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shared by Régis Barondeau on 11 Aug 12 - No Cached

It’s pretty hard to do anything beyond a gift. It’s more like organ donation, where you don’t get to decide where the organs go. What I’m working on is basically a donation, not a conditional gift.
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people’s attitudes toward risk and benefit change depending on their circumstances. Their own context really affects what they think is risky and what they think isn’t risky.
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I believe that the early data donors are likely to be people for whom there isn’t a lot of risk perceived because the health system already knows that they’re sick. The health system is already denying them coverage, denying their requests for PET scans, denying their requests for access to care. That’s based on actuarial tables, not on their personal data. It’s based on their medical history.
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We would like to see exactly how effective big computational approaches are on health data. The problem is that there are two ways to get there. One is through a set of monopoly companies coming together and working together. That’s how semiconductors work. The other is through an open network approach. There’s not a lot of evidence that things besides these two approaches work. Government intervention is probably not going to work.
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