The Force of Law: Genetic Data Protection in Central and Eastern Europe

Authors

  • Petra Bard

Keywords:

Biobanks, genebanks, data protection, forensic genetics, Central and Eastern Europe

Abstract

During the past decade the collection and processing of human biological samples and that of
related data gained an increasingly important role in both medical research and the forensic
field. The European Union legislator tried to keep up with this phenomenon, and attempted
to reconcile freedom of research in the classical biobank context and the principle of availability
in the criminal context with European Union-wide data protection safeguards. In
the lack of a sufficiently homogeneous legal framework European jurisdictions greatly differ
in regulating the protection of genetic data. Two main country groups can be identified:
Member States can be grouped along the question whether they have or do not have specific
biobank laws. In countries that do have such laws, comparison is easier, and they are following
international standards. Whenever such specific laws are lacking, not only the identification
of the respective legal rules, but also their comparison is difficult, since the interpretation of
these vague and more general laws is left to the stakeholders, law enforcement agencies, and
finally to the judiciary. Since in this latter group of countries however relevant judicial cases
are very rare, the interpretation of the codes and other comprehensive laws happens on an
ad hoc basis, and remains invisible. The differing legal and ethical issues concerning patients’
data in the classical context, and suspects’, convicts’, victims’ and other persons’ data protection
in a forensic context will be addressed in light of the 2003 International Declaration on
Human Genetic Data. Actual examples from Central European jurisdictions will highlight
the related theoretical and practical problems both in terms of bioethical research and forensic
sciences on the one hand and data protection and privacy on the other.

Published

2010-05-15