Biobanks are collections of samples from human origin, such as tissue or blood samples. The samples are connected with relevant data, e.g. sociodemographic or clinical data, and can be used for various research purposes. However, availability of samples is limited. Unlike data, samples can be fully consumed in the course of research projects. A sample donation is always voluntary and recruitment of volunteers can be challenging. To this adds that sample donation often comes along with (minimal) risks and uncertainties.
Thus, from an ethical perspective, it is relevant how access to samples is governed. Against the background of scarcity, one critical component of governance is prioritization. In order to enable the development of practice-oriented governance frameworks, the perspective of all relevant stakeholders needs to be taken into account.
The objective of FairBBank was to systematically assess current challenges and opportunities with regards to sample access in biobank research. By means of conceptual and empirical research studies, approaches for a fair allocation of samples should be developed. The project was funded by the BMBF.
The results have been published as follows:
- Langhof, Holger; Kahrass, Hannes; Sievers, Sören; Strech, Daniel (2017): Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study. Eur J Hum Genet. 2017 Feb;25(3):293-300. doi: 10.1038/ejhg.2016.172. (open access)
- Langhof, Holger; Kahrass, Hannes; Sievers, Sören; Strech, Daniel (2016): Internationaler status quo von Access Policies: Ergebnisse einer Querschnittserhebung. In: Illig T, Hummel M, Jahns R, Kiehntopf M, Lieb W, Nauck M, Nußbeck S, Prokosch HU, Schirmacher P, Semler SC, Siddiqui A (Hrsg.): Biobanken als Bindeglied zwischen Versorgung und Forschung. TMF, Berlin, 179-188
- Langhof, Holger; Kahrass, Hannes; Illig, Thomas; Jahns, Roland; Strech, Daniel (2018): Current practices for access, compensation, and prioritization in biobanks. Results from an interview study. Eur J Hum Genet. 2018 Nov;26(11):1572-1581. doi: 10.1038/s41431-018-0228-x.
At the end of the three-years project period, a workshop was held, bringing together experts from biobanks as well as representatives from other Big Data-research related areas. During the workshop, the FairBBank results have been presented and needs and perspectives for future research and governance questions were discussed intensively. A workshop report is available here (in German).