Cadigan R Jean, Ponsaran Roselle, Rich Carla, Timmons Josie, Brothers Kyle B, Goldenberg Aaron J
Department of Social Medicine, University of North Carolina Chapel Hill School of Medicine, Chapel Hill, North Carolina, USA.
Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA.
AJOB Empir Bioeth. 2025 Jan-Mar;16(1):42-51. doi: 10.1080/23294515.2024.2399533. Epub 2024 Sep 9.
The literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal.
As part of a larger study on the ethical, legal, and social implications (ELSI) of networked biobanking, we conducted 38 interviews with representatives of 31 networked biobanks. Interviews explored operations of the networks. We used thematic analysis to examine how respondents describe three topics associated with stewarding biobank resources-funding, utilization, and sustainability.
Our results highlight that funding, utilization, and sustainability are critical not only to the operation of biobanks, but also to the ethical obligations that biobankers owe to stakeholders to steward the resources. Based on prior research, we hypothesized that respondents would describe networking as beneficial to increasing funding, utilization, and sustainability of the network. Respondents generally found value in networked biobanking, but networking did not necessarily increase funding, utilization, and sustainability.
The results presented here support inclusion of funding, utilization, and sustainability as topics of ethical concern in the practice of biobanking and networked biobanking. These issues are rooted in the stewardship obligations that biobankers feel to their partners, client investigators, and participants. The goal of promoting stewardship through networking requires significant time and effort to build governance models that honor the obligations of each individual biobank to their donors and advance the collective goals of the network. We conclude with suggestions offered by respondents to address improving these aspects of stewardship.
关于生物样本库伦理的文献常常忽视生物样本库的实际运作。管理伦理要求生物样本库资源用于开展有益的科学研究。联网生物样本库的出现是为了提高生物样本库资源的科学效益，但对于联网运作是否以及如何实现这一目标却知之甚少。
作为一项关于联网生物样本库的伦理、法律和社会影响（ELSI）的大型研究的一部分，我们对31个联网生物样本库的代表进行了38次访谈。访谈探讨了网络的运作情况。我们采用主题分析法来研究受访者如何描述与管理生物样本库资源相关的三个主题——资金、利用和可持续性。
我们的结果表明，资金、利用和可持续性不仅对生物样本库的运作至关重要，而且对生物样本库管理者向利益相关者管理资源所应承担的伦理义务也至关重要。基于先前的研究，我们假设受访者会将联网描述为有利于增加网络的资金、利用和可持续性。受访者普遍认为联网生物样本库有价值，但联网并不一定能增加资金、利用和可持续性。
此处呈现的结果支持将资金、利用和可持续性作为生物样本库和联网生物样本库实践中伦理关注的主题。这些问题源于生物样本库管理者对其合作伙伴、客户研究人员和参与者的管理义务。通过联网促进管理的目标需要大量时间和精力来构建治理模式，以尊重每个生物样本库对其捐赠者的义务，并推进网络的集体目标。我们以受访者提出的改善这些管理方面的建议作为结论。
