Centre for Research Ethics & Bioethics (CRB)

Information and law in transition

2015-06-02

New information and communication technologies have created exciting new possibilities for connecting individuals across borders and continents but also significant legal, ethical and political concerns.

A number of prominent scholars from Europe and North America analyze the developments of information and law from their respective perspectives in the new book Information and Law in Transition. New information and communication technologies have made it possible to create large registries and databases with the potential to lead to effective cross-border law enforcement, foster important new research as well as unwarranted mapping of individual persons' private life. At the same time, new needs of regulating privacy and Internet never cease to emerge. The process of negotiating a Data protection regulation in the European Union is one example illustrating this.

One theme of the book is entitled Welfare, health and research and includes three contributions from CRB researchers. Mats G. Hansson argues for new institutional structures in health care and medical research, aiming at a better balance between privacy and access to health data from registries. Privacy and health are considered important enough to be declared fundamental rights. The question Mats G. Hansson raises in the paper is how these rights and their underlying human interests should be balanced.

I discuss how to deal with biobank research from a legal point of view. The case of the Swedish LifeGene project illustrates the complexity and interconnectedness between national and European law in modern welfare state law today. The different legal systems need to be applied simultaneously, but they are not that easy to reconcile. Several interests have to be realized at the same time and and the national interest are not always easy to reconcile with individual fundamental rights or data protection.

Jane Reichel sets out to investigate the question how a transparent and efficient, but still secure, regulatory regime for access to human biological samples and health data could be created within the EU. The main obstacle seems to be the lack of competence within the EU to establish an administrative structure for the use of biological samples and supervision of research on health data. A comprehensive approach to the policy area is needed, where existing soft law tools fit together in a bigger picture and act as bridges between national jurisdictions.

Lind A-S, Reichel J, Österdahl I (Eds.), Information and Law in Transition - Freedom of Speech, the Internet, Privacy and Democracy in the 21st Century, Liber förlag

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