Applying participatory data governance processes from the health sector to the case of menstruation tracking apps, to empower women* and support the closure of the gender data gap
Judith Faßbender is a PhD student at the University of St Andrews and works on Design Patterns for participatory Data Governance. She is a researcher at the Humboldt Institute for Internet and Society in the research group Public Interest AI, funded by the Ministry of Education and Research. After her bachelor’s degree in design at Burg Giebichenstein Kunsthochschule Halle and Design Academy Eindhoven, she received her master’s degree at Zeppelin University Friedrichshafen where she majored in cultural and communication sciences with a minor in economics. Judith was a visiting lecturer at Köln International School of Design for AI and Design and wrote her master thesis in collaboration with the Fraunhofer Center for Responsible Research and Innovation.
A field in which data driven creative innovations have been developing rapidly in the past years is women’s health and particularly menstruation-cycle tracking apps. Whilst these apps are often regarded positively by users, unsolicited selling of data from these apps to e.g. Facebook are also well-known. At the same time, it has been shown that this data can support health research for women and thereby help to narrow the gender data gap. The tension between the hypersensitivity of the data and a possible consensual use for research, evokes specific requirements for how the data is handled, which regard privacy, transparency, consent regarding access rights and user needs – but primarily the empowerment of users to decide on the use of their personal data. In my research project, I will investigate if the integration of participatory methods in data governance practices can strengthen privacy and the decisive power of users, with regards to sharing/not-sharing data for research.