Title

Ethical, Legal, and Social Implications (ELSI) at the Intersection of Genomics and Infectious Disease

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Debra JH Mathews, PhD, MA
Work Title/Institution
Center for Bridging Infectious Disease, Genomics, and Society (BRIDGES), Assistant Director for Science Programs at the Berman Institute of Bioethics and Associate Professor of Genetic Medicine at Johns Hopkins University
Name & Degree
Sheethal Jose
Work Title/Institution
PhD Student in Bioethics and Health Policy at the Center for Bridging Infectious Disease, Genomics, and Society (BRIDGES), Johns Hopkins Berman Institute of Bioethics and the Bloomberg School of Public Health

Introduction

Scientific and technological advances in the field of genomics have the potential to enable targeted clinical and public health measures to manage infectious disease outbreaks. The convergence of the fields of genomics and public health in the context of infectious disease raises a unique constellation of ethical, legal, and social issues that must be addressed before genomic data and technology are leveraged at the population level. Similarly, both pathogen genomics and host (or human) genomics play a role in the clinical management of infectious disease and raise their own ELSI issues. The COVID-19 pandemic, coupled with advances in genomic sequencing technology, has provided a global laboratory for identifying, for example, host genomic factors that influence an individual’s risk of severe COVID-19 disease. The identification of such factors has implications for both clinical management and public health practice.

While not an exhaustive list, this collection provides an introduction to the ELSI literature at the intersection of genomics and infectious diseases in both the clinical and public health contexts. The articles listed below focus primarily on the examples…

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Scientific and technological advances in the field of genomics have the potential to enable targeted clinical and public health measures to manage infectious disease outbreaks. The convergence of the fields of genomics and public health in the context of infectious disease raises a unique constellation of ethical, legal, and social issues that must be addressed before genomic data and technology are leveraged at the population level. Similarly, both pathogen genomics and host (or human) genomics play a role in the clinical management of infectious disease and raise their own ELSI issues. The COVID-19 pandemic, coupled with advances in genomic sequencing technology, has provided a global laboratory for identifying, for example, host genomic factors that influence an individual’s risk of severe COVID-19 disease. The identification of such factors has implications for both clinical management and public health practice.

While not an exhaustive list, this collection provides an introduction to the ELSI literature at the intersection of genomics and infectious diseases in both the clinical and public health contexts. The articles listed below focus primarily on the examples of SARS-CoV-2/COVID-19 and HIV/AIDS, but the ELSI issues raised are applicable across the infectious disease spectrum. The first set of articles provides historical context for the concept of disease causation and the blurring boundary between infectious and genetic diseases. The next two groups of articles focus on the different ELSI issues raised by host genomics (using the example of COVID-19) and pathogen genomics (using the example of HIV), respectively, in research, clinical, and public health contexts. The fourth set of articles provides a glimpse into the history of race and racism in both genomics and infectious disease and highlights the critical need for viewing the ELSI issues raised at this intersection through a health disparities lens. Lastly, the fifth group of articles attempts to provide concrete ways of addressing these ELSI issues and identifies areas for further research.

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Historical pandemic response and the evolution of the understanding of disease causation
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The intersection of host genomics and infectious diseases with a focus on SARS-CoV-2/COVID-19
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Pathogen genomics with a focus on HIV/AIDS
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Racism, genomics, and infectious disease
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Conceptual and empirical responses to the blurring boundary
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Tags
genomics and infectious disease
Covid-19
ethical conduct of phylogenetic studies
host genome testing
data justice
precision public health

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About ELSIhub Collections

ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information and offers a mentored editorial experience for ELSI early career researchers and trainees.