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User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study

User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study

While some scholars believe that we should try to capture such research within existing regulatory frameworks (requiring, for example, ethical review by an Institutional Review Board; IRB) [42], Vayena et al have proposed that existing ethical standards should be applied to the specificities of participant-led health research with alternative mechanisms [16].

Marta Fadda, Anna Jobin, Alessandro Blasimme, Bastian Greshake Tzovaras, Mad Price Ball, Effy Vayena

JMIR Res Protoc 2018;7(11):e10939