Ethical, legal and societal issues
Developing an infrastructure "properly embedded into European ethical, legal and societal frameworks" requires specific preparation on ELSI issues, both on operational questions that deal with the immediate feasibility of the endeavour and on more fundamental questions. This will help in understanding how these issues may impact on the organization of BBMRI, and the public(s) perception of BBMRI and the public(s) engagement. Both aspects have to be addressed in the preparatory phase, by means of coordination activities, and WP6 will work in these two directions: 1) rapid operationality based on existing frameworks which will result in practical tools and 2) preparatory steps for long-term solid BBMRI foundation in ethical, legal and social aspects, which will result in background paper, proposals and some level of piloting of approaches and methodologies.
Contacts
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Anne CAMBON-THOMSEN
INSERM
E-mail: cambon(o)cict.fr
Cc: rialseb(o)cict.fr
T: +33 5 61 14 59 59
F: - |
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- http://www.legalpathways.eu/
BBMRI is dedicated to be properly embedded in the European legal framework. To that end, it pioneers an interactive approach to address the complex legal issues associated with pan European biobanking: the WIKI Legal Platform. The WIKI is to provide a dynamic, online, grass roots platform for sharing, discussing, validating and issuing authoritative and reliable legal forms and standards. These forms and templates aim to navigate the BBMRI community the legal pathways that govern its pan European, cross border, multi-jurisdictional infrastructure and operations. The platform is to unearth any existing knowledge, expertise and templates currently in use by (prospective) BBMRI Members and Partners. If you want to use the platform or make a contribution, please go to http://www.legalpathways.eu/, make an account and join the WIKI-community
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