Local Standards for Anonymization Practices in Health, Wellness, Accessibility, and Aging Research at CHI

Abstract

When studying technologies pertaining to health, wellness, accessibility, and aging, researchers are often required to perform a balancing act between controlling and sharing sensitive data of the people in their studies and protecting the privacy of these participants. If the data can be anonymized and shared, it can boost the impact of the research by facilitating replication and extension. Despite anonymization, data reporting and sharing may lead to re-identification of participants, which can be particularly problematic when the research deals with sensitive topics, such as health. We analyzed 509 CHI papers in the domains of health, wellness, accessibility, and aging to examine data reporting and sharing practices. Our analysis revealed notable patterns and trends regarding the reporting of age, gender, participant types, sample sizes, methodology, ethical considerations, anonymization techniques, and data sharing. Based on our findings, we propose several suggestions for community standards and practices that could facilitate data reporting and sharing while limiting the privacy risks for study participants.