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Ethical, legal, and social implications in research biobanking: A checklist for navigating complexity
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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
2024. Vol. 24, no 3, p. 139-150
Keywords [en]
biobanking, biomedical research, ELSI, informed consent, personal data, research ethics committees
National Category
Other Legal Research Criminology
Research subject
förvaltningsrätt
Identifiers
URN: urn:nbn:se:su:diva-219208DOI: 10.1111/dewb.12411ISI: 001022573400001PubMedID: 37428947Scopus ID: 2-s2.0-85165054209OAI: oai:DiVA.org:su-219208DiVA, id: diva2:1782760
Funder
European Commission, 654404Available from: 2023-07-17 Created: 2023-07-17 Last updated: 2025-02-20Bibliographically approved

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Reichel, Jane

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Tzortzatou‐Nanopoulou, OlgaAkyüz, KayaGoisauf, MelanieKozera, ŁukaszMežinska, SigneTh. Mayrhofer, MichaelaSlokenberga, SantaReichel, JaneCroxton, TalishieaZiaka, AlexandraMakri, Marina
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