This paper explores interdisciplinary approaches to privacy in long-term longitudinal studies of human subjects. Long-term longitudinal studies collect, at multiple points over a long period of time, highly-specific and often sensitive data describing the health, socioeconomic, or behavioral characteristics of human subjects.
The Berkman Klein Center has long been home to a number of cross-disciplinary initiatives that investigate privacy and privacy-relevant questions in the digitally networked environment. We offer research, resources, teaching and learning materials, workshops, and other outputs focused on key privacy issues, aiming to pinpoint novel solutions to privacy problems that reconcile technological, legal, social, political, economic, and behavioral tensions and maximize capacity for innovative and effective uses of data and communications. More recent work in the privacy space includes the Youth and Online Privacy Initiative, the Privacy Tools for Sharing Research Data project, the Transparency Reporting Toolkit, and the Student Privacy Initiative.
Each of our efforts builds upon engagement with and outreach to diverse stakeholders for whom privacy questions are particularly relevant, including educators, policy makers, industry representatives, advocates, and other scholars. This interdisciplinary, multi-stakeholder model empowers our team to surface, identify, and analyze critical emerging questions and challenges, to support efforts to promote and preserve privacy rights, and to design and implement practical systems that allow research findings to benefit society.
|Explore our YouTube page for a selection of talks, interviews, and discussions with academics, practitioners, journalists and others from some of our events and projects that touch on privacy opportunities and concerns.|