Jasper Bovenberg
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The document discusses the ethical, legal and social issues (ELSI) surrounding biobanks and BBMRI, a European research infrastructure for biobanks and biomolecular resources. It notes that while the founding father of biobanking Antoni van Leeuwenhoek did not consider ELSI, they are important today given concerns about potential misuse of data and the need for public trust and support. The document outlines work being done in BBMRI to address ELSI, including analyzing focus group research on public attitudes, developing legal guidelines and templates through a wiki platform, and considering issues around consent, data sharing and privacy.
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Disease-related biobanks collect human biological samples and associated clinical data from patients to study the causes and outcomes of diseases. These biobanks vary in their sample sizes and types, levels of institutional support, and whether samples and data are collected and stored according to standard procedures. The document provides examples of disease-related biobanks in Europe and North America that have contributed samples to genome-wide association studies, with the total number of samples collected in Europe significantly higher than in North America. It notes that the BBMRI catalogue seeks to provide an overview of disease-related biobanks.
Neil Formstone
The Wales Cancer Bank aims to establish a collection of tissue and blood samples from cancer patients in Wales to help identify novel biomarkers for cancer prediction, prognosis, and personalized treatment. It has consented over 3,190 patients from 7 hospitals since 2005. Patients have been actively involved as advisors, donors, and advocates. They provide a unique perspective and want to help advance cancer research that could benefit future patients. The biobank must responsibly use samples for high-quality reproducible research to further knowledge and develop new treatments.
Eero Vuorio
The document summarizes the European Research Infrastructure for Biobanking and Biomolecular Resources (BBMRI) preparatory phase project. It discusses how biobanks across Europe have historically been small and fragmented. The BBMRI aims to integrate these resources to enable large-scale biomedical research. Over 50 institutions from 28 countries are involved in developing common standards, data sharing agreements, and a sustainable funding model to maximize the research potential of Europe's biological samples and data.
Fabrizia Bignami
The document discusses using a hub and spoke model to connect biobanks in Europe. Key points:
- A hub and spoke structure will be used with federated databases where hubs provide database services and routing of queries at central access points.
- Hubs can focus on different data types like genotypes, phenotypes, samples, or metadata.
- A common schema will allow different national hubs to connect.
- Work package 5 aims to develop standards for identifiers, communication between biobanks, and a shared lexicon/terminology.
- Challenges include changing data definitions, integration of different data types, and dealing with natural language differences between countries.
International Biobanking: Oportunities and Challenges for Private-Public Coll...
International Biobanking: Oportunities and Challenges for Private-Public Coll...BBMRI Stakeholder's Forum
David R. Cox M.D.,Ph.D.
Senior Vice President and Chief Scientific Officer
Biotherapeutics and Bioinnovation Center
Pfizer Inc Georges Dagher
The document summarizes the European Research Infrastructure for Biobanking and Biomolecular Resources (BBMRI) preparatory phase project. It discusses how biobanks across Europe have historically been small and heterogeneous, hindering modern genetic research. The BBMRI aims to integrate existing biobanks and resources to create a large pan-European infrastructure following common standards. The preparatory phase involved over 50 institutions from 28 countries to assess resources and technologies and develop plans for a sustainable infrastructure to support research.
Markus Perola
The document discusses the mission of Work Package 2 (WP2) of BBMRI, which is to provide a strategy to address the legal, governance, and financial challenges of utilizing large epidemiological sample collections and population cohorts. European investigators have collected population-based cohorts and health data over decades using public funds. BBMRI aims to harmonize data across biobanks to facilitate global comparisons. The document also reviews technical solutions and quality criteria for storage, retrieval, and transfer of DNA samples across five biobanks to demonstrate challenges in studying obesity as a model phenotype.
Julie Corfield
The document discusses collaboration in biobanking to support pharmaceutical R&D activities. It notes that R&D costs are high and innovation is needed. Biobanks can help by providing samples for research into diseases. The document describes AstraZeneca's global biobank network and examples of collaborations on disease-specific biobanks for conditions like rheumatoid arthritis and COPD. It argues that more collaboration is needed through standards, infrastructure, addressing ethical issues, and meeting customer needs to sustain R&D activities.
Jean Emmanuel Faure
The document discusses European Union actions to support research infrastructures like biobanks. It outlines the establishment of the European Strategy Forum on Research Infrastructures (ESFRI) to develop a long-term vision and policy for research infrastructures. ESFRI's roadmap identified 44 potential projects, including BBMRI, a pan-European biobank infrastructure. The EU provided funding to develop BBMRI and established a legal framework to facilitate multi-country research infrastructures. Future EU funding calls aim to support the construction and operation of infrastructures like BBMRI to enable collaborative research across Europe.
Biobanks: Patients’ Role and Expectations
Fabrizia BIGNAMI, PhD
Eurordis Therapeutic Development Director. EuroBioBank Administrative Coordinator. www.eurordis.org
www.eurobiobank.org
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