دورية أكاديمية
Risk mapping for better governance in biobanking: the case of biobank.cy.
العنوان: | Risk mapping for better governance in biobanking: the case of biobank.cy. |
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المؤلفون: | Akyüz K; Department of ELSI Services and Research, BBMRI-ERIC, Graz, Austria., Goisauf M; Department of ELSI Services and Research, BBMRI-ERIC, Graz, Austria., Martin GM; Department of Sociology, University of Malta, Msida, Malta., Mayrhofer MT; Department of ELSI Services and Research, BBMRI-ERIC, Graz, Austria., Antoniou S; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus., Charalambidou G; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus., Deltas C; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus.; University of Cyprus Medical School, Nicosia, Cyprus., Malatras A; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus., Papagregoriou G; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus., Stefanou C; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus., Voutounou M; Biobank.cy Center of Excellence in Biobanking and Biomedical Research, Nicosia, Cyprus. |
المصدر: | Frontiers in genetics [Front Genet] 2024 Jun 14; Vol. 15, pp. 1397156. Date of Electronic Publication: 2024 Jun 14 (Print Publication: 2024). |
نوع المنشور: | Journal Article |
اللغة: | English |
بيانات الدورية: | Publisher: Frontiers Research Foundation Country of Publication: Switzerland NLM ID: 101560621 Publication Model: eCollection Cited Medium: Print ISSN: 1664-8021 (Print) Linking ISSN: 16648021 NLM ISO Abbreviation: Front Genet Subsets: PubMed not MEDLINE |
أسماء مطبوعة: | Original Publication: Lausanne : Frontiers Research Foundation. |
مستخلص: | Introduction: Risk governance is central for the successful and ethical operation of biobanks and the continued social license for being custodians of samples and data. Risks in biobanking are often framed as risks for participants, whereas the biobank's risks are often considered as technical ones. Risk governance relies on identifying, assessing, mitigating and communicating all risks based on technical and standardized procedures. However, within such processes, biobank staff are often involved tangentially. In this study, the aim has been to conduct a risk mapping exercise bringing biobank staff as key actors into the process, making better sense of emerging structure of biobanks. Methods: Based on the qualitative research method of situational analysis as well as the card-based discussion and stakeholder engagement processes, risk mapping was conducted at the biobank setting as an interactive engagement exercise. The analyzed material comprises mainly of moderated group discussions. Results: The findings from the risk mapping activity are framed through an organismic metaphor: the biobank as a growing , living organism in a changing environment , where trust and sustainability are cross-cutting elements in making sense of the risks. Focusing on the situatedness of the dynamics within biobanking activity highlights the importance of prioritizing relations at the core of risk governance and promoting ethicality in the biobanking process by expanding the repertoire of considered risks. Conclusion: With the organismic metaphor, the research brings the diverse group of biobank staff to the central stage for risk governance, highlighting how accounting for such diversity and interdependencies at the biobank setting is a prerequisite for an adaptive risk governance. Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. (Copyright © 2024 Akyüz, Goisauf, Martin, Mayrhofer, Antoniou, Charalambidou, Deltas, Malatras, Papagregoriou, Stefanou and Voutounou.) |
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فهرسة مساهمة: | Keywords: ELSI; biobank; genetics; research infrastructure; risk assessment; risk governance; risk mapping |
تواريخ الأحداث: | Date Created: 20240701 Latest Revision: 20240702 |
رمز التحديث: | 20240702 |
مُعرف محوري في PubMed: | PMC11211562 |
DOI: | 10.3389/fgene.2024.1397156 |
PMID: | 38948356 |
قاعدة البيانات: | MEDLINE |
تدمد: | 1664-8021 |
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DOI: | 10.3389/fgene.2024.1397156 |