Ethical, legal, and social implications in research biobanking: A checklist for navigating complexity

Olga Tzortzatou-Nanopoulou, Kaya Akyuez, Melanie Goisauf, Lukasz Kozera, Signe Mezinska, Michaela Th Mayrhofer, Santa Slokenberga, Jane Reichel, Talishiea Croxton, Alexandra Ziaka, Marina Makri

Research output: Contribution to journalArticleScientificpeer-review

Abstract

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.
Original languageEnglish
Pages (from-to)139-150
Number of pages12
JournalDeveloping World Bioethics
Volume24
Issue number3
DOIs
Publication statusPublished - Sept 2024

Keywords

  • Elsi
  • Biobanking
  • Biomedical research
  • Informed consent
  • Personal data
  • Research ethics committees

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