Principles and Practice in Biobank Governance by Mark Stranger Jane Kaye

Principles and Practice in Biobank Governance by Mark Stranger Jane Kaye

Author:Mark Stranger, Jane Kaye [Mark Stranger, Jane Kaye]
Language: eng
Format: epub
ISBN: 9781409492108
Barnesnoble:
Publisher: Ashgate Publishing Ltd
Published: 2012-12-28T00:00:00+00:00


The PRIVILEGED Project

PRIVILEGED is a three-year European Commission Framework Programme 6 Coordination Action project. A ‘Coordination Action’ is a funding vehicle to bring together individuals (perhaps across different disciplines) to discuss their existing work and conclusions about a particular area and, through that discussion and work, to develop and disseminate new and greater understandings and connections through the data. It is not primarily a funding vehicle for new research. PRIVILEGED, therefore, brings together academic lawyers, medical practitioners and researchers, ethicists and sociologists from all the Member States of the EU, Norway and Iceland (from the European Economic Area), and, by way of contrast with the European group, Israel, Japan and Taiwan. The project’s aim is to present to the Commission a series of regulatory choices concerning privacy protection (with particular consideration of data protection in such protection) in relation to processing of genetic information, particularly in research biobanking. In order to achieve this, the project has three phases. First, the members undertook a literature search of reports of surveys of citizens’ expressions about their interests in privacy,8 particularly in relation to their genetic information and biobanking. This was not new research, but a survey of the reported research of others in each of the states represented in PRIVILEGED. In the second stage of the work (the current stage at the time of writing this chapter), the existing regulatory frameworks at the European and national levels will be analysed, assessing the type of privacy interests that they seek to protect. The final part of the work builds on the findings and materials from the first two parts of the project in an exploration of how the citizens’ expressed interests can be better accommodated within the law relating to research using genetic information and biobanking. This will be done by presenting a range of regulatory possibilities that achieve different privacy landscapes, in particular examining how the data protection regime (especially the Directive 95/46/EC) can be arranged to optimize both research and privacy protection. Within this part of the project we will examine areas which present particular difficulties in the existing regulatory regimes (for example, the assumption that anonymization of data or informed consent necessarily offers optimum protection in this arena). One of the major themes in the research is the tension between the individual’s rights and the shared quality of genetic information (i.e. individuals share their genetic make-up with others – most significantly with family members, ethnic groups and those with the same or similar genetic disorders or conditions). A focus of the project is to find ways of accommodating these competing rights.



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