I empathize. Pediatric consenting presents challenges more accentuated from what we see in adult patients. Generally we have seen (US academic med centers and h

I 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!