Ethical issues in genetics and infectious diseases research: An interdisciplinary expert review

• Published in: Ethics, medicine, and public health medicine, and public health, 2021-09, Vol.18, Article 100684
• Main Authors: Walker, Alexis, Bonham, Vence L., Boyce, Angie, Clayton, Ellen Wright, Garcia, Debra, Johnson, Stephanie, Laeyendecker, Oliver, Lewis, Michelle, Margolick, Joseph B., Mathews, Debra, Parker, Michael J., Spicer, Paul, Thio, Chloe L., Geller, Gail, Kahn, Jeffrey
• Format: Article
• Language: English
• Subjects: Genetics; Infectious diseases; Justice; Privacy; Resource allocation; Return of research results
• ISSN: 2352-5525; 2352-5525
• DOI: 10.1016/j.jemep.2021.100684

Research in genetics and infectious diseases (ID) presents novel configurations of ethical, legal, and social issues (ELSIs) related to the intersection of genetics with public health regulations and the control of transmissible diseases. Such research includes work both in pathogen genetics and on the ways that human genetics affect responses to ID. This paper identifies and systematizes the unique issues at this intersection, based on an interdisciplinary expert review. This paper presents results of a formal issue-spotting exercise among twenty experts in public health, law and genomics, biobanking, genetic epidemiology, ID medicine and public health, philosophy, ethics and ID, ethics and genomics, and law and ID. The focus of the exercise was on the collection, storage, and sharing of genetic information relating to ID. The issue-spotting exercise highlighted the following ELSIs: risks in reporting to government authorities, return of individual research results, and resource allocation – each taking on specific configurations based on the balance between public health and individual privacy/protection. The public health implications of interactions between genomics and ID frame considerations for equity and justice. In the context of the COVID-19 pandemic, these issues are especially pressing.