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European Legal Perspectives on Health-Related Direct-to-Consumer Genetic Testing
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
2016 (English)Doctoral thesis, monograph (Other academic)
Abstract [en]

This doctoral thesis examines how the coexistence of the Council of Europe and the EU

influences rules on direct-to-consumer genetic testing, as well as how these influences

reflect on individual states that are simultaneously bound to both of the legal orders of


Through the lens of legal pluralism and state sovereignty this research examines the

competence and authority of the Council of Europe and the EU to handle the market aspects

(technical performance and utility) as well as privacy (consent to a medical service

and data protection requirements), and examines the obligations these two legal orders

place on the Member States of the EU. This research traces the avenues for coexistence

between the legal orders in relation to direct-to-consumer genetic testing, and examines

how the coexistence of the Council of Europe and the EU is reflected in the legal framework

that is relevant to the regulation of direct-to-consumer genetic testing.

It can be observed that the EU is soaking in the Council of Europe norms in some areas,

as with valid consent to a medical intervention, but also exporting its own norms to

the Council of Europe in other areas, as with the area of data protection. Consequently,

one can question whether it is increasingly becoming more difficult to draw clear limits

between the ‘Council of Europe law’ and the ‘EU law’ in these areas. The Council of Europe

by aligning its laws with the EU creates far-reaching implications to the states that

are members of the Council of Europe but are not the Member States of the EU.

This thesis claims that the resulting fragmented regulatory space and the interaction

between the Council of Europe and the EU make the legal sources challenging to interpret

and foresee as a result the principle of legal certainty could be undermined. In the

absence of formalized interaction between the two legal orders, interpretation difficulties

could create further challenges.

Place, publisher, year, edition, pages
Stockholm: Jure, 2016. , 374 p.
Keyword [en]
direct-to-consumer genetic testing, legal pluralism, state sovereignty, coexistence, privacy, consent, technical performance, utility
National Category
Social Sciences Law
Research subject
Medical Law
URN: urn:nbn:se:uu:diva-305371ISBN: 978–91–7223–657-8OAI: oai:DiVA.org:uu-305371DiVA: diva2:1037518
Public defence
2016-11-09, Gustavianum, Akademigatan 3, Uppsala, 10:15 (English)
Ragnar Söderbergs stiftelse, R52/10Torsten Söderbergs stiftelse, R52/10
Available from: 2016-10-17 Created: 2016-10-16 Last updated: 2016-10-24

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