You have been invited to the following event.
Title: "For-profit companies don’t care about patients’ well-being” Data
and sharing in Germany
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Description: 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 will provide some answers on the basis of the German
Your DNA, Your Say survey.
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.
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Webinar ID: 951 3539 3100
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Webinar ID: 951 3539 3100
When: Wed Nov 10, 2021 4pm – 5pm United Kingdom Time
* lf8(a)sanger.ac.uk - organizer
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