Transparency, trust, and community welfare: towards a precision public health ethics framework for the genomics era
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COMMENT
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Transparency, trust, and community welfare: towards a precision public health ethics framework for the genomics era Eric T. Juengst1* and Annelies Van Rie2
Abstract Infectious disease control is experiencing a paradigm shift, as pathogen sequencing technologies and digital applications are increasingly implemented for control of diseases such as tuberculosis, Ebola, and COVID-19. A new ethical framework should be a critical part of this emerging paradigm to ensure that the benefit of precision public health interventions based on advances in genomics research is not outweighed by the risks they pose to individuals, families, and vulnerable segments of the population. We suggest that the ethical framework guiding practice in this domain combines standard precepts from public health ethics with emerging ethics principles from precision medicine. Keywords: Pathogen sequencing, Genomic epidemiology, Precision public health, Ethics
Precision public health Precision public health was first defined by the Health Department of Western Australia as “the application and combination of new and existing technologies to more precisely describe and analyse individuals and their environment, tailor preventive interventions for at-risk groups, and improve the overall health of the population” [1]. Using sequencing data of pathogens can result in unprecedented levels of speed and accuracy of contact and source investigations. Digitalizing and sharing this data across public health programs can expedite anticipatory planning and interventions [2]. These developments pose new ethical challenges, since collecting and using genomics data on pathogens to target populations for public health interventions requires negotiations between individual rights, target group interests, and the larger public welfare. While none of the relevant concerns—personal privacy risks, risks of group harms * Correspondence: [email protected] 1 Center for Bioethics, School of Medicine, University of North Carolina at Chapel Hill, 333 MacNider Hall, Chapel Hill, NC 27599-7240, USA Full list of author information is available at the end of the article
through stigmatization and blame, or population health—are foreign to public health, the efficiency and power of precision public health methods can both fuel and focus them in unprecedented ways. Here we discuss how traditional public health ethics and the ethos of genomic medicine can come together to form a hybrid ethical framework for precision public health, adapted to the big data challenges of the twenty-first century.
Public health ethical principles Four traditional principles from public health ethics help lay the foundations for the use of precision tools like pathogen sequencing. The priority principle ensures that health issues that threaten social stability supersede individual interests, justifying interventions such as quarantining. The harm principle allows public health authorities to restrict personal liberties for disease control without the consent of individuals
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