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 participantsâ€™ 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 participantsâ€™ views regarding barriers toâ€”and facilitators ofâ€”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.