Do not release restricted access data without sufficient permissions

carpenterlab / open-science-rules

Collaboratively written manuscript discussing Ten Simple Rules for Enabling Open Science in Biomedical Research

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Do not release restricted access data without sufficient permissions #12

Open gwaybio opened 5 years ago

gwaybio commented 5 years ago

This is a real world problem and one that I am not sure if open science can address. Practitioners definitely need to be aware of ethical (and other) concerns of data access/privacy.

allaway commented 5 years ago

I think this is a great topic to cover. There are open-science friendly solutions that people are thinking about - such as model to data approaches: https://www.nature.com/articles/nbt.4128?draft=collection (I cannot believe that article is behind a paywall, I will have to bug someone about that) or "data visiting": https://ec.europa.eu/jrc/sites/jrcsh/files/2-barend_mons_-_session_ii_-_12.02.2019-my_genome_our_future.pdf