RAPID: Assessing Ethical Challenges in Conducting Do-it-yourself (DIY) Science During the COVID-19 Pandemic

美国致力于确保其赞助的研究是合乎道德的，要求对某些类型的研究进行监督，比如涉及人类或动物的研究。然而，个人在家里、车库或社区实验室进行的DIY(DIY)科学研究通常不受这些研究道德法规的约束。DIY社区参与者可能遇到的道德挑战在新冠肺炎疫情中尤为突出，这促使一个由DIY研究人员组成的国际小组走到一起，寻求诊断和治疗方法。由于参与这些努力的DIY主要是通过可公开访问的在线渠道进行交流，因此这场流行病提供了一个极好的机会，可以在集中和加速的背景下更多地了解DIY研究中的伦理问题。该项目旨在评估不受监管的DIY研究社区如何在持续的大流行期间应对道德挑战。这将导致更好地理解DIY科学家如何在危机中识别、处理和解决他们的工作中的伦理问题，并实际地理解在不受监管的领域存在哪些伦理研究的障碍或促进者。通过在线观察和采访，该项目考察了开源新冠肺炎项目的参与者如何就三个核心伦理问题进行谈判：生物安全和危害、验证和复制以及作者身份和信用。第一阶段包括分析国际DIY科学平台上项目成员之间的数字通信，该平台名为One Giant Lab，成千上万的人在这个平台上合作开源新冠肺炎项目。第二阶段涉及对约40名JOGL参与者进行后续访谈，以调查参与者与道德操守有关的评论、道德挑战如何得到解决或无法得到解决，以及对最终结果是否一致和满意。访谈将探讨参与者对不受监管的伦理研究的障碍和促进者的看法，以及在这种情况下他们会发现哪些工具是有帮助的。这项研究将大大促进我们对危机时期不受监管的研究如何以及在哪里出现伦理问题，以及开放科学界的参与者如何应对这些挑战的理解。该项目将为开发更好的工具和方法提供建议，以帮助确保DIY研究的道德行为，并将帮助监管机构和政策制定者制定更明智的方法来处理不受监管的研究的道德行为。该建议由BIO和OISE理事会通过ER2计划提供资金。该奖项反映了NSF的法定使命，并通过使用基金会的智力价值和更广泛的影响审查标准进行评估，被认为值得支持。

The United States works to ensure that the research it sponsors is conducted ethically by requiring oversight of certain kinds of research, such as that involving humans or animals. However, do-it-yourself (DIY) scientific research conducted by individuals in their homes, garages, or community labs often is not subject to these research ethics regulations. The ethical challenges that participants in DIY communities may encounter are particularly salient in the COVID-19 pandemic, which has spurred an international group of DIY researchers to come together in pursuit of diagnostics and treatments. Because DIYers participating in these efforts are primarily communicating via publicly accessible online outlets, the pandemic offers an excellent opportunity to learn more about ethical issues in DIY research in a concentrated and accelerated setting. The project aims to assess how unregulated DIY research communities negotiate ethical challenges during an ongoing pandemic. It will lead to a better understanding of how DIY scientists identify, approach, and resolve ethical issues in their work in crises, and to practical understanding of what barriers or facilitators of ethical research exist in unregulated domains. Through online observations and interviews, this project examines how participants in open-source COVID-19 projects negotiate three central ethical issues: biosafety and harm, validation and replication, and authorship and credit. Phase 1 consists of analyzing digital communications amongst project members on an international DIY science platform called Just One Giant Lab (JOGL), where thousands of individuals are collaborating on open-source COVID-19 projects. Phase 2 involves conducting follow-up interviews with approximately 40 JOGL participants to probe participants’ ethics-related comments, how ethical challenges were resolved or were unable to be resolved, and whether there was agreement with and satisfaction about eventual outcomes. The interviews will explore participants’ views regarding barriers to—and facilitators of—unregulated ethical research, and what tools they would have found helpful in that context. This research will significantly advance our understanding of how and where ethical issues arise in unregulated research during times of crisis, and how participants in open science communities negotiate these challenges. This project will result in recommendations for developing better tools and approaches to help ensure the ethical conduct of DIY research, and will assist regulators and policymakers with the development of more informed approaches to ethics in unregulated research.This proposal was funded through the ER2 program by the BIO and OISE directorates.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.