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. |
|---|---|
| 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.) |
| References: | Biopreserv Biobank. 2016 Jun;14(3):195-200. (PMID: 27145287) AIDS. 2013 Jan 28;27(3):303-12. (PMID: 23135167) Big Data Soc. 2017 Dec 8;4(2):2053951717742417. (PMID: 32431852) Front Public Health. 2018 Sep 05;6:253. (PMID: 30234093) Eur J Hum Genet. 2021 Apr;29(4):687-698. (PMID: 33408362) Eur J Hum Genet. 2012 Nov;20(11):1105-11. (PMID: 22713808) J Pers Med. 2022 Dec 09;12(12):. (PMID: 36556260) Dev World Bioeth. 2023 Jul 10;:. (PMID: 37428947) Sci Technol Human Values. 2010 May 1;35(3):330-355. (PMID: 20526462) Sci Eng Ethics. 2021 Apr 21;27(3):30. (PMID: 33881646) Methods Mol Biol. 2019;1897:31-41. (PMID: 30539432) Sci Technol Human Values. 2017 May;42(3):460-490. (PMID: 28458406) Eur J Hum Genet. 2021 Apr;29(4):649-656. (PMID: 33249421) Nat Rev Genet. 2012 Apr 03;13(5):371-6. (PMID: 22473380) Eur J Hum Genet. 2020 May;28(5):609-626. (PMID: 31844175) J Law Med Ethics. 2020 Mar;48(1):172-182. (PMID: 32342789) Life Sci Soc Policy. 2021 Dec 13;17(1):10. (PMID: 34903285) Eur J Hum Genet. 2020 Aug;28(8):989-996. (PMID: 32424324) Biopreserv Biobank. 2017 Jun;15(3):253-263. (PMID: 27977307) F1000Res. 2016 Jun 09;5:1307. (PMID: 27366320) Nat Rev Genet. 2004 Nov;5(11):866-73. (PMID: 15520796) Public Underst Sci. 2019 Apr;28(3):275-289. (PMID: 30324869) JAMA. 2013 Nov 27;310(20):2191-4. (PMID: 24141714) J Med Philos. 1998 Jun;23(3):334-41. (PMID: 9736195) Eur J Health Law. 2010 Mar;17(2):191-204. (PMID: 20443450) J Int Bioethique Ethique Sci. 2017 Oct 27;28(3):113-117. (PMID: 29561093) Clin Biochem. 2014 Mar;47(4-5):300-8. (PMID: 24406300) Biopreserv Biobank. 2014 Feb;12(1):60-8. (PMID: 24620771) BMC Med Ethics. 2017 Apr 4;18(1):24. (PMID: 28376776) Biopreserv Biobank. 2022 Jun;20(3):224-228. (PMID: 34582255) Public Underst Sci. 2014 Jan;23(1):48-52. (PMID: 24434712) Soc Stud Sci. 2014 Oct;44(5):736-57. (PMID: 25362832) Hist Philos Life Sci. 2013;35(3):449-67. (PMID: 24779112) Hum Genet. 2011 Sep;130(3):377-82. (PMID: 21785980) EPMA J. 2021 Mar 10;12(1):15-25. (PMID: 33717371) Soc Sci Med. 2011 Aug;73(3):367-74. (PMID: 21726926) BMC Med Ethics. 2016 Jul 12;17(1):39. (PMID: 27405974) Eur J Health Law. 2004 Mar;11(1):93-107. (PMID: 15285199) Biosocieties. 2023 Mar 28;:1-28. (PMID: 37359141) Res Involv Engagem. 2015 Jun 25;1:4. (PMID: 29062493) PLoS One. 2019 Sep 18;14(9):e0221496. (PMID: 31532777) |
| 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 |
Full Text Finder | تدمد: | 1664-8021 |
|---|---|
| DOI: | 10.3389/fgene.2024.1397156 |