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Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research


Autoři: Melanie Goisauf aff001;  Gillian Martin aff001;  Heidi Beate Bentzen aff003;  Isabelle Budin-Ljøsne aff005;  Lars Ursin aff006;  Anna Durnová aff001;  Liis Leitsalu aff001;  Katharine Smith aff009;  Sara Casati aff010;  Marialuisa Lavitrano aff010;  Deborah Mascalzoni aff011;  Martin Boeckhout aff013;  Michaela Th. Mayrhofer aff001
Působiště autorů: BBMRI-ERIC, Graz, Austria aff001;  Department of Sociology, University of Malta, Msida, Malta aff002;  Norwegian Research Center for Computers and Law, Faculty of Law, University of Oslo, Oslo, Norway aff003;  Centre for Medical Ethics, Faculty of Medicine, University of Oslo, Oslo, Norway aff004;  Norwegian Institute of Public Health, Oslo, Norway aff005;  Department of Public Health and Nursing, Norwegian University of Science and Technology, Trondheim, Norway aff006;  Institute for Advanced Studies, Vienna, Austria aff007;  Institute of Genomics, Estonian Genome Center, University of Tartu, Tartu, Estonia aff008;  Centre for Health Policy, Institute of Global Health Innovation, Imperial College London, London, England, United Kingdom aff009;  Department of Medicine and Surgery, University Milano—Bicocca, Milan, Italy aff010;  Department of Public Health, Center for Research Ethics and Bioethics, University of Uppsala CRB, Uppsala, Sweden aff011;  EURAC Research, Institute of Biomedicine, Bolzano, Italy aff012;  Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands aff013
Vyšlo v časopise: PLoS ONE 14(9)
Kategorie: Research Article
doi: https://doi.org/10.1371/journal.pone.0221496

Souhrn

Biobanks 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.

Klíčová slova:

Research and analysis methods – Research design – Survey research – Surveys – Research facilities – Computer and information sciences – Information technology – Data processing – Computer networks – Internet – Social sciences – Economics – Finance – Medicine and health sciences – Biology and life sciences – Computational biology – Biological data management


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