Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action

Gille, Felix; Axler, Renata; Blasimme, Alessandro

doi:10.1089/bio.2020.0057

Cited by 8 publications

(10 citation statements)

References 15 publications

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“…All these components lead to the development of trust [ 2 , 5 ]. .Establishing trust is an essential element of good governance and is associated with achieving the long-term goals of biobanks [ 6 ]. Transparency, defined as the "provision of relevant and useful information in a timely, engaging, and understandable fashion," contributes to accountability, which leads to increased public trust in biobanks [ 6 ].…”

Section: Discussionmentioning

confidence: 99%

“….Establishing trust is an essential element of good governance and is associated with achieving the long-term goals of biobanks [ 6 ]. Transparency, defined as the "provision of relevant and useful information in a timely, engaging, and understandable fashion," contributes to accountability, which leads to increased public trust in biobanks [ 6 ]. If biobanks expect the public to donate their biospecimens and data, then there needs to be transparent knowledge regarding how data are governed, protected against privacy breaches, shared with third parties, linked with other data sets, and the kinds of research that uses the data sets, and the results of the research studies are communicated to the stakeholders.…”

Section: Discussionmentioning

confidence: 99%

“…These challenges include developing a business model that rely on dependable funding sources, enhancing operational efficiency, and building trusting governance arrangements with researchers and potential donors [ 4 , 5 ]. The establishment of trust requires methods to ensure transparency, accountability, and the active engagement of their communities [ 6 , 7 ].…”

Section: Introductionmentioning

confidence: 99%

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Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

et al. 2022

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Background Biobanks have recently been established in several low- and middle-income countries (LMICs) in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks. Methods In-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt (6), Jordan (1), and Sudan (1). Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45–75 min. After verbal consent, interviews were recorded and then transcribed. The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process. Results Biobank managers discussed the main challenges in establishing their biobanks. These included the staff’s lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders. Conclusion Managers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

et al. 2022

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“…Transparent governance for health data requires clear information for data circulation, data-sharing agreements, research objectives, and findings to be made available to the public [20]. In the context of biobank governance, transparency enables donors to better understand biobank governance and thereby make better, more informed decisions about sample and associated data donation as well as research participation [21]. Lack of transparency has the potential to undermine public trust in initiatives that involve large datasets such as biobanks [21].…”

Section: Transparency In Data Governancementioning

confidence: 99%

Ethical Considerations for Health Research Data Governance

Maseme¹

2023

Data Integrity and Data Governance

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Research involving humans often generates considerable data irrespective of the context in which the research is being conducted. This data must be protected from unauthorized access, use, and sharing as a means of safe-guarding research participants’ rights. Notwithstanding the fact that several jurisdictions globally have promulgated laws and regulations aimed at protecting individual citizens’ personal information, violation of privacy and related rights occurs in some instances. This could partly relate to a general lack of health research sector specific data governance policies and laws, which include data transfer agreements prevalent in most countries. The chapter therefore aims to cover the ethical aspects of health research data access, use, and sharing as a means of enabling health research institutions and policymakers to develop robust data governance structures and procedures. The scope of the chapter covers health research data generated in empirical research as well as that which is produced within a medical laboratory research context, i.e., human sample associated data.

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“…This assumption implies that, beyond the obvious need to illustrate the project to patients and to obtain their consent to the donation of their biomaterials, the general public should be informed about the nature of the biobanking activity and its purposes [ 53 , 54 ]. It is to be considered of paramount importance that all the subjects of the community be given the opportunity to know, at least in rough terms, the purposes of the biobanking activity and the guarantees offered to citizens by the biobank [ 55 , 56 , 57 ] and it is highly important to make the public aware of the objectives and methods of collecting and processing biomaterials and related data [ 58 ].…”

Section: The Challenges Of Oocyte Biobanks: Governance Harmonization ...mentioning

confidence: 99%

Oocyte Biobanks: Old Assumptions and New Challenges

Tozzo

2021

BioTech

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The preservation of fertility is a clinical issue that has been emerging considerably in recent decades, as the number of patients of childbearing age who risk becoming infertile for many reasons is increasing. The cryopreservation technique of oocytes has been developed for many years and nowadays constitutes a method of safe storage with impressive efficacy and high rates of successful thawing. The storage and use for research of oocytes taken for medical or non-medical can be carried out by both public and private structures, through egg sharing, voluntary egg donation and so-called “social freezing” for autologous use. This paper focuses on the oocyte bank as an emerging cryopreservation facility, in which a collaboration between public and private and the creation of a network of these biobanks can be useful in enhancing both their implementation and their functions. Good oocyte biobank practice would require that they be collected, stored, and used according to appropriate bioethical and bio-law criteria, collected and stored according to procedures that guarantee the best preservation of their structural components and a high level of safety, connected with appropriate procedures to protect the rights and privacy of the parties involved and associated with the results of the bio-molecular investigations that will be carried out gradually.

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Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action

Cited by 8 publications

References 15 publications

Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

Ethical Considerations for Health Research Data Governance

Oocyte Biobanks: Old Assumptions and New Challenges

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