On samples, data, and their mobility in biobanking: How imagined travels help to relate samples and data

Abstract

Biobanking involves the assembling, curating, and distributing of samples and data. While relations between samples and data are often taken as defining properties of biobanking, several studies have pointed to the challenges in relating them in practice. This article investigates how samples and data are curated, connected, and made mobile in practice. Building on an analysis of data collected at five hospital-based biobanks in Austria, the article describes and compares biobanking in three types of biobank collections: ‘departmental collections’, ‘project-specific collections’ and ‘hospital-wide collections’. It draws attention to the invisible work going into this infrastructure and highlights the central role of visions to make samples and data travel to a different location and thus support biomedical research. It shows that while visions of future travels are often epistemologically uncertain, they are informed by social ties and relationships between the collectives involved in the curation of samples and data on the one hand and the imagined users on the other. Finally, we point to the importance that policy actors in this domain consider the aspects we identified—and, in particular, reflect the temporalities inherent in such a research infrastructure.

Legal aspects of privacy-enhancing technologies in genome-wide association studies and their impact on performance and feasibility

“…This becomes especially apparent in studies obtaining their data from biobanks. These may rely on very broadly worded consent forms to be effective and competitive, depending on the specific biobank collection—departmental collections, project-specific collections or hospital-wide collection [ 65 , 66 ]. However, for compliance, consent must be very concrete and precise, explicitly permitting the use of genetic data and outlining the circumstances and possible future processing changes (as far as foreseeable in scientific terms).…”

Specifics of creating clinical abstract of biospecimens

“…Отдельной задачей является объединение усилий различных биобанков при проведении крупномасштабных исследований по различным направлениям. Фактически многие биобанки обладают огромным количеством образцов, которые используются недостаточно, но потенциально представляют собой "золотую жилу" для самых разнообразных научных проектов и коллабораций, при условии, что информация об их наличии станет доступной и видимой для различных исследовательских групп [32,33]. Предпосылкой для сотрудничества является возможность комплексного поиска и доступа к фенотипической, клинической и другой информации об образцах, которые в настоящее время хранятся в биобанках.…”