BBMRI-ERIC shall establish, operate and develop a pan-European distributed research infrastructure of biobanks and biomolecular resources in order to facilitate the access to resources as well as facilities and to support high quality biomolecular and medical research. BBMRI-ERIC operates on a non-economic basis.
The activities of BBMRI-ERIC shall be politically neutral and guided by the following values: pan-European in scope, combined with scientific excellence, transparency, openness, responsiveness, ethical awareness, legal compliance and human values.
BBMRI-ERIC is set up as a distributed research infrastructure in most, if not all European Member States. BBMRI-ERIC consists of 19 Member States and one International Organisation, making it one of the largest research infrastructures in Europe.
Members: Austria, Belgium, Czech Republic, Estonia, Finland, France, Germany, Greece, Italy, Latvia, Malta, the Netherlands, Norway, Poland, Sweden, and the United Kingdom.
Observer: Cyprus, Switzerland, Turkey, IARC/WHO
In 2008, BBMRI was one of the first projects entering the European Research Infrastructure Preparatory Phase of the ESFRI roadmap funded by the European Commission (GA 212111), lasting for 3 years until January 2011. At this time, BBMRI has grown into a 54-member consortium with more than 225 associated organisations (largely biobanks) from over 30 countries
This specific legal form is designed to facilitate the joint establishment and operation of research infrastructures of European interest and allows pulling together biobanks and biomolecular resources into a pan-European facility and providing access to collections of partner biobanks and biomolecular resources, their expertise and services on a non-economic basis.
The Assembly of Members shall be the body by which the Members take collective decisions on matters relating to BBMRI-ERIC. Those decisions shall then be implemented by the Director-General, together with the staff of the Central Executive Management Office and the Management Committee. (Statutes, Article 9.1)
The Assembly o Members shall be consituted through the first meeting of the Members after establishment of BBMRI as an ERIC. (Statutes, Article 9.2)
The Assembly of Members shall be composed of all Members of BBMRI-ERIC. Each Member shall be represented by up to two delegates officially appointed by the competent authority. They may be accompanied by a maximum of three advisors who may act as alternates to the delegates. Members shall state in the appointment letter the name of the delegate with voting rights and the order of representation. (Statutes, Article 9.3)
The responsibilities of the Assembly of Members are further specified in the Statutes, Article 9.6
According to the internal Rules of Procedure of the Finance Committee:
The Finance Committee shall be composed of one representative of each Member of BBMRI-ERIC who shall be officially appointed by the competent authority of each Member. Delegates may be accompanied by a maximum of two advisors who may act as proxies to the delegates. Members shall state in the appointment letter the name of the delegate.
A representative with official endorsement from each Observer may attend the meetings of the Finance Committee in an observing capacity.
With agreement of the Finance Committee the Chair may invite other experts to attend any of its sessions.
The Finance Committee shall be an advisory and preparatory committee of the Assembly of Members to:
(a) advise the Assembly of Members and the Director General on matters relating to the management and preparation of the budget of BBMRI-ERIC, its expenditure and accounts, and its future financial planning;
(b) provide the Assembly of Members and the Director General with advice on the financial implications of the other BBMRI-ERIC bodies’ recommendations;
(c) upon request, provide advice on other financial matters relating to the management and administration of BBMRI-ERIC;
(d) submit a proposal concerning the appointment of external auditors to the Assembly of Members.
(Statutes, Article 12.1)
According to the internal Rules of Procedures for the Steering Committee:
The Steering Committee shall be responsible for supporting and monitoring the performance of the Director General of BBMRI-ERIC between the sessions of the Assembly of Members in implementing the decisions of the Assembly of Members, including the Strategic Plan, the Work Programme and the budget and shall report thereof to the Assembly of Members.
Members of the Steering Committee do not represent a Member or any other organisation to which they belong; they are acting in the best interest of BBMRI-ERIC, within the powers mandated by and according to the decisions taken in the Assembly of Members.
(a) the Chair and Vice Chair of the Assembly of Members; and
(b) the Chair and Vice Chair of the Finance Committee.
The Management Committee (MC) consists of the National/Organisational Coordinator. Observer countries may be invited to participate. The MC is chaired by the Director General. It may elect a Vice Chair for the duration of one calendar year and may be re-elected on not more than two consecutive occasions.
The MC contributes to and supports the Director General in the developement of a draft annual Work Programme and a draft budget together with a preliminary draft Work Programme and a draft budget for the following two years. The MC also supports the Director General in the execution of the Work Programme and is responsible for enabling efficient interaction between BBMRI-ERIC and the Partner Biobanks of Members.
Left to right: Folkert Kemenade (NL deputy), Outi Törnwall (BBMRI-ERIC), Markus Pasterk (BBMRI-ERIC), Michael Hisbergues (FR), Mats Hansson (SE), Janis Klovins (LV), Marialuisa Lavitrano (IT), Andres Metspalu (EE), Jan-Eric Litton (BBMRI-ERIC), Kurt Zatloukal (AT), Anu Jalanko (FI), Annelies Debucquoy (BE), Nese Atabaey (TR), Kristian Hveem (NO), Gert-Jan van Ommen (NL), Andrea Wutte (BBMRI-ERIC), Michaela Mayrhofer (BBMRI-ERIC), Rudolf Nenutil (CZ deputy)
According to its Statutes (Article 3.1), BBMRI-ERIC shall establish, operate and develop a pan-European distributed research infrastructure of biobanks and biomolecular resources in order to facilitate the access to resources as well as facillities and support high quality biomolecular and medical research.
This goal can only be achieved with the inclusion of key stakeholders in a transparent manner through a context-dependent consultation and participatory engagement process. In a first step, BBMRI-ERIC and representatives of patient advocacy groups representing areas of expertise on genetics, rare diseases, chronic diseases, healthy ageing/prevention, degenerative diseases, cancer, obesity, and infectious diseases met to identify the key topics for the years to come and define the detailed parameters of how such a constructive dialogue can be put into place. In a next step, the Stakeholder Forum will be enlarged by chapters on industry representatives and other organisations and learned societies. The overall aim is to address key issues for a continuous constructive dialogue to ensure stakeholders’ needs are well taken into account while forming the policies, processes and tools that are the services of BBMRI-ERIC.
Its activities build on the achievements of the Stakeholder’s Forum of the BBMRI Preparatory Phase (2008-2011).
The Stakeholder Forum in a Nutshell
In the video below, Michaela Th. Mayrhofer, Chief Policy Officer of the Common Service ELSI, explains why the Stakeholder Forum was created and how it helps to protect the interests of patients, research participants, and citizens while enabling high-quality research.
The SEAB shall be composed of distinguished scientists or experts appointed in their own right, not as representatives of their respective background organisations or of Members. (Statutes, Article 16.2)
The Assembly of Members shall appoint the SEAB members and decide on their rotation and on the terms of reference of SEAB. (Statutes, Article 16.3)
The activities of BBMRI-ERIC shall be periodically evaluated by an independent Scientific and Ethical Advisory Board (SEAB). The SEAB shall also advise the Assembly of Members with regard to proposals of the Director-General on the implementation of the Work Programme. (Statutes, Article 16.1)
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