Data Donation as a Model for Citizen Science Health Research

Abstract

New computational and sensing innovations, coupled with increasingly affordable access to consumer health technologies, allow individuals to generate personal health information that they are then able to submit to a shared archive or repository. This paper presents data donation as a model for health-focused citizen science, with special attention to the ethical challenges and opportunities that this model presents. We also highlight some existing data donation projects curated by citizen scientists. After describing data donation in more detail, including its relationship to movements like the Quantified Self and research in personalized medicine, we report findings from the Health Data Exploration (HDE) Project’s second annual Network Meeting, which was focused on data donation. These findings include identification of four challenges for the ethical conduct of health-focused data donation research: Participant protection, representativeness, incentives to participate, and governance. We use these insights as a springboard for further discussion of specific issues, pointing both to the current state of the field and our suggestions about potential pathways for addressing some of the challenges.

Keywords

• citizen science
• data donation
• informed consent
• data access
• privacy
• data governance