Data Ethics

Project Contributors: 
Jessica Pater
Maia Jacobs
Elizabeth "Beth" Mynatt

In addition to the lab research focused on the use of social media and social technologies in relation to an individual's everyday health is the ethics involved in this type of research. Technology ethics include topics such as privacy, literacy, and research design.

This research is also in collaboration with the PERVADE Team - an NSF-supported collaborative focused on answering pervasive questions such as how do we quantify the risks to individuals and groups in the use of pervasive data, how do people experience the reuse of their personal data and how should existing ethical codes be adapted and adopted for computational research? Jessica serves as a research collaborator to the PERVADE team.

Because of her contributions to the HCI community in this space, Jessica has been selected to serve on the ACM SIGCHI Ethics committee starting this summer.

Related Publications: 

Selection Biases in Technology-based Intervention Research: Patients’ Technology Use Relates to Both Demographic and Health-related Inequities

Toscos, T., Drouin, M.,Pater, J.A., Flanagan, M., Pfafman, R., Mirro, M. 2019. Selection Biases in Technology-based Intervention Research: Patients’ Technology Use Relates to Both Demographic and Health-related Inequities . JAMIA. 26(8-9): 835-839. [pdf]

”Notjustgirls”: Explor-ing male-related eating disordered content across social media platforms

Pater, J.A., Reining, L.E., Miller, A.D., Toscos, T., and Mynatt, E.D. 2019. “Notjustgirls”: Exploring Male-related Eating Disordered Content across Social Media Platforms. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI ’19). Association for Computing Machinery, New York, NY, USA, Paper 651, 1–13. [pdf]

Conducting Research with Stigmatized Populations: Practices, Challenges, and Lessons Learned

Maestre, J.F., Eikey, E.V., Warner, M., Yarosh, S., Pater, J.A., Jacobs, M., Marcu, G., and Shih, P.C. 2018. Conducting Research with Stigmatized Populations: Practices, Challenges, and Lessons Learned. In Companion of the 2018 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW ’18). Association for Computing Machinery, New York, NY, USA, 385–392. [pdf]

Research Ethics Town Hall Meeting

Pernille, B., Fiesler, C., Muller, M., Pater, J., Wisniewski, P. Research Ethics Town Hall Meeting.2018. In Proceedings of the 2018 ACM Conference on Supporting Groupwork (GROUP ’18). Association for Computing Machinery, New York, NY, USA, 393–396. [pdf]

Ethical considerations in pervasive health research

MacLeod, Haley, Maia Jacobs, Katie Siek, Kay Connelly, and Elizabeth D. Mynatt. Ethical considerations in pervasive health research. In Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare, pp. 326-329. ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), 2016.

Challenges and Futures for Ethical Social Media Research

Fiesler, C., Pater, J., Hoffmann, A.L., Proferes, N. Challenges and Futures for Ethical Social Media Research .10th International AAAI Conference on Web and Social Media – ICWSM. Cologne, Germany, July 2016.