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Publication . Report . 2014

Supporting researchers using sensitive data - BioMedBridges knowledge exchange workshop

Sariyar, Murat; Schluender, Irene; Hancocks, Tom; Suhr, Stephanie;
Open Access
Published: 13 Oct 2014
Publisher: Zenodo
Abstract
Organised by TMF and the BioMedBridges training team, technical staff, legal and ethics experts met on 30 June 2014 in Berlin for a knowledge exchange workshop to discuss how best to support life science researchers who need to use sensitive data and/or biosamples. Presentations outlined current and proposed EU data regulations, and synergies between existing resources that aid researchers in navigating various local, national, European and international legislation were explored. The discussions reflected the complexity of the issue and highlighted (1) that the different approaches assume different user needs and prior knowledge of the subject, affecting how a service is designed and the usefulness of it is assessed, (2) that there is much potential for collaborations, and (3) that enriched annotations of services (e.g. update status, completeness of information, disclaimers etc.) would increase their value and facilitate their quick assessment by (potential) users. Overall, it became obvious that there is still work to do with respect to providing researchers using sensitive data or samples with truly ‘useful’ tools that do not require pre-existing, in-depth knowledge of Ethical, Legal and Social Implications (ELSI) or plenty of time to delve into the details. Ultimately, separate resources, maintained by experts familiar with the respective fields of research, may be needed while - in the longer-term - harmonization and ease of use for the researcher are very desirable.
Subjects

ethics, legal, ELSI, sensitive data, data protection

Funded by
EC| BIOMEDBRIDGES
Project
BIOMEDBRIDGES
Building data bridges between biological and medical infrastructures in Europe
  • Funder: European Commission (EC)
  • Project Code: 284209
  • Funding stream: FP7 | SP4 | INFRA
Related to Research communities
EGI Federation
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