In this paper we argue for the position that responsible safeguards for privacy and ethical treatment of human data are of vital importance to retain the public confidence and trust that is necessary for the development and future success of internet mediated research (IMR). We support our position based on the high level of popular and media attention that is currently directed at IMR, which in combination with the relative uncertainties that still exist around the ethics of various IMR methods, raises the risk that IMR might succumb to a public backlash of similar proportions to the controversy that hit genetically modified (GM) crops in Europe. Based on the lessons that came out of the GM crops controversy we discuss the ethics requirements and challenges that must be met in order to retain the public trust in IMR. We end our argument by briefly reviewing a couple of examples of “privacy protecting architectures” that are being developed for IMR.
Koene, A., Perez, E., Carter, C. J., Statache, R., Adolphs, S., O’Malley, C., …McAuley, D. (2015). Research ethics and public trust, preconditions for continued growth of internet mediated research: public confidence in internet mediate research