JMIR Publications

ABSTRACT

Online communication with participants including online recruitment, electronic informed consent and data communication, is one of the fields that information and communication technology (ICT) has been applied to in medical research. It provides various benefits especially for genome research and rare disease research. However, when employing online communication, ethical challenges derived from or exacerbated by it need to be addressed. Here, we aimed to present an overview of such ethical issues and provide a practical guidance for the ethical implementation of ICT. We specified the ethical issues in the context of using online communication for medical research by an analysis based on the eight ethical principles for clinical research. With these results in hand, we then developed a novel framework for the governance of medical research involving ICT which consists of eight categories: five research processes (i.e., design of research, recruitment, informed consent, data communication and dissemination and return of results) and three transversal perspectives which are related to multiple processes of research (i.e., access to research and online dialogue, community involvement and independent review). Finally, we presented a practical guidance chart for researchers, patient partners and independent reviewers. We believe that our study will contribute to the ethical implementation of online communications in medical research.