1. Data Hugging in European Biobank Networks
- Author
-
Aaro Tupasela, Research Units of the Faculty of Social Sciences, and Department of Social Research (2010-2017)
- Subjects
Cultural Studies ,Health (social science) ,Sociology and Political Science ,Relation (database) ,COLLECTIONS ,data sharing ,Big data ,Control (management) ,INFRASTRUCTURE ,Biomedical Engineering ,Distribution (economics) ,050905 science studies ,RESEARCH IMPACT FACTOR ,03 medical and health sciences ,Politics ,History and Philosophy of Science ,big data ,0502 economics and business ,Circulation (currency) ,050207 economics ,Custodians ,0303 health sciences ,318 Medical biotechnology ,050208 finance ,business.industry ,030305 genetics & heredity ,05 social sciences ,Public relations ,data hugging ,Data science ,Biobank ,Data sharing ,Biobanks ,Geography ,5141 Sociology ,HEALTH ,Business ,0509 other social sciences ,ACCESS ,GENOMICS ,Biotechnology - 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.
- Published
- 2020