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dc.date.accessioned2020-05-26T19:30:21Z
dc.date.available2020-05-26T19:30:21Z
dc.date.created2019-09-19T15:37:30Z
dc.date.issued2019
dc.identifier.citationGoisauf, Melanie Martin, Gillian Bentzen, Heidi Beate Ljøsne, Isabelle Sylvie Budin Ursin, Lars Øystein Durnová, Anna Leitsalu, Liis Smith, Katharine Casati, Sara Lavitrano, Marialuisa Mascalzoni, Deborah Boeckhout, Martin Mayrhofer, Michaela Th. . Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research. PLOS ONE. 2019, 14(9)
dc.identifier.urihttp://hdl.handle.net/10852/76307
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.
dc.languageEN
dc.publisherPLOS
dc.rightsAttribution 4.0 International
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.titleData in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
dc.typeJournal article
dc.creator.authorGoisauf, Melanie
dc.creator.authorMartin, Gillian
dc.creator.authorBentzen, Heidi Beate
dc.creator.authorLjøsne, Isabelle Sylvie Budin
dc.creator.authorUrsin, Lars Øystein
dc.creator.authorDurnová, Anna
dc.creator.authorLeitsalu, Liis
dc.creator.authorSmith, Katharine
dc.creator.authorCasati, Sara
dc.creator.authorLavitrano, Marialuisa
dc.creator.authorMascalzoni, Deborah
dc.creator.authorBoeckhout, Martin
dc.creator.authorMayrhofer, Michaela Th.
cristin.unitcode185,52,13,0
cristin.unitnameSenter for medisinsk etikk
cristin.ispublishedtrue
cristin.fulltextoriginal
cristin.fulltextoriginal
cristin.qualitycode1
dc.identifier.cristin1726866
dc.identifier.bibliographiccitationinfo:ofi/fmt:kev:mtx:ctx&ctx_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.jtitle=PLOS ONE&rft.volume=14&rft.spage=&rft.date=2019
dc.identifier.jtitlePLOS ONE
dc.identifier.volume14
dc.identifier.issue9
dc.identifier.doihttps://doi.org/10.1371/journal.pone.0221496
dc.identifier.urnURN:NBN:no-79387
dc.type.documentTidsskriftartikkel
dc.type.peerreviewedPeer reviewed
dc.source.issn1932-6203
dc.identifier.fulltextFulltext https://www.duo.uio.no/bitstream/handle/10852/76307/2/artikkel44211.pdf
dc.identifier.fulltextFulltext https://www.duo.uio.no/bitstream/handle/10852/76307/5/correction.pdf
dc.type.versionPublishedVersion
cristin.articleide0221496
dc.relation.projectNFR/238999
dc.relation.projectNORDFORSK/81105


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Attribution 4.0 International
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