Introduction: New Pedagogy for Digital Human Subjects Research

Ethics in human subjects research, whether in medical or social sciences, has been a key topic in researchers’ training for decades in the United States and United Kingdom (UK). In the United States, the history of IRBs in evaluating and overseeing the conduct of ethical human subjects research has its roots in legislation. The 1974 National Research Act was signed into law after a series of congressional hearings on human subjects research and gained greater momentum in response to the Tuskegee syphilis study (Chadwick, 1997). In the UK the processes have been more decentralised with research ethics committees distributed across research sectors and universities, but since the early 2000s there have been greater efforts to develop national standards for both biomedical and social science human subjects research in the UK. While these standards are world leading, world-leading, and many developing countries are adopting their own human subjects research frameworks based on them, the advent of widespread digital data collection presents new challenges for researchers and educators to address in ethics and research protocol pedagogy. This is especially true when research is being done in and with vulnerable subjects in developing countries.

How we address this question has implications for general society as well as academic research. Complex power relations emerge in this space between a university’s IRB’s conception of ethical human subjects research and a technology’s terms of use, including those between the researcher and participant, and the researcher and software company. As the nature of research adapts and incorporates technological changes, the IRB will increasingly be the facility that mediates the power of different actors in a digital human subjects research process to make sure research participants are protected.

Increasingly, the interface between digital research and peoples’ daily online behaviour is blurring. When we, for example, use Twitter, it is possible that this mundane activity is producing data that can be used by a researcher. This type of relationship would be governed by a platform’s terms of use, to which a researcher who uses Twitter or social media data must conform.