Mayo Clinic Biomedical Ethics Research Program, Rochester, Minnesota, USA.
Department of Humanities, College of Medicine, Pennsylvania State University, Hershey, Pennsylvania, USA.
Public Health Genomics. 2020;23(3-4):77-89. doi: 10.1159/000507057. Epub 2020 May 12.
To address ethical concerns about the of future research authorization, biobanks employing a broad model of consent can design ongoing communication with contributors. Notifying contributors at the time of sample distribution provides one form of communication to supplement broad consent. However, little is known about how community-informed governance might anticipate contributor responses and inform communication efforts.
We explored the attitudes of members of a three-site Community Advisory Board (CAB) network. CAB members responded to a hypothetical proposal for notifying biobank contributors at the time of sample distribution to researchers utilizing the biobank.
We used regularly scheduled CAB meetings to facilitate 3 large-group and 6 small-group discussions. Discussions were audio-recorded, transcribed, and analyzed for thematic content using descriptive thematic analysis.
The results challenged our expectation of general support for the proposed communications. While CAB members identified some advantages, they were concerned about several potential harms to biobank contributors and the biobank. The CABs understood biobank communication in terms of an ongoing relationship with the biobank and a personal contribution to research.
Our findings contribute to the emerging literature on community engagement in biobanking. Additional communication with biobank contributors can serve a variety of value-based objectives to supplement broad consent. Design of communication efforts by biobanks can be improved by CAB members' anticipation of the unintended consequences of additional contact with contributors. CAB members' holistic interpretation of communication efforts suggests that biobank leadership considers all communication options as part of a more comprehensive communications strategy.
为了解决未来研究授权的伦理问题，采用广泛同意模式的生物库可以与贡献者进行持续的沟通。在样本分发时通知贡献者是补充广泛同意的一种沟通形式。然而，对于社区知情治理如何预测贡献者的反应并为沟通工作提供信息，我们知之甚少。
我们探讨了三站点社区咨询委员会（CAB）网络成员的态度。CAB 成员对在样本分发给利用生物库的研究人员时通知生物库贡献者的假设提议做出了回应。
我们使用定期的 CAB 会议来促进 3 个大组和 6 个小组的讨论。讨论内容被录音、转录，并使用描述性主题分析进行主题内容分析。
结果与我们对拟议沟通的普遍支持的预期相悖。虽然 CAB 成员确定了一些优势，但他们对生物库贡献者和生物库可能存在的几种潜在危害表示担忧。CAB 以与生物库的持续关系和对研究的个人贡献来理解生物库沟通。
我们的研究结果为生物库中社区参与的新兴文献做出了贡献。额外的生物库贡献者沟通可以为补充广泛同意提供各种基于价值的目标。通过 CAB 成员对与贡献者额外接触的意外后果的预期，可以改进生物库的沟通工作设计。CAB 成员对沟通工作的整体解释表明，生物库领导层将所有沟通选项都视为更全面沟通策略的一部分。
