Ethical Considerations in Pervasive Health Research

The field of pervasive health has matured over the last few decades and the community has begun to converge on commonly accepted practices. In this work, we argue for a need to consider the ethical implications of the choices we make as researchers, particularly when working with vulnerable or sensitive populations. We outline a number of considerations that should be given more attention moving forward. We discuss these considerations as they have emerged from our work with people with rare diseases and with newly diagnosed breast cancer patients, both sensitive communities requiring a careful attention to ethics. We organize these ethical considerations around two main themes: the importance of involving participants in the research process and the need for flexible approaches to both research methods and the design of tools. We provide recommendations for researchers towards a successful, ethical future of pervasive health research.