TY - JOUR

T1 - Willingness to donate genomic and other medical data

T2 - results from Germany

AU - Voigt, Torsten H.

AU - Holtz, Verena

AU - Niemiec, Emilia

AU - Howard, Heidi C.

AU - Middleton, Anna

AU - Prainsack, Barbara

N1 - Funding Information: Funding This work was supported by Wellcome grant [206194] paid to AM via Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, and through the personal research fund of BP at King’s College London, which covered the costs of data collection from the German sample. Publisher Copyright: © 2020, The Author(s).

PY - 2020/8/1

Y1 - 2020/8/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85083282296&partnerID=8YFLogxK

U2 - 10.1038/s41431-020-0611-2

DO - 10.1038/s41431-020-0611-2

M3 - Journal article

C2 - 32238912

AN - SCOPUS:85083282296

VL - 28

SP - 1000

EP - 1009

JO - European Journal of Human Genetics

JF - European Journal of Human Genetics

SN - 1018-4813

IS - 8

ER -