ELSIcon2022 Panel: Permeable Membranes: How the blurring of boundaries and merging of silos should reshape ELSI research

ELSIcon2022 • Panel Session 7 • June 1, 2022

Brian Hutler, Debra Matthews, Rebecca Wilbanks

Advancing understanding of the mechanisms of disease point to a growing number of examples of 'genetic diseases' with an infectious component, and of 'infectious diseases' with a genetic component. This point has been playing out on a global stage over the past two years, as multiple large-scale genomic projects have searched for human genetic variation associated with variability in COVID-19 susceptibility, infectivity, and disease severity. This evolution in our understanding creates an overlapping or merging of what had formerly been understood as separate categories of disease, an observation noteworthy for both the change it signals in the understanding of disease mechanisms and for the ethical, legal and social implications (ELSI) it seems to invoke.

This blurring and overlapping is happening between many categories relevant to ELSI research; for example, between genetic testing for health, ancestry, recreation, and law enforcement. Across areas of science and emerging technologies, previously understood silos are overlapping and merging in ways that suggest that we need new ways of assessing and developing oversight for science, technology and their use. These shifting boundaries - between infectious and genetic disease, and between uses of emerging technologies - are creating an important and, as yet, understudied area of inquiry. Specifically, what ELSI issues do such fluid boundaries raise?

This interdisciplinary panel will analyze the changing conceptualizations of the relationship between infectious and genetic disease from the historical and legal perspectives, and the ELSI of the evolving understanding(s) of this dynamic in the broader context of emerging technologies.