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#130036

Kristan Kang
Member

I strongly agree with the sentiment of Simon’s comment, and Sarah’s reminder that the aim of the WG is to establish guidelines, not infrastructure.

To those in the WG frustrated by the delays that buracracy cause in sharing and accessing data – I understand this as I dealt with it for over a decade, so I support making the buracratic process as efficient as possible. However this should not be at the stake of the moral and legal principles that underpin the IRB/ethics-review process and researchers should not take it onto themselves to temporarily suspend the legal and ethical requirement to respect individuals’ right to privacy as they see fit. This would not only be damaging for health research everywhere, but would also put those researchers on dangerous footing with their employers and the law.