Willingness to donate genomic and other medical data: results from Germany
Open Access
- 1 April 2020
- journal article
- research article
- Published by Springer Science and Business Media LLC in European Journal of Human Genetics
- Vol. 28 (8), 1000-1009
- https://doi.org/10.1038/s41431-020-0611-2
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.Funding Information
- King's College London (n/a)
This publication has 17 references indexed in Scilit:
- 'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methodsPersonalized Medicine, 2018
- German law allows use of DNA to predict suspects' looksScience, 2018
- Society and personal genome dataHuman Molecular Genetics, 2018
- Broad consent for health care–embedded biobanking: understanding and reasons to donate in a large patient sampleGenetics in Medicine, 2018
- Finding the Missing Link for Big Biomedical DataJAMA, 2014
- Why Big Data Won't Cure UsBig Data, 2013
- The Privacy-Reciprocity Connection in Biobanking: Comparing German with UK StrategiesPublic Health Genomics, 2012
- Data protection in Germany I: The population census decision and the right to informational self-determinationComputer Law & Security Review, 2009
- Attitudes Toward Genetic Testing in a German PopulationGenetic Testing and Molecular Biomarkers, 2009
- Germans mix support and scepticism for genetic engineeringNature, 1998