Bio

Kirsten Ostherr, PhD, MPH is the Gladys Louise Fox Professor of English at Rice University in Houston, Texas, where she is a media scholar, health researcher, and technology analyst. She is founder and director of the Medical Humanities program (2016-present) and the Medical Futures Lab (2012-present). Her research on trust and privacy in digital health ecosystems has been featured in Slate, The Washington Post, Big Data & Society, and Catalyst. Kirsten is the author of Medical Visions: Producing the Patient through Film, Television and Imaging Technologies (Oxford, 2013) and Cinematic Prophylaxis: Globalization and Contagion in the Discourse of World Health (Duke, 2005). She is editor of Applied Media Studies (Routledge, 2018), and co-editor of Science/Animation, a special issue of the journal Discourse (2016). Kirsten is currently writing a book called How Patients Became Data: The Ethics of Mining Personal Health Information.

Project

While I am at Faber, I will work on a book-length manuscript called How Patients Became Data: The Ethics of Mining Personal Health Information. The risks of unregulated personal health data mining are particularly acute for populations with histories of harms as a result of surveillance practices by health organizations. This project will use theoretical, historical, and empirical methods to fill a critical scholarly gap in research on the ethics of personal health data surveillance. I will develop three theoretical concepts – health datafication, the metaclinical ecosystem, and digital biomarkers – to contribute a novel historical perspective on the legacies of mistrust that shape contemporary attitudes toward data sharing among previously marginalized communities.