4 ms·

Dude, it is not a "contribution", it is a black-box partnership. I will give up my data for "research" as long as I am 100% certain that my medical information

Dude, it is not a "contribution", it is a black-box partnership. I will give up my data for "research" as long as I am 100% certain that my medical information will not be abused in a way that can harm me or others. Until code is routinely audited and conforms to a strict code of ethics, you can count me out. If you think it is "unfair", consider my position: I have a rare disease that has case reports and (small) cohorts at best in the literature. Publications on it are sparse. Since I can be re-identified with literally zero effort, due to a lack of ethics of the STEM community, I have a target on my back. I want to stay alive, and not be targeted by insurance companies and/or the medical-industrial complex. Sorry, but if people want to benefit from me, then don't force unethical experimentation on me and others via big data and the wide sharing of that data.

noir_lord 7y ago
Same boat, same reasons. I opted out of EHCR here (apparently I was one of the very few who did from a conversation with my GP receptionist) because I simply don't trust "It'll save us money" as a reason (I also don't trust my gov to be competent).
- deleted 7y ago
  [deleted]
amelius 7y ago
Can't we have better separation of interests? E.g. Google provides hardware and software. Mayo clinic runs the hardware and software, while Google sees none of the data?
- adamredwoods 7y ago
  I think this is Google's attempt to break into EHR, where Epic Systems is a leader, but has years more experience in maintaining confidential information. But you're right, Google is a marketing, search, and advertising GIANT. Even if they stay HIPAA compliant, I would want to see more deliberate separation of interest.
landryraccoon 7y ago
I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? I worry that one tradeoff of more privacy and less trust is that researchers won’t get the information they need to produce cures and treatments. It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.
- TeMPOraL 7y ago
  > I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? You have data sharers to blame for that. They're the ones that are destroying possible cooperation (everyone with that condition sharing data). > It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely. Indeed, and I think the way to solve it is to go after the leakers and the sharers and the "entrepreneurs". If I give my data for medical research, I mean bona fide research, as in scientists and labs and tax-funded scientific papers, and not "research" into lowering operational costs by selling data, or "research" done by startups partnering with the clinic.

noir_lord 7y ago

Same boat, same reasons. I opted out of EHCR here (apparently I was one of the very few who did from a conversation with my GP receptionist) because I simply don't trust "It'll save us money" as a reason (I also don't trust my gov to be competent).

deleted 7y ago
[deleted]

amelius 7y ago

Can't we have better separation of interests? E.g. Google provides hardware and software. Mayo clinic runs the hardware and software, while Google sees none of the data?

adamredwoods 7y ago
I think this is Google's attempt to break into EHR, where Epic Systems is a leader, but has years more experience in maintaining confidential information. But you're right, Google is a marketing, search, and advertising GIANT. Even if they stay HIPAA compliant, I would want to see more deliberate separation of interest.

landryraccoon 7y ago

I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? I worry that one tradeoff of more privacy and less trust is that researchers won’t get the information they need to produce cures and treatments. It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.

TeMPOraL 7y ago
> I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? You have data sharers to blame for that. They're the ones that are destroying possible cooperation (everyone with that condition sharing data). > It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely. Indeed, and I think the way to solve it is to go after the leakers and the sharers and the "entrepreneurs". If I give my data for medical research, I mean bona fide research, as in scientists and labs and tax-funded scientific papers, and not "research" into lowering operational costs by selling data, or "research" done by startups partnering with the clinic.