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Data in Question. Survey on ELSI Challenges in Biobank-Based Research

Authors: Goisauf, Melanie; Martin, Gillian;

Data in Question. Survey on ELSI Challenges in Biobank-Based Research

Abstract

The European biobanking landscape continues to develop and has become a key resource for biomedical research and innovation. The increasing role of biobanks to improve health and fostering innovation is accompanied by questions about the ethical, legal, and societal impacts (ELSI) of these infrastructures. Researchers and stakeholders in the field of biobanking are facing different social, ethical and legal challenges related to handling and sharing biological samples and health related data. These practices are directly impacted by new technologies and upcoming changes in European law, such as the new EU General Data Protection Regulation (GDPR), which will enhance the rights for data subjects regarding the processing of their personalised data. Improving informed consent is one of the key challenges in this regard, as samples and data may be shared widely between researchers and projects, with new possibilities for data linkage, particularly in the context of growing public-private partnerships within the health industry. This raises questions as to whether, and to what extent participants should be involved in future uses of their biomaterial in an emerging research infrastructure, where the exact purposes of samples collected prospectively are unclear at the time of donation and consent. Hence, the increasing possibilities for research, especially with data, emphasises the need to improve practices of informing and re-contacting participants, and to establish new tools for participant engagement.

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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
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popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
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