Researchers Anne Bowser and Andrea Wiggins surveyed 30 North American participatory research projects–volunteer-driven citizen science and participatory sensing efforts–to understand how well the projects handle privacy design and implementation. The paper appears in the August 2015 issue of the Human Computation Journal.
The study used publicly available policies from the project websites and found that while most projects consider policies and technical designs to protect users, the levels of completeness varied, as did where and how the information was presented. Assessing project policies in greater depth uncovered gaps and discrepancies between intent and implementation.
These observations resulted in a set of Ethical Guidelines for policy and technology design for the projects. Data sharing is considered essential to the operation of these projects, but ensuring users are presented with clear statements and prompts at appropriate points in the participation process is important. The researchers recommended designing policies and tools to support protections of those involved in the research at any level, as well as compliance with legal requirements for protections. The paper contributes a new framework for ethical engagement of volunteers in participatory research, synthesized from the principles of the Belmont Report and guidelines for privacy protections in participatory sensing, with recommendations around Ethical Engagement, Ongoing Assessment, Informed Participation, Evolving Consent, Participant Benefit, Meaningful Choice, and Evolving Choice.