Willingness to donate genomic and other medical data: results from Germany

This article published in the European Journal of Human Genetics comes from the Germany arm of the Your DNA, Your Say study, led by Barbara Prainsack
1st April 2020

Abstract

This paper reports findings from Germany-based participants in the “Your DNA, Your Say” study, a collaborative effort among researchers in more than 20 countries across the world to explore public attitudes, values and opinions towards willingness to donate genomic and other personal data for use by others. Based on a representative sample of German residents (n = 1506) who completed the German-language version of the survey, we found that views of genetic exceptionalism were less prevalent in the German-language arm of the study than in the English-language arm (43% versus 52%). Also, people’s willingness to make their data available for research was lower in the German than in the English-language samples of the study (56% versus 67%). In the German sample, those who were more familiar with genetics, and those holding views of genetic exceptionalism were more likely to be willing to donate data than others. We explain these findings with reference to the important role that the “right of informational self-determination” plays in German public discourse. Rather than being a particularly strict interpretation of privacy in the sense of a right to be left alone, the German understanding of informational self-determination bestows on each citizen the responsibility to carefully consider how their personal data should be used to protect important rights and to serve the public good.

Citation:

Torsten HV, Holtz V, Niemiec E, Howard HC, Middleton A, Prainsack B (2020). Willingness to donate genomic and other medical data: results from Germany. European Journal of Human Genetics. Published online ahead of print, 1st April. Available at: https://doi.org/10.1038/s41431-020-0611-2