4 ms·
Decent datasets are very hard to come by, and the political gymnastics required to create and release them is horrible. I'm keen to create a dataset of paediat
by thomasfedb 8y ago
Decent datasets are very hard to come by, and the political gymnastics required to create and release them is horrible.
I'm keen to create a dataset of paediatric physiological data during anaesthesia to help with event detection/preemption but my professor thinks getting permission to do so is all but impossible.
- YayamiOmate 8y agoIt's kinda funny to see how relatively easy is to strip people of their general privacy rights for invigilation but how much pushback is there for medical data and medical purposes. Of course everything can be misused, though I would think that improved healthcare is a much better sellingpoint than being physically hurt by some terrorist actor.
- najarvg 8y agoI empathize. Pediatric consenting presents challenges more accentuated from what we see in adult patients. Generally we have seen (US academic med centers and hem-onc context) that shifting the focus from baseline expectation of privacy to responsible privacy driven research under oversight generally makes many patients willing to share data for research. So your goal is worthy and you should keep pursuing it. The next level ethical question becomes, if your dataset generates a successful clinically validated model to detect adverse events, will you patent and then release into open domain or commercialize it. If you commercialize it, will you share it back with your research participants in anyway? What is the right thing to do? These are all grey areas and one that informatician ethicists need to talk about openly. My 2 cents!