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Ethical, legal, and social implications in research biobanking: A checklist for navigating complexity
Biobanking & BioMol Resources Res Infrastruct Euro, ELSI Serv & Res, Graz, Austria.;Supreme Court Athens, Athina, Greece.;Acad Athens, Technol Transfer Off, Biomed Res Fdn, Athens, Greece.;Biomed Res Fdn Acad Athens, Athens, Greece..
Univ Vienna, Dept Sci & Technol Studies, Vienna, Austria.;BBMRI ERIC, Graz, Austria..
European Res infrastruct BBMRI ERIC, Graz, Austria..ORCID iD: 0000-0002-3909-8071
BBMRI ERIC, Graz, Austria..
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2024 (English)In: Developing World Bioethics, ISSN 1471-8731, E-ISSN 1471-8847, Vol. 24, no 3, p. 139-150Article in journal (Refereed) Published
Abstract [en]

Biobanks' activity is based not only on securing the technology of collecting and storing human biospecimen, but also on preparing formal documentation that will enable its safe use for scientific research. In that context, the issue of informed consent, the reporting of incidental findings and the use of Transfer Agreements remain a vast challenge. This paper aims to offer first-hand tangible solutions on those issues in the context of collaborative and transnational biobanking research. It presents a four-step checklist aiming to facilitate researchers on their compliance with applicable legal and ethical guidelines, when designing their studies, when recruiting participants, when handling samples and data, and when communicating research results and incidental findings. Although the paper reflects the outcomes of the H2020 B3Africa project and examines the transfers from and to the EU as a case study, it presents a global checklist that can be used beyond the EU.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024. Vol. 24, no 3, p. 139-150
Keywords [en]
biobanking, biomedical research, ELSI, informed consent, personal data, research ethics committees
National Category
Medical Ethics
Identifiers
URN: urn:nbn:se:uu:diva-540907DOI: 10.1111/dewb.12411ISI: 001022573400001PubMedID: 37428947OAI: oai:DiVA.org:uu-540907DiVA, id: diva2:1907472
Available from: 2024-10-22 Created: 2024-10-22 Last updated: 2024-10-22Bibliographically approved

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Slokenberga, Santa

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