BBMRI-ERIC report highlights the need for biobanks to engage with the public

The report “Biobanks and the Public: Governing Biomedical Research Resources in Europe” provides a summary of research undertaken by the Working Group on Ethical, Legal, and Social Issues (ELSI) of the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) project, a major effort funded by the European Commission and aimed at coordinating biomedical resource collections in Europe.

Biobanks, interlinked collections of biological, medical, and lifestyle data, are important resources for biomedical research in the 21st century. But to be successful as emerging research infrastructures, biobanks need to engage with the public.

This is the conclusion of an extensive study, which examined the opinions of stakeholders, participants, and members of the concerned public regarding biobanks in Europe.

BBMRI was one of the first projects entering the European Research Infrastructure preparatory phase of the ESFRI roadmap funded by the European Commission.

On December 3rd, 2013, BBMRI was officially awarded the Community legal framework for a European Research Infrastructure Consortium (ERIC). 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.

The explicit goal of the ELSI sub-project was to provide guidance and advice on the governance of biobanks and biomolecular resource collections.

The material presented in the booklet is based on empirical research – in the form of numerous “focus group” interviews – as well as a series of meetings and discussions of the experts participating in the BBMRI/ELSI effort.

As such, the report represents perhaps the most comprehensive collection of materials related to the political and social governance of biobanks and biomolecular resource collections in Europe today.

The summary guide was written for a very broad audience, including government officials, medical researchers or biobanks practitioners, corporate managers, journalists, representatives of NGOs, and members of the informed public. In itself, the report reflects the main conclusion of their research: In order to be successful in the long term, biobanks must engage with the public.

For further information on the booklet: www.bbmri-eric.eu


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Editor’s Note

BBMRI-ERIC

Biological resources, such as cells, tissues or biomolecules are considered as the essential raw material for the advancement of biotechnology, human health, and for research and development in life sciences. The pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) improves the accessibility and interoperability of the existing comprehensive collections, either population-based or clinical-oriented, of biological samples from different (sub) populations of Europe.

These collections include the attached data on factors such as health status, nutrition, lifestyle, and environmental exposure of the study subjects. Combined with the expertise of the clinicians, pathologists, bio-informaticians, and molecular biologists involved, a globally unmatched, Europe-wide platform for translational medical research is envisaged with the aim to develop personalised medicine and disease prevention for the benefit of European citizens. In particular, BBMRI will ensure sustainable access to key resources required for science-based responses to several of the health-related grand challenges, such as sustainable health care for ageing population, new pandemics, and security threats.

To reach this goal, also biotech and pharmaceutical industry must have a possibility to collaborate with academic researchers in order to fully realise the enormous potential of European biobanking. In addition to clinical, ethical and legal experts, patient communities are involved to achieve standards and guidelines that properly balance individual values, such as protection of privacy and informed consent, with shared values of facilitated access to progress in health care and disease prevention.

This can only be achieved by a distributed research infrastructure with operational units in most, if not all, European Member States. BBMRI is implemented under the ERIC (European Research Infrastructure Consortium) legal entity. BBMRI-ERIC’s Central Executive Management Office ("Headquarter") is located in Graz, Austria that coordinates the interaction of National Nodes established in several Member States.

For further information: http://bbmri-eric.eu/

Countries

Austria, Belgium, Bulgaria, Cyprus, Czechia, Germany, Denmark, Estonia, Greece, Spain, Finland, France, Hungary, Ireland, Italy, Lithuania, Luxembourg, Latvia, Malta, Netherlands, Poland, Portugal, Romania, Sweden, United Kingdom