The Need for a Legitimate Regulatory Regime in Bioethics: A Global and European Perspective
2013 (English)In: Missouri law review, Vol. 78, no 1, 465-488 p.Article, review/survey (Other academic) Published
Bioethics in global biobanking touches upon several internationally acceptedfundamental rights and values, namely the sample donor's right ofprivacy, the patient's right to health, and - at least implicitly - scientific freedom.From the perspective of fundamental rights, however, there are veryfew internationally applicable rules as to the enforcement of these rights atthe administrative level. Instead, the combination of the practical need forcommon rules and the lack of political will and/or legislative competencewithin the international community or the European Union (EU) seems tohave paved the way for soft law. Further, the role of courts in the area ofbioethics and biobanking, nationally as well as internationally, is limited.The implementation of administrative rules at the national or regional levelsis carried out by research committees and research funding institutions, usuallywith limited or no right to appeal to the general court system. Consequently,the traditional mechanisms of political and judicial control to a largeextent are unavailable. The question raised here is whether the theories connectedto global administrative law can be of any guidance in developing alegitimate regulatory regime for international biobanking. Can principles ofparticipation, transparency, and reasoned decisions be of relevance in this area of law?
Place, publisher, year, edition, pages
School of Law University of Missouri, 2013. Vol. 78, no 1, 465-488 p.
Research subject Administrative Law
IdentifiersURN: urn:nbn:se:uu:diva-218131OAI: oai:DiVA.org:uu-218131DiVA: diva2:694932
FunderSwedish Research Council