“For-profit companies don’t care about patients’ well-being” Data and sharing in Germany

On average, Germans seem less willing to donate their medical and DNA data than residents of other countries. Why is this? Torsten Voigt and Barbara Prainsack, our German collaborators on the global Your DNA, Your Say project, provided some answers on the basis of the German data from the survey.
10th November 2021

We were honoured to host Barbara Prainsack and Torsten Voigt for the fourth installment of our SER Seminar Series focusing on findings from the Your DNA, Your Say study

An earlier paper from the YDYS study reported that residents of Germany were less willing to make their data available for research than people in English speaking countries. New data analysis by Torsten H. Voigt and Barbara Prainsack shows that the reasons for this are strongly related to concerns about disproportionate commercial profits, and asymmetries in benefits for corporate actors v. citizens and patients. Findings from the German YDYS data thus underscore the need to think about privacy and autonomy not merely (and perhaps not even primarily) as individual rights and interests but as collective concerns. Rather than asking “What is in it for me”, most people’s concerns regarding data sharing seem to be related to the question of “What kind of society do we want?”

Torsten H. Voigt is the Managing Director of the Institute of Sociology and the Chair of the Technology and Diversity Program at RWTH Aachen University.

Barbara Prainsack is the Head of Department of Political Science, and the Director of the interdisciplinary Research Platform Governance of Digital Practices, at the University of Vienna.

Watch the full seminar here:

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Citation:

Prainsack B, Voigt T (2021). “For-profit companies don’t care about patients’ well-being” Data and sharing in Germany. A part of the Engagement and Society Research Seminar Webinar Series. 10 November. Online