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Privacy Laws and Biobanking in Germany
1Nils Hoppe, Dr.iur., LL.B., is a professor of life sciences regulation at the Centre for Ethics and Law in the Life Sciences (CELLS) at the University of Hannover, and an associate member of Coram Chambers in London. His research focus is on governance structures and regulatory issues in large-scale biobanking and genetic databases, in particular in connection with property rights.
Abstract:
While the possibility of enacting a sui generis Biobank Act has been debated in Germany at great length, as of yet the country has not implemented any biobankspecific legislation. Instead, oversight is available via a network of research and privacy laws, including those of the European Union. The Nationale Kohorte, Germany's large-scale, population-based epidemiological research biobank, is funded by the Federal Ministry of Education and Research, and there are currently 108 registered bio-banks throughout Germany. The current system, including the structure and study design of the Nationale Kohorte, privileges the protection of personal information even at the cost of socially desirable research; it remains to be seen if forthcoming legislation will shift this balance.
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