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As far as data privacy goes, I will say that the sale of health data has some pretty significant upsides--specifically medical research. There's probably a bett
by throwaway894345 5y ago
As far as data privacy goes, I will say that the sale of health data has some pretty significant upsides--specifically medical research. There's probably a better way to get the best of both worlds, but I would hate for us to just pull the rug out from under medical research without a satisfactory backfill.
Disclaimer: I work for a company that uses this data to match terminally ill patients with niche treatments and clinical trials, and the work literally saves and prolongs lives.
- captainoats 5y agoThe article mentions the dispute over wether or not anonymized medical record data really has enough of a signal for meaningful research use cases. That has to be weighed against the privacy concern.
- throwaway894345 5y agoAgreed. To be even more explicit, I'm not saying "do not weigh the research concern against the privacy concern".
- not_jd_salinger 5y ago> I work for a company that uses this data to match terminally ill patients with niche treatments and clinical trials, and the work literally saves and prolongs lives. Talked with a company that made similar claims about what they are doing, but it turns out they were really ensuring that their users where choosing the medication from the highest bidder rather than the one that was really in the the patient's best interests. The mental gymnastics they did to justify they were doing what was in the patient's best interests was fun to observe, but in the end they were just a tool of a large pharmaceutical company, exploiting sick people for profit. Quick cynicism sanity check: who pays your company, your users or the "niche" treatment provider? If it's the former, that sounds like it's good work. If it's the latter I would recommend being a bit more skeptical of the business motives of your employer and their customers.
- throwaway894345 5y ago> Quick cynicism sanity check: who pays your company, your users or the "niche" treatment provider? Insurers. They don’t want to pay for the expensive product.
- sennight 5y agohuh, would that be part of the jewel encrusted platinum insurance plan? Because I've always just assumed that once you started getting into the experimental drug desperation phase - insurance carriers were totally off the hook for the what would otherwise be an infinite increase in their risk exposure. It sure would be nice if there wasn't such a massive asymmetry in pricing data.
- throwaway894345 5y agoWhy are you coming at me like I invented cancer?
- sennight 5y agoWhy are you so sensitive? Unless you are an insurance provider incarnate - nothing I said was critical of you. Now... if I were to being going after you, I'd imagine it would be because of the hamfisted "Making the world a better place, through <insert profit motivated activity here>." You can just want money, it is perfectly natural in a world full priced things, and I don't imagine the self deception is good for you.
- throwaway894345 5y agoThis is just baseless, predictable cynicism, devoid of any understanding of basic economics. Someone is doing good work for society and making money? Insert boilerplate remark about how greedy they must be. Of course, not only is it distinctly possible to contribute to society and make a profit—it’s basically the only way. In the real world loads of researchers and engineers and other employees aren’t going to work for free to appease random Internet cynics (who rarely if ever make positive contributions to society of their own, mind you), so capital is required which entails investors and returns on investment. Yeah, that means insurers or someone else paying money.
- ssss11 5y agoHow about the person being asked if they will provide their data. It’s not hard.
- ska 5y ago> It’s not hard. It's surprisingly hard, which is why there is a cottage industry built up around it for clinical trials. Regardless, getting informed consent for data acquisition is great if you are doing a clinical trial or really looking forward, but for a lot of things you want a ton of retrospective data that can be difficult or impossible to consent. It's a hard problem. I hope in the future it will be an easy problem, but we aren't there.
- loosetypes 5y ago> and the work literally saves and prolongs lives I have literally yet to see a medical-adjacent company not default to assuming they’re on the moral high ground. When I see companies say “we save lives” my initial reaction is no different from companies that say “we hire the best” or laws that “are for the children”.
- throwaway894345 5y agoYeah, I mean it sucks. Investors want returns. Employees want competitive salaries. There’s lots of greed in the world. I don’t have any answers for you, I’m just trying to help really smart people move the needle on this cancer thing and yeah, I like that I get paid competitively.
- loosetypes 5y agoTotally. And I didn’t mean to call you or your company out specifically. Actually sounds interesting. Maps Street View of 1428 Bush St, San Francisco is more of what I have in mind. But maybe I’ve just passed that building one too many times.
- prepend 5y agoSale of ad data has upsides too, greater products and targeted advertising. The greatness is kind of asymmetrical, similar to the scenario you describe. Marketing drugs better isn’t exactly saving lives. Researching drugs should be done through IRB and include patient consent. Of course, there’s great benefit to bypassing ethical controls, but they are still worthwhile.
- bionhoward 5y agoUpside or not, these folks may soon learn they lose more money in fines than they make from their revenues