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dc.contributor.authorGoisauf, Melanie
dc.contributor.authorMartin, Gillian
dc.contributor.authorBentzen, Heidi Beate
dc.contributor.authorLjøsne, Isabelle Sylvie Budin
dc.contributor.authorUrsin, Lars Øystein
dc.contributor.authorDurnová, Anna
dc.contributor.authorLeitsalu, Liis
dc.contributor.authorSmith, Katharine
dc.contributor.authorCasati, Sara
dc.contributor.authorLavitrano, Marialuisa
dc.contributor.authorMascalzoni, Deborah
dc.contributor.authorBoeckhout, Martin
dc.contributor.authorMayrhofer, Michaela Th.
dc.date.accessioned2020-02-11T11:20:22Z
dc.date.available2020-02-11T11:20:22Z
dc.date.created2019-09-19T15:37:30Z
dc.date.issued2019
dc.identifier.issn1932-6203
dc.identifier.urihttp://hdl.handle.net/11250/2641001
dc.description.abstractBiobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.nb_NO
dc.language.isoengnb_NO
dc.publisherPublic Library of Sciencenb_NO
dc.relation.urihttps://hdl.handle.net/10037/16700
dc.rightsNavngivelse 4.0 Internasjonal*
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/deed.no*
dc.titleData in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank researchnb_NO
dc.typeJournal articlenb_NO
dc.typePeer reviewednb_NO
dc.description.versionpublishedVersionnb_NO
dc.source.volume14nb_NO
dc.source.journalPLOS ONEnb_NO
dc.source.issue9nb_NO
dc.identifier.doi10.1371/journal.pone.0221496
dc.identifier.cristin1726866
dc.relation.projectNorges forskningsråd: 238999nb_NO
dc.relation.projectNordforsk: 81105nb_NO
dc.description.localcode© 2019 Goisauf et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.nb_NO
cristin.unitcode194,65,20,0
cristin.unitnameInstitutt for samfunnsmedisin og sykepleie
cristin.ispublishedtrue
cristin.fulltextoriginal
cristin.qualitycode1


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