In the past decade, public funding programmes – in particular those of the Federal Ministry of Education and Research (BMBF) – have enabled the biobanks at German universities to make significant advances. They have introduced standards for quality management and data exchange, and paved the way for digitalisation. The aim is now to ensure that millions of available biosamples and the associated data are used sustainably for medical research. On 4–5 December 2019, 250 experts discussed just this at the 8th National Biobank Symposium held in Berlin. The motto of the symposium co-hosted by the German Biobank Node (GBN) and the Technology and Methods Platform for Networked Medical Research (TMF e.V.) was “Biobanks – pioneers for the FAIR sharing of data and samples in medical research”.
The leitmotif of this year’s symposium is “FAIR”, which stands for findable, accessible, interoperable, reusable. The FAIR principles were drawn up by representatives from science, industry, funding organisations and scientific publishers and published in 2016. They have stood for a new mentality to sharing in science ever since. Biobanks have thus evolved from local institutions to digitally networked data infrastructures that can be accessed all across Europe. “Implementation of the FAIR principles is not only a question of scientific culture, however, but also of social acceptance for the sharing of data. Science must proactively communicate with the public and involve them more,” emphasises TMF’s Managing Director Sebastian Claudius Semler.
Findable and accessible: facilitating access to samples and data
One fundamental requirement is patients’ consent to the use of their samples and data for medical research. “It is fair to let donors decide for themselves how extensively they wish to allow their samples and data to be used for scientific purposes,” comments medical law expert Prof. Dr. Jochen Taupitz, who works at the universities in Heidelberg and Mannheim. The willingness among the German population to support medical research with health data is generally very high. A survey conducted in August 2019 by FORSA on TMF’s behalf confirms this.
The usage of samples and data has been simplified by the “Sample Locator” (samplelocator.bbmri.com) – an online search tool available since autumn 2019. It facilitates feasibility queries and access to the samples of multiple German biobanks. The Sample Locator was developed by the German Biobank Node (GBN) in cooperation with the German Cancer Research Center (DKFZ) in Heidelberg and is currently available in a developer version.
Interoperable and reusable: common standards and usage in multiple research projects
Samples can be used comprehensively if they are linked to as much research and clinical data as possible. In light of the digitalisation of the health care system, biobanks must better position themselves strategically and cooperate closely with major infrastructure such as the Medical Informatics Initiative (MII) and the German National Research Data Infrastructure (NFDI). Within this, it is essential that common standards are agreed for data exchanges with regard to interoperability. This will allow scientists to use research data even more efficiently in the future. GBN Coordinator Prof. Dr. Michael Hummel explains: “Making samples, clinical data and pure research data available for multiple projects would mean a quantum leap in medical research.”