In a groundbreaking initiative, the German Biobank Node (GBN) and patient organisations have published a joint position paper. Its aim is to strengthen the use of academic biobanks and to increase patient involvement in biomedical research. These measures are intended to increase the effectiveness and sustainability of research.
The donation of human biospecimens, such as blood or tissue, from sick and healthy people is an important contribution to both biomedical research and safe patient care. Academic biobanks, which process and store these samples and make them available for research projects, have become important infrastructures in Germany in recent years thanks to federal funding programmes. The GBN and the German Biobank Alliance (GBA), which GBN coordinates, are initiatives that have enabled the establishment and networking of centrally organised and quality-assured biobanks.
Background to the position paper
Despite this progress, existing biobanks are not yet widely used. They are, however, essential for achieving reliable research results and thus fulfilling the wish of sample donors to support medical research in a sustainable way. At the same time, patient involvement in biomedical research is often insufficient. Patients want to ensure that their samples are used responsibly and that their needs and interests are taken into account.
Concerns and solutions
Against this background, the GBN/GBA, the BRCA network e. V., the Federal Association for Children with Heart Disease e. V., the German Restless Legs Association (RLS e. V.) and the Association VHL (von Hippel-Lindau) affected families e. V. have developed joint recommendations in a position paper. "Centrally organised, quality-assured biobanks are indispensable for the future of biomedical research," says GBN Executive Board spokesperson PD Dr. Sara Nussbeck. "With this position paper, we are committed to optimising their use and strengthening patient participation."
The position paper emphasises the need to use academic biobanks more effectively. This includes the early consultation of researchers by biobanks for new research projects and the integration of existing sample collections. The paper recommends that the use of biobanks should be firmly anchored in the funding guidelines of the German Federal Ministry of Education and Research (BMBF) and other funding institutions. Prof. Dr. Roland Jahns, member of the editorial team and Director of the Interdisciplinary Biomaterial Bank and Database Würzburg (ibdw), says: "By consistently integrating centrally organised biobanks and promoting the exchange of samples and data, we can create a more sustainable research landscape from which we all benefit."
An important concern of the paper is the increased involvement of patients in biomedical research. Patients' representatives should participate in the planning and implementation of research projects. This includes the identification of research needs and the subsequent design of funding calls. Dr. Stefanie Houwaart of the BRCA network e. V. emphasises: "By involving patients, we want to bring our collective experience to bear on research. The valuable samples will be used to answer research questions that are highly relevant to patients and therefore of high medical benefit."
Funding and sustainability
The long-term funding of centrally organised biobanks is crucial. To ensure this, the Federal Laender (counties) and funding institutions should increase their core funding. In addition, incentives should be created for the sharing of samples and data in an academic context. "Sustainable funding and better use of central biobanks are an important basis for academic research – today and especially in the future," Prof. Dr. Matthias Frosch says, President of the Association of German Medical Faculties (MFT).
Broad support for the position paper
The MFT is an official supporter of the paper – together with nine other organisations and centres: the Alliance of Chronic Rare Diseases (ACHSE e. V.), the Association of Medical Ethics Committees in Germany (AKEK e. V. ), the Biobanking and Biomolecular Resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC), the Bavarian Center for Cancer Research (BZKF), the German Cancer Research Center (DKFZ), the German Consortium for Translational Cancer Research (DKTK), the German Rheumatism League, Long COVID Germany and PRO RETINA Germany e.V.
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