Biobanks and biobank networks are important for high-quality biomedical research, and provide a unique opportunity for the discovery of novel genes for diagnosis and treatment. Despite their importance, biobanks face numerous challenges in terms of quality and comparability of samples. The establishment of common standards, not only for storage and processing of biospecimens but also for discovery and validation, as well as harmonized data from those samples has become one of the major challenges that biobankers face and are working on. In this chapter, we argue that biobanks and biobank networks play a pivotal role in biomedical research. Biobanks are central to the enactment and implementation of collection practices in which good-quality samples and related information are collected from the population. This activity is central to the production of good research whose results are both replicable and valid.
Eva Ortega-Paíno and Aaro Tupasela
Klaus Hoeyer, Aaro Tupasela and Malene Bøgehus Rasmussen
In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policymaking, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines of scientific work. This chapter takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query: What makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgement in policies promoting international data sharing. The quest for Big Data is dependent on adequate maneuvering in local contexts and grand solutions of harmonization of ethics rules cannot replace the detailed ethics work aimed at acknowledging local concerns.