4 ms·

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 i

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.

jostmey 9y ago
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?
entee 9y ago
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/guidancecomplianceregulatoryinformation/surveillance/adversedrugeffects/ucm082193.htm https://www.fda.gov/drugs/guidancecomplianceregulatoryinform...

jostmey 9y ago

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?

entee 9y ago

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/guidancecomplianceregulatoryinformation/surveillance/adversedrugeffects/ucm082193.htm https://www.fda.gov/drugs/guidancecomplianceregulatoryinform...