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.

中文翻译：

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捐赠基因组和其他医学数据的意愿：德国的结果。

本文报告了来自德国参加“您的基因，您说”研究的结果，该研究是全球20多个国家的研究人员之间的共同努力，旨在探讨公众对捐赠基因组和其他个人数据的态度，价值观和观点。供他人使用。根据完成调查的德语版本的德国居民的代表性样本（n = 1506），我们发现，遗传例外论的观点在研究的德语中比在英语中不那么普遍。 （43％对52％）。此外，德语中人们提供其数据以供研究的意愿也比英语中的样本要低（56％比67％）。在德国的样本中，那些更熟悉遗传学的人 持有遗传例外论观点的人比其他人更愿意捐赠数据。我们参考“信息自决权”在德国公共话语中扮演的重要角色来解释这些发现。德国对信息自决权的理解并没有特别严格地解释隐私权，而是赋予了每个公民以认真考虑应如何使用其个人数据保护重要权利的权利。为大众服务。