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There's a lot of problems with this perspective, but a very simple pragmatic one is that these data sets depend on volunteer consent, which will be withheld if
by tptacek 10mo ago
There's a lot of problems with this perspective, but a very simple pragmatic one is that these data sets depend on volunteer consent, which will be withheld if people believe their contributed data will be used this way. At the end of the day, human consent is the paramount concern.
- rahimnathwani 10mo agoI was with you until the last sentence. But I went to the ABCD Study web site, and read the article they link about ethical use of data (Responsible use of population neuroscience data: Towards standards of accountability and integrity). I didn't get the impression that consent (for this study or future ones) is the reason they gatekeep the data.
- tptacek 10mo agoIt doesn't really matter whether we agree with the principles in their ethics guide, because they form part of the commitment made with human subjects who participated. If the guidelines said that every scientist handling the data had to do so while wearing a rubber clown nose, that too would bind!
- rahimnathwani 10mo agoHonestly, I haven't dug deep enough to know what commitment was made to the human subjects. The article I mentioned was written only recently (2024): https://pmc.ncbi.nlm.nih.gov/articles/PMC11959870/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11959870/