Data Hugging in European Biobank Networks

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http://hdl.handle.net/10138/336579

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Tupasela , A 2021 , ' Data Hugging in European Biobank Networks ' , Science as Culture , vol. 30 , no. 4 , pp. 513-534 . https://doi.org/10.1080/09505431.2021.1949274

Title: Data Hugging in European Biobank Networks
Author: Tupasela, Aaro
Contributor: University of Helsinki, Research Units of the Faculty of Social Sciences
Date: 2021-10-02
Language: eng
Number of pages: 22
Belongs to series: Science as Culture
ISSN: 0950-5431
URI: http://hdl.handle.net/10138/336579
Abstract: The sharing, circulation, distribution, and use of human tissue samples and related data have become a major political and scientific pre-occupation during the past two decades. In the age of big data, the political, scientific, and economic momentum around the need to increasingly collect and collate massive amounts of data has intensified. At the same time, the control and sharing of samples and data have become increasingly strategic in positioning biobanks within the global biomedical research market. Numerous commentators have identified several reasons why and with whom biobanks choose to share. Despite intensified efforts to encourage sharing within networks, there are still actors who have not embraced the values of sharing. The term 'data hugging' is introduced as a form of data work through which value is generated but sharing as a practice is not exercised according to community expectations. Data hugging is a term used within the biobanking community to describe the practice of withholding samples or data from other network members. While some biobankers consider data hugging to be an impediment to efficient and responsible science, it can also be another way of generating value in an otherwise challenging value creation environment. European biobanking policies, as well as the biobanking community, need a better understanding of these value-generating practices in relation to the life cycle of the biobank.
Subject: ACCESS
Biobanks
COLLECTIONS
GENOMICS
HEALTH
INFRASTRUCTURE
RESEARCH IMPACT FACTOR
big data
data hugging
data sharing
5141 Sociology
318 Medical biotechnology
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