Ethics and dissemination

WP 5 – Ethics and dissemination deals with the challenge to navigate between research and patient interest and the large number of different national ethical regulations. However, the project aims to consent with all important national regulations and decisions by ethical review boards in order to promote patient and public trust in the project. To ensure a critical review of the issue, an independent Ethics Board has been founded. The members of the board are:

Prof. Dr. Marian Verkerk (Prof. for Ethics of Care, Faculty of Medical Sciences, University of Groningen, The Netherlands) 

Prof. Manuel M. Morente MD, PhD (CNIO, Spanish National Cancer Research Center, Head of the CNIO Tumour Bank Core Unit, Spain) 

Lars Øystein Ursin, PhD (Department of public health and general practice, Norwegian University of Technology and Science, Norway)

The main tasks of this project are to assess international guidelines for e.g. governing patient and animal model data and for creating a structured inventory/meta-database of e.g. existing clinical RA cohorts, as well as to foster patient participation by early inclusion of patients in research planning (see also WP2).

Intellectual Property Rights and confidentiality issues between academic and industrial partners will be address by an IP Committee, as well as The Technology Transfer Offices (TTO) of the participating research institutes will assist the partners from their institutions in identifying patentable research results.

Academic WP-leader: Steffen Gay, Mats G. Hansson
EFPIA WP-leader: Alix Berton