility on the receiving end of the data, and Google is a Bad Seed. With the Apple Watch, Apple partnered with Stanford for a heart study to identity a-fib using smartwatch-sourced heart rate data. They attracted 400,000 participants. [1] I would guess that exactly zero of these participants feel cheated by their participation in this study (so far). Why? It's the same general concept as this DeepMind stuff. I'd argue its three things: clear, precise, & opt-in consent of the data shared, clear & constrained explanation of its usage, and trust in the receiving parties. Apple and Stanford have these three things in spades. Google is incapable of all of them, and you can't Design or Buy your way through corporate culture and customer trust. They gather and correlate so much data, their consent process is far from precise or opt-in. Once they have the data, they have a history of using it for Whatever they want. Which all ties back to trust; Google has permanently ruined any trust customers would have toward them for things that Actually Matter. Point being, other companies can pick up this mantle. It won't be Google. And if you're a health-focused company, joining Google is a literal death sentence for your product. You'll end up prototyping something amazing, then be completely incapable of deploying it for any public good because no one will give you data. [1] http://fortune.com/2018/11/02/stanford-apple-watch-heart-study/ http://fortune.com/2018/11/02/stanford-apple-watch-heart-stu...

gowld 8y ago
Who doesn't have an incentive to misuse data? A company can sell it to advertisers. A government can use it to run a genocide. An individual can use it for blackmail. Who's left?
- 013a 8y ago
  Who doesn't have an incentive to mug someone on the street? So, what stops them? Morality. Law. Responsibility. Reputation. All of this applies to companies. Morality comes from shared culture and values. Laws like GDPR help. Reputation is a huge one; if companies want any sort of meaningful enterprise contracts, especially with PII/PHI, data privacy and security is paramount.

deleted 8y ago

[deleted]

vharuck 8y ago

Why not get subjects' consent for each study? Don't a lot of health organizations already do this?