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Biobank Community

The Biobank Community aims to optimally utilize human biomaterials and the associated data to facilitate personalized medicine and health research.

The community is committed to further develop the national biobanking infrastructure by mapping and linking Dutch biobanks, and by standardizing and harmonizing biomaterials and the associated data at a national and international level. The community will work in close collaboration with individual biobanks, researchers, national and international policymakers and funders, patients, and other stakeholders.

Get involved

Please contact Peggy Manders if you want to know more about this community and/or if you want to contribute.

The Biobank Community is a collaborative platform where all stakeholders work and take steps together, if necessary in close collaboration with other communities.

Peggy Manders

Relevance

High quality and secure storage and sharing of human biomaterials and the associated data in a national biobanking infrastructure will greatly facilitate personalized medicine and health research. This calls for a network of professionals from various disciplines that exchange expertise and learn from each other.

Topics that the community works on

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    Incentives for reuse

    The current scientific system contributes to a feeling of entitlement of collections (“my samples and data”) and a practice of shielding. However, broad accessibility aimed at maximum impact should be the norm because collections are built with public money and voluntary donations. The Biobank Community needs to develop a “collective voice” to jointly communicate this message.

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    Application, review and issue procedures

    Current procedures for requesting, reviewing and issuing samples and data are often complex and not transparent, resulting in confusion, frustration and delayed projects. This is partly due to the current regulations (including non-WMO, privacy, international data sharing) and the policy differences between institutions (including informed consent procedure, medical-ethical assessment, unsolicited findings). Steps at an overarching level are needed to enable biobanks and collections, as responsible parties, to simplify their procedures. The Biobank Community needs to invest in harmonization of the processes by, among other things, striving for closer cooperation between the central biobanks.

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    Sample and data quality and reproducibility

    The results and reproducibility of scientific research are based on the quality of the underlying samples and data. Variations within and between collections arise due to differences in collecting, processing and storing samples and differences in the treatment and condition of donors. Such variations have an impact on the final results. Comparable quality of samples and data, and correct (pre-)analytical metadata is important to compare existing collections and to test findings. The Biobank Community needs to develop evidence-based protocols and implement these in the Netherlands.

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    Links

    Linking different data sources and/or IT systems increases the value of collected samples and data and makes it possible to answer new scientific questions. Currently, establishing links is an intensive and lengthy process, in which the non-technical issues represent the greatest obstacles (e.g., legal, agreements, standards). The Biobank Community needs to join existing initiatives such as Biolink NL, and share knowledge and expertise.

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    Findability of samples and data

    Available samples and data must be findable to promote use and prevent (international) duplication. The responsibility for this lies with biobanks/collections. Findability is supported by catalogues; the completeness, usability and awareness of catalogues can be further improved inside and outside the field. Communication about the available catalogues and their broader importance to biobanks, users and other stakeholders must be improved. The local biobank infrastructures must be involved as a linking pin towards the local community. Every research institute should have a local catalogue that is linked to the national catalogue of BBMRI-NL. Cooperation within Health-RI can help to develop this further.

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    Image and reputation

    Biobanks depend on the support and trust of many different stakeholders for their survival. Improving awareness among the general public and image among financiers, policymakers and institutes contributes to a sustainable biobank field and influences the other relevant topics of the Biobank Community. The biobank community needs to develop a joint communication strategy, that includes:

    • increasing awareness of biobanks and transparency towards the general public in order to promote trust and support,
    • emphasizing the scientific and social value of biobanks,
    • training current and next generation users to pay attention to research infrastructures, ELSI, (re) use, FAIR and Open Science within relevant biomedical curricula.
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    Public-private cooperation

    The potential of public-private partnerships in the field of biobanks and related research is currently underused, while there is a demand from companies for samples, data and ideas. In addition, the private sector is a potential source of income and knowledge for biobanks. The lack of cooperation is also undesirable from a social point of view, as the private sector is often needed to bring new innovations to the market and to create impact for patients. The Biobank Community needs to share experiences and expertise with each other.

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    Financing collections, biobanks and (re)use

    The long-term financing of individual collections, biobanks, and similar infrastructures represents a challenge, partly because the current funding landscape is not geared towards financing research infrastructure. Awareness must be created that biobanks are not self-supporting (self-sustaining). External funding sources are always needed. The Biobank Community needs to explore the (inter)national options for funding and develop a joint strategy for this.

Participants

This community brings together all local communities involved in biobanking, gathering all biobanking infrastructure activities under one umbrella. Most of the local communities are already involved in BBMRI-NL or Parelsnoer. The Biobank community will reach out to other Health-RI communities such as the ELSI community to exchange knowledge and expertise.

Mode of operation & governance structure

The community forms a national platform that facilitates collaboration and synergy at a strategic and operational level. In addition, they will advance certain themes in collaboration with other communities. The governance structure has not yet been worked out.

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