Is Real-Time ELSI Realistic?
Is Real-Time ELSI Realistic?
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DOI：
10.1080/23294515.2020.1722289
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发表时间：
2020-04-01
影响因子：
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通讯作者：
Lazaro-Munoz, Gabriel
中科院分区：
文献类型：
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作者：
Conley, John M;Prince, Anya E R;Lazaro-Munoz, Gabriel
背景：越来越多的文献提出了一个怀疑的问题，即尖端科学研究是否能够实时识别和解决更广泛的伦理和政策问题。在基因组学中，问题是：ELSI能够实时地为基因组学做出贡献，还是会被降级为事后的局外人批评的历史角色？我们在基因组筛选项目的背景下解决这个问题，我们作为嵌入式实时ELSI研究人员和观察员，从最初的设计到结论。方法：作为ELSI研究设计的一部分，该项目包括一个正在进行的反思性人种志，作者在其中研究了其设计和实施的过程。作者是真正的参与者观察者，作为各种任务导向小组的成员，同时记录会议和其他事件，以进行定性分析。在项目结束时，我们还对多个参与者进行了访谈并进行了分析。结果：我们的实时ELSI计划有成功和挑战的混合记录。如果我们将成功定义为ELSI研究人员有机会充分参与项目并使ELSI的观点被听到，那么我们的评估在很大程度上是积极的。然而，如果我们将成功定义为实时ELSI的贡献改变了GeneScreen项目的基因组或公共卫生方面的方向，或者经过仔细考虑确认了现状的适当性，那么我们只能确定几个例子。虽然我们在餐桌上有一席之地，但在很大程度上，我们是被容忍的客人。结论：我们得出结论，实时ELSI影响存在重大障碍。困难不在于有意排除ELSI的观点，而在于基因组研究特有的因素，包括知识差异、认识论偏差以及时间和金钱的压力。
Background: A growing literature has raised-skeptically-the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against the background of a genomic screening project where we participated as embedded, real-time ELSI researchers and observers, from its initial design through its conclusion.Methods: As part of the ELSI study design, the project included an ongoing reflexive ethnography in which the authors studied the process of its design and implementation. The authors were true participant observers, serving as members of various task-oriented groups while recording meetings and other events for ongoing qualitative analysis. We also conducted and analyzed interviews of multiple participants at the conclusion of the project.Results: Our real-time ELSI initiative had a mixed record of successes and challenges. If we define success as ELSI researchers having had an opportunity to participate fully in the project and to make the ELSI perspective heard, then our assessment is largely positive. If, however, we define successes as instances where real-time ELSI contributions changed the direction of the genomic or public health aspects of the GeneScreen project or, after careful deliberation, confirmed the appropriateness of the status quo, then we can identify only a few examples. While we had a seat at the table, we were, for the most part, tolerated guests.Conclusions: We conclude that there are significant barriers to real-time ELSI influence. The difficulty does not reside in any intended exclusion of an ELSI perspective, but in factors endemic to genomic research, including knowledge disparities, epistemological biases, and the pressures of time and money.