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Data in question :
Data in question : A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
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- Goisauf, Melanie (author)
- ERIC, BBMRI, Graz, Austria
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- Martin, Gillian (author)
- ERIC, BBMRI, Graz, Austria;Univ Malta, Dept Sociol, Msida, Malta
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- Bentzen, Heidi Beate (author)
- Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway;Univ Oslo, Ctr Med Eth, Fac Med, Oslo, Norway
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- Budin-Ljösne, Isabelle (author)
- Norwegian Inst Publ Hlth, Oslo, Norway
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- Ursin, Lars (author)
- Norwegian Univ Sci & Technol, Dept Publ Hlth & Nursing, Trondheim, Norway
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- Durnova, Anna (author)
- ERIC, BBMRI, Graz, Austria;Inst Adv Studies, Vienna, Austria
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- Leitsalu, Liis (author)
- ERIC, BBMRI, Graz, Austria;Univ Tartu, Inst Genom, Estonian Genome Ctr, Tartu, Estonia
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- Smith, Katharine (author)
- Imperial Coll London, Inst Global Hlth Innovat, Ctr Hlth Policy, London, England
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- Casati, Sara (author)
- Univ Milano Bicocca, Dept Med & Surg, Milan, Italy
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- Lavitrano, Marialuisa (author)
- Univ Milano Bicocca, Dept Med & Surg, Milan, Italy
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- Mascalzoni, Deborah, 1973- (author)
- Uppsala universitet,Centrum för forsknings- och bioetik,EURAC Res, Inst Biomed, Bolzano, Italy
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- Boeckhout, Martin (author)
- Univ Med Ctr Utrecht, Dept Med Humanities, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands
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- Mayrhofer, Michaela Th. (author)
- ERIC, BBMRI, Graz, Austria
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(creator_code:org_t)
- 2019-09-18
- 2019
- English.
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In: PLOS ONE. - : PUBLIC LIBRARY SCIENCE. - 1932-6203. ; 14:9
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Abstract
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- 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.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Medicinsk etik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Medical Ethics (hsv//eng)
Publication and Content Type
- ref (subject category)
- art (subject category)
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PLOS ONE
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To the university's database
- By the author/editor
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Goisauf, Melanie
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Martin, Gillian
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Bentzen, Heidi B ...
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Budin-Ljösne, Is ...
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Ursin, Lars
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Durnova, Anna
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Leitsalu, Liis
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Smith, Katharine
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Casati, Sara
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Lavitrano, Maria ...
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Mascalzoni, Debo ...
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Boeckhout, Marti ...
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Mayrhofer, Micha ...
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- About the subject
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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and Medical Ethics
- Articles in the publication
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PLOS ONE
- By the university
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Uppsala University