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Stakeholder Forum
The Stakeholder Forum is an important pillar in BBMRI-ERIC’s governance
What is the BBMRI-ERIC Stakeholder Forum?
The BBMRI-ERIC Stakeholder Forum is the main interface for European patients’ organisations, civil society, industry and academia to interact with the biobanking universe.
The role of stakeholders is enshrined in the BBMRI-ERIC statutes: as one of the advisory boards, the Stakeholder Forum contributes to the decision-making process of BBMRI-ERIC, together with the Scientific and Ethical Advisory Board (SEAB).
Through the Stakeholder Forum, we want to build a sustainable, egalitarian relationship between the biobank community and its stakeholders. The objective is to increase each other’s awareness on needs and expectations on key issues related to biobanking, such as data protection, informed consent in health research, health research priorities, and other ethical, legal and societal issues (ELSI).
How did the Stakeholder Forum evolve?
Stakeholders have been involved in BBMRI-ERIC since the very inception of BBMRI-ERIC back in 2009. Patients’ organisations/civil society groups already working on biobanking issues showed a sincere interest in BBMRI-ERIC and contributed to the development of the research infrastructure.
Stakeholder Forum Members
- Alastair Kent (individual member)
- ECPC – European Cancer Patient Coalition
- EIWH – European Institute for Women’s Health
- EPIONI – Greek Carers Network (EL)
- European Patients Forum (EU)
- National Cancer Research Institute Consumer Forum (UK)
- Primary Sclerosing Cholangitis Patients Europe
- UseMyData (UK)
Stakeholder Forum Secretariat
The Secretariat of the Stakeholder Forum supports and coordinates the work of the Forum, and connects it directly to the BBMRI-ERIC decision-making process.
Richard Stephens
Francesco Florindi
