Jacobs, Danielle; Troy McDaniel; Arvind Varsani; Rolf U. Halden; Stephanie Forrest and Heewook Lee
Analysis of municipal wastewater, or sewage for public health applications is a rapidly expanding field aimed at understanding emerging epidemiological trends, including human and disease migration. The newly gained ability to extract and analyze genetic material from wastewater poses important societal and ethical questions, including: How to safeguard data? Who owns genetic data recovered from wastewater? What are the ethical and legal issues surrounding its use? In the U.S., both corporate and legal policies regarding privacy have been historically reactive instead of proactive. In wastewater-based epidemiology (WBE), the pace of innovation has outpaced the ability of social and legal mechanisms to keep up. To address this discrepancy, early and robust discussions of the research, policies, and ethics surrounding WBE analysis and genetics is needed. This paper contributes to this discussion by examining ownership issues for human genetic data recovered from wastewater and the uses to which it may be put. We focus particularly on the risks associated with personally identifiable data, highlighting potential risks, relevant privacy-enhancing technologies, and appropriate ethics. The paper proposes an approach for people conducting WBE studies to help them systematically consider the ethical and privacy implications of their work.