No Humans Here: Ethical Speculation on Public Data, Unintended Consequences, and the Limits of Institutional Review
Proceedings of the ACM on Human-Computer Interaction
Many research communities routinely conduct activities that fall outside the bounds of traditional human subjects research, yet still frequently rely on the determinations of institutional review boards (IRBs) or similar regulatory bodies to scope ethical decision-making. Presented as a U.S. university-based fictional memo describing a post-hoc IRB review of a research study about social media and public health, this design fiction draws inspiration from current debates and uncertainties in the HCI and social computing communities around issues such as the use of public data, privacy, open science, and unintended consequences, in order to highlight the limitations of regulatory bodies as arbiters of ethics and the importance of forward-thinking ethical considerations from researchers and research communities.
Free Full Text available through Link