Ethics and Governance for Digital Disease Surveillance

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Digital epidemiology–the use of data generated outside the public health system for disease surveillance–has been in use for more than a quarter century…. But several countries have taken digital epidemiology to the next level in responding to COVID-19. Focusing on core public health functions of case detection, contact tracing, and isolation and quarantine, we explore ethical concerns raised by digital technologies and new data sources in public health surveillance during epidemics. For example, some have voiced concern that trust and participation in such approaches may be unevenly distributed across society; others have raised privacy concerns. Yet counterbalancing such concerns is the argument that “sometimes it is unethical not to use available data”; some trade-offs may be not only ethically justifiable but ethically obligatory. The question is not whether to use new data sources–such as cellphones, wearables, video surveillance, social media, internet searches and news, and crowd-sourced symptom self-reports–but how.
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Michelle M. Mello Michelle Mello (BA ’93) is a leading empirical health law scholar whose research is focused on understanding the effects of law and regulation on health care delivery and population health outcomes. She holds a joint appointment at the Stanford University School of Medicine in the Department of Medicine. Mello is the author of more than 200 articles on medical liability, public health law, pharmaceuticals and vaccines, biomedical research ethics and governance, health information privacy, and other topics. Her investigations into the dynamics of medical malpractice litigation, the effects of medical liability reforms, the ability of hospitals to shift costs of medical errors to others, and allocating responsibility for medical errors between hospital systems and individual physicians have been particularly impactful. Mello’s publications appear in medical, health policy, and law journals, and she is a frequent contributor to the New England Journal of Medicine. (Full bio). |