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0 pointsdrcode6y ago0 comments

Well, I think most people in this comments section would say "blanket consent when signing hospital forms is unacceptable and patients should get notified and paid every time someone uses an element of their data".

If that's the standard society wants to adopt, so be it- But it might come at a dramatic cost in slowing down medical innovations. Personally, that seems like a bad tradeoff to me, but who can say for sure?

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JohnFen6y ago

> patients should get notified and paid every time someone uses an element of their data

I don't know about most people here, but I wouldn't say that. Notification or being paid is beside the point. The point is that informed consent should be obtained.

You're right that blanket consent forms don't count as "informed consent" for this sort of thing because they don't actually inform you.

> Personally, that seems like a bad tradeoff to me

Which is fair -- you'd have no problem giving such consent. I, however, would not be willing to give such consent.

I put a lot of effort into reducing the amount of data that Google (and Facebook, Amazon, etc.) can get about me. If/when my medical provider just hands my data over to them, that's a very serious betrayal of trust and undermines my ability to protect myself from those companies.

I find that completely unacceptable, particularly because medical care is not exactly an optional thing.

drcodeOP6y ago

> you'd have no problem giving such consent. I, however, would not be willing to give such consent.

That logic only works if you don't still benefit from the research findings that are obtained from my data. e.g. "tragedy of the commons"

JohnFen6y ago

The benefits are a bit of a red herring here.

What you're proposing is that everyone should be subjected to spying because it may lead to some theoretical larger good. That argument also conveniently ignores the theoretical social and personal costs of that spying.

What I'm saying is that everyone has rights that include the right to not be spied on, and a theoretical larger good is not nearly a solid enough reason to strip me of rights.

Getting consent is a way to avoid this deadlock and make everyone happy as well as ensure that nobody get trampled.

Now, while I would never give Google consent for data collection from me, that's because I have zero trust in Google. However, if we're just talking about consent in the general sense, then it's certainly possible to make an argument that would get me to agree to share data. In fact, I do so with a few entities already.

j / k navigate · click thread line to collapse

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JohnFen6y ago

> patients should get notified and paid every time someone uses an element of their data

I don't know about most people here, but I wouldn't say that. Notification or being paid is beside the point. The point is that informed consent should be obtained.

You're right that blanket consent forms don't count as "informed consent" for this sort of thing because they don't actually inform you.

> Personally, that seems like a bad tradeoff to me

Which is fair -- you'd have no problem giving such consent. I, however, would not be willing to give such consent.

I find that completely unacceptable, particularly because medical care is not exactly an optional thing.

drcodeOP6y ago

> you'd have no problem giving such consent. I, however, would not be willing to give such consent.

That logic only works if you don't still benefit from the research findings that are obtained from my data. e.g. "tragedy of the commons"

JohnFen6y ago

The benefits are a bit of a red herring here.

What I'm saying is that everyone has rights that include the right to not be spied on, and a theoretical larger good is not nearly a solid enough reason to strip me of rights.

Getting consent is a way to avoid this deadlock and make everyone happy as well as ensure that nobody get trampled.

j / k navigate · click thread line to collapse