Data experts to explore pandemic’s ethical challenges

By Maya Bell

Data experts to explore pandemic’s ethical challenges

By Maya Bell
Amid increased public health surveillance and contact tracing, a July 23 panel discussion will focus on the tricky balance between saving lives and protecting personal privacy.

In August of 1854, in the London suburb of Soho, an obstetrician named John Snow believed that water contaminated by sewage was responsible for a cholera outbreak that killed more than 600 people. He would prove it by plotting the deaths on a grid and investigating each deceased person’s use of the neighborhood well water he suspected as the culprit.

Nearly 166 years later, Kenneth W. Goodman is reminded of Snow when thinking of the tricky ethical challenges the coronavirus pandemic poses for data scientists and users in the age of big data—which is among the topics Goodman and two other experts will address during a Zoom discussion on “Data Ethics during COVID-19” on Thursday, July 23, from 4 to 5 p.m.

“What John Snow pioneered was shoe-leather epidemiology,” said Goodman, who is the founder and director of the Institute for Bioethics and Health Policy at the Miller School of Medicine and who also leads the research program on data ethics and society at the University of Miami’s Institute for Data Science and Computing (IDSC), which is hosting the forum. 

“He gathered data to save lives, which we’ve been doing with case studies for thousands of years but in more primitive forms,” Goodman continued. “It used to be memory. It used to be paper. It used to be papyrus scrolls. But data on a papyrus scroll is not entirely unlike data on a supercomputer. It’s all about learning from each patient to improve health, and we need to continue doing that—especially now. Information and data are essential to mitigating public health crises, but we have to be careful how we collect, store, and share data to protect individual privacy.” 

Free and open to the public, the panel discussion will be moderated by Nicholas Tsinoremas, director of the IDSC, and, in addition to Goodman, will feature Brian Lee, senior advisor for informatics at the Centers for Disease Control and Prevention (CDC), and Soyeon Ahn, professor and chair of the Department of Educational and Psychological Studies in the University’s School of Education and Human Development.

The panelists, who will answer questions, plan to address how their work is informed by public health surveillance and analysis; the ethical considerations of data governance, analysis, collection, curation, and sharing; and the creation and dissemination of scientific policies that affect public behavior and shape public trust.

The latter topic, Goodman said, will undoubtedly engender discussion about the Trump administration’s recent order requiring hospitals to send information on their COVID-19 patients, the number of beds and ventilators they have available, and other information essential to tracking the pandemic to its Department of Health and Human Service’s private database, rather than the CDC’s public one. 

The order alarmed many health experts, including Goodman, who fear researchers and health officials will no longer have access to the data needed to make projections and decisions about the pandemic.  

“The CDC has been, for generations, the go-to place for data collection and analysis, so this 11th-hour change is cause for grave concern,” Goodman said. “That’s not a political observation. It’s to say we want scientists handling the data, not politicians. The CDC should remain the collector, guardian, and custodian of these data.”

Register now for the July 23 discussion on “Data Ethics During COVID-19.”