■关于生物银行伦理的文献往往忽视了生物银行的实际操作。管理的道德要求使用生物库资源进行有益的科学。网络生物银行已经出现,以增加生物银行资源的科学利益,但是对于网络操作是否以及如何实现这一目标知之甚少。
■作为关于伦理的更大研究的一部分,legal,和联网生物样本的社会影响(ELSI),我们对31个网络生物银行的代表进行了38次采访。访谈探讨了网络的运作。我们使用主题分析来检查受访者如何描述与管理生物银行资源相关的三个主题-资金,利用率,和可持续性。
■我们的结果突出表明,利用率,可持续性不仅对生物银行的运作至关重要,但也有道德义务,生物银行家欠利益相关者管理资源。基于先前的研究,我们假设受访者将网络描述为有利于增加资金,利用率,网络的可持续性。受访者通常发现联网生物负载有价值,但是网络并不一定会增加资金,利用率,和可持续性。
■此处提供的结果支持纳入资金,利用率,和可持续性作为生物样本和联网生物样本实践中伦理关注的主题。这些问题植根于生物者对其伴侣的管理义务,客户调查员,和参与者。通过网络促进管理的目标需要大量的时间和精力来建立治理模式,以履行每个生物银行对其捐助者的义务,并推进网络的集体目标。最后,我们提出了受访者提出的建议,以解决改善这些管理方面的问题。
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.