Ethical, Legal, and Social Implications (ELSI) at the Intersection of Genomics and Infectious Disease
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…
- White, A. I. R. (2018). Global risks, divergent pandemics: Contrasting responses to bubonic plague and smallpox in 1901 Cape Town. Social Science History, 42(1), 135-158.
- Juengst, E. T. (2000). Concepts of disease after the Human Genome Project. In S. Wear, J. J. Bono, G. Logue, & A. McEvoy (Eds.), Ethical issues in health care on the frontiers of the twenty-first century (pp. 127-154). Springer, Dordrecht.
- Worboys, M. (2001). From heredity to infection? Tuberculosis, 1870-1890. In J.-P. Gaudillière & I. Löwy (Eds.) Heredity and infection: The history of disease transmission (1st ed., pp. 81-100). Routledge.
- Geller, G., Dvoskin, R., Thio, C. L., Duggal, P., Lewis, M. H., Bailey, T. C., Sutherland, A., Salmon, D. A., & Kahn, J. P. (2014). Genomics and infectious disease: A call to identify the ethical, legal and social implications for public health and clinical practice. Genome Medicine, 6(11), 1-13.
- Geller, G., Duggal, P., Thio, C. L., Mathews, D., Kahn, J. P., Maragakis, L. L., & Garibaldi, B. T. (2020). Genomics in the era of COVID-19: Ethical implications for clinical practice and public health. Genome Medicine, 12(1), 1-4.
- Milne, R. (2020). Societal considerations in host genome testing for COVID-19. Genetics in Medicine, 22(9), 1464-1466.
- Coltart, C. E., Hoppe, A., Parker, M., Dawson, L., Amon, J. J., Simwinga, M., Geller, G., Henderson, G., Laeyendecker, O., Tucker, J. D., Eba, P., Novitsky, V., Vandamme, A.-M. , Seeley, J., Dallabetta, G., Harling, G., Grabowski, M. K., Godfrey-Faussett, P., Fraser, C.,… Pillay, D. (2018). Ethical considerations in global HIV phylogenetic research. The Lancet HIV, 5(11), e656-e666.
- Mehta, S. R., Schairer, C., & Little, S. (2019). Ethical issues in HIV phylogenetics and molecular epidemiology. Current Opinion in HIV and AIDS, 14(3), 221.
- Mutenherwa, F., Wassenaar, D., & de Oliveira, T. (2020). Adding a voice to the unique ethical considerations in molecular HIV surveillance. The American Journal of Bioethics, 20(10), 34-36.
- Molldrem, S., & Smith, A. K. (2020). Reassessing the ethics of molecular HIV surveillance in the era of cluster detection and response: Toward HIV data justice. The American Journal of Bioethics, 20(10), 10-23.
- Johnson, S., & Parker, M. (2020). Ethical challenges in pathogen sequencing: a systematic scoping review. Wellcome Open Research, 5(1), 1-7.
- Non, A. L., & Gravlee, C. C. (2015). Biology and culture beyond the genome: Race, racism, and health. American Anthropologist, 117(4), 737-738.
- Chowkwanyun, M., & Reed Jr., A. L. (2020). Racial health disparities and Covid-19—caution and context. New England Journal of Medicine, 383(3), 201-203.
- Guta, A., Gagnon, M., & Philbin, M. M. (2020). Ethical convergence and ethical possibilities: The implications of new materialism for understanding the molecular turn in HIV, the response to COVID-19, and the future of bioethics. The American Journal of Bioethics, 20(10), 26-29.
- Ralefala, D., Kasule, M., Wonkam, A., Matshaba, M., & de Vries, J. (2020). Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research? BMC Medical Ethics, 21(1), 1-11.
- Boyce, A. M., & Garibaldi, B. T. (2019). Genomics and high-consequence infectious diseases: A scoping review of emerging science and potential ethical issues. Health Security, 17(1), 62-68.
- Walker, A., Boyce, A., Duggal, P., Thio, C. L., & Geller, G. (2020). Genomics and infectious diseases: Expert perspectives on public health considerations regarding actionability and privacy. Ethics & Human Research, 42(3), 30-40.
- Juengst, E. T., & Van Rie, A. (2020). Transparency, trust, and community welfare: Towards a precision public health ethics framework for the genomics era. Genome Medicine, 12(1), 1-3.
About ELSIhub Collections
ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.