External publications

Human subjects, digital protocols: the future of institutional review boards (IRBs) and digital research in vulnerable communities

Martin-Shields, Charles / al Achkar, Ziad
External Publications (2023)

in: Colette Mazucelli / James Felton Keith / C. Ann Hollifeld (eds.), Personal data collection risks in a post-vaccine world, New York: Anthem Press, 25-47

Information

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. While these standards are 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.