1. Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
- Author
-
Melanie Goisauf, Isabelle Budin-Ljøsne, Deborah Mascalzoni, Lars Øystein Ursin, Sara Casati, Michaela Th. Mayrhofer, Heidi Beate Bentzen, Martin Boeckhout, Gillian M. Martin, Anna Durnová, Marialuisa Lavitrano, Liis Leitsalu, Katharine Smith, Goisauf, M, Martin, G, Bentzen, H, Budin-Ljosne, I, Ursin, L, Durnova, A, Leitsalu, L, Smith, K, Casati, S, Lavitrano, M, Mascalzoni, D, Boeckhout, M, and Mayrhofer, M
- Subjects
Biomedical Research ,Research Facilities ,Economics ,Social Sciences ,Surveys ,Medicinsk etik ,biobanking ,Informed consent ,Surveys and Questionnaires ,Medicine and Health Sciences ,Data Protection Act 1998 ,Computer Networks ,Biobanks -- Law and legislation ,Biological Specimen Banks ,Data protection ,media_common ,0303 health sciences ,Informed Consent ,Multidisciplinary ,Data Processing ,Human rights ,Corporate governance ,030305 genetics & heredity ,Biobank ,Europe ,ELSI ,Research Design ,Medicine ,Engineering ethics ,The Internet ,Information Technology ,Research Article ,Medical Ethics ,Computer and Information Sciences ,Science ,media_common.quotation_subject ,Biological Data Management ,Research and Analysis Methods ,03 medical and health sciences ,Political science ,Humans ,media_common.cataloged_instance ,VDP::Medisinske Fag: 700 ,European union ,Biobanks -- Management -- Government policy -- European Union countries ,030304 developmental biology ,Internet ,Survey Research ,business.industry ,Biology and Life Sciences ,Computational Biology ,VDP::Medical disciplines: 700 ,business ,Medical ethics ,Finance - Abstract
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., peer-reviewed
- Published
- 2019