Comment by beisner | Hacker News Reader

Comment by beisner | Hacker News Reader

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I think I instinctively agree with your argument, although the particulars of this topic have made me wonder a bit about absolute privacy in the human health space. Specifically, we generally consider privacy not to be an absolute right, but to be one moderated by the rights of the public (i.e. if there is reasonable suspicion that you have committed a crime, police are allowed to violate your privacy and conduct searches with a warrant). I wonder at what point this might extend to issues of medical research/public health. We already know that (in the US at least) cases of certain illnesses must be reported to state/federal authorities, which to some degree violates the privacy of the patient. The selection of what sorts of data are shared is somewhat arbitrary; where is the right place to draw the line? If increasing ease of access (and perhaps violating privacy at some level) to millions of health records could bring about the discovery of more-effective predictors for heart disease 10 years faster than without this access, should this trade-off be made? I'm not saying it should, but it makes me wonder where the line should be drawn.

I also recognize that this might be a false binary, that streamlining the process might be orthogonal to maintaining privacy, but for the sake of argument let's assume they are not totally orthogonal.

I agree balancing rights is important. I would argue that the link between more data and curing a disease is too weak to swing the scales. Another major issue is that you'd be violating rights on a major scale. It would be very easy to make a similar argument that, for example, recording everyones communications would stop or significantly reduce crime.

I also don't think it's a debate we really need. More and more people are wearing health tracking devices. There have been research studies done through mobile apps. People are tracking health data themselves more and more and a lot of those people are going to be willing to share it. Let it happen naturally instead of opening the floodgates and leaving people without a choice.

Re. the link between more data and curing disease being weak, I'd argue that's clearly false at the very least regarding how we evaluate disease treatments.

Imagine being able to have 10x more patients for a drug effectiveness study, or being able to look at the entire patient population for adverse drug reactions/interactions. All the datasets we have for this sort of thing are currently pretty poor. Despite this, the FDA mines datasets like the Adverse Events Reports database [1] to identify drugs that are performing poorly. With better, more complete data, the FDA could far more quickly identify adverse drug interactions and drugs that are harming patients more than they are helping.

Medicine is inherently about rare events. Most of us are mostly healthy most of the time. More data by definition helps you find those rare events when someone is sick or are risk. As we start to ask more difficult questions about co-occurring events, cancer detection or genome associations, our statistical tools become powerless to find the weak signals in the data. The only real solution is vastly more data.

[1] https://www.fda.gov/drugs/guidancecomplianceregulatoryinform...

What can an App or a wearable tell you? Is it going to detect a tumor in your colon or your brain like a CAT scan? Can it diagnose you with a genetic disorder like being genotyped?

You cannot only infer everything aspect of health from a single ultrasound scan, which is far more detailed. So what makes you think it would be possible with an App and a heart rate sensor?

I agree mostly with you but I will add that I think that sacrificing privacy for the benefit of the majority is shortsighted in this case. People must be reassured they can talk freely to their doctors (as they do with their lawyers). I think this is way more important for public health than any study that may or may not improve public health.

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