Publications of Bárd, P.

Law, ethics and medicine The case of biobank with the law: between a legal and scientific fiction

According to estimates more than 400 biobanks currently operate across Europe. The term ‘biobank’ indicates a specific field of genetic study that has quietly developed without any significant critical reflection across European societies. Although scientists now routinely use this phrase, the wider public is still confused when the word ‘bank’ is being connected with the collection of their biological samples. There is a striking lack of knowledge of this field. In the recent Eurobarometer survey it was demonstrated that even in 2010 two-thirds of the respondents had never even heard about biobanks. The term gives the impression that a systematic collection of biological samples can constitute a ‘bank’ of considerable financial worth, where the biological samples, which are insignificant in isolation but are valuable as a collection, can be preserved, analysed and put to ‘profitable use’. By studying the practices of the numerous already existing biobanks, the authors address the following questions: to what extent does the term ‘biobank’ reflect the normative concept of using biological samples for the purposes of biomedical research? Furthermore, is it in harmony with the so far agreed legal–ethical consensus in Europe or does it deliberately pull science to the territory of a new, ambiguous commercial field? In other words, do biobanks constitute a medico-legal fiction or are they substantively different from other biomedical research protocols on human tissues?

The German Anti-Discrimination Legislation with a Special Focus on Disability

The present essay discusses the recently adopted Act on Anti-Discrimination and the current and future system of disability rights protection mechanisms in the Federal Republic of Germany. Partly as a response to the atrocities of World War II, partly as a return to pre-war period, both East- and West-Germany adopted extensive disability-related protection mechanisms. The laws currently in force are following this tradition making the system of German disability rights one of the most progressive in Europe. Several pieces of legislation ensure rehabilitation and participation of disabled persons, moreover Germany's constitution has been amended, so that disability is included among the prohibited grounds of the clause on non-discrimination. Most recently, Germany should have implemented the European Union's Framework Directive the scope of which extends to the prohibition of discrimination on grounds of disability in employment matters. Germany, traditionally so cautious about human rights issues, transposed the Directive with a two-year-delay. The paper scrutinizes the implementing national law and explores the reasons for its numerous failures and the way towards adoption. Various legal and constitutional issues, among others on third party effect, freedom and equality had been brought up in the debate around transposition that had not been addressed at the time the German disability-related laws had been adopted. The study of these controversies around implementation of the EU Directive is a unique opportunity to shed some light on the underlying constitutional issues of anti-discrimination laws-not only in Germany, but in all Member States of the Union which implemented the Directive without any public, political or legal debates.