Genomics and Infectious Diseases: Expert Perspectives on Public Health Considerations regarding Actionability and Privacy. Issue 3 (18th May 2020)

• Record Type: Journal Article
• Authors: Walker, Alexis; Boyce, Angie; Duggal, Priya; Thio, Chloe L.; Geller, Gail
• Is Part Of: Ethics & human research. Volume 42:Issue 3(2020)
• Page Start: 30
• Page End: 40
• Publication Date: 2020-05-18
• Subjects: human research ethics -- genomic research -- infectious diseases -- Certificate of Confidentiality -- return of results -- genetic privacy; Medical ethics -- United States -- Periodicals; Human experimentation in medicine -- Periodicals; Informed consent (Medical law) -- United States -- Periodicals; 174.2805
• DOI: 10.1002/eahr.500051
• Languages: English
• ISSNs: 2578-2355

Abstract

ABSTRACT: There is growing evidence that human genetics plays a significant role in shaping human responses to infectious diseases. For instance, individuals' genetic susceptibility or resistance to infectious disease is likely to affect disease transmission. Yet little attention has been paid to the ethical, legal, and social implications of research in genomics and infectious disease, despite the unique ethical issues that arise in this arena. This article presents results from a pilot study exploring ethics in research on human genetics and response to HIV and other infectious diseases and is focused on perspectives from expert stakeholders. Whereas chairs of institutional review boards, biobank directors, and researchers in genomics and infectious disease expressed similar views about research privacy in the context of a public health emergency, they expressed different perspectives about the role that public health considerations ought to play in the return of individual results to research participants. These perspectives highlight the need to emphasize the importance of broad dialogue for helping various parties navigate the ethically complex current and future challenges of genomics and infectious disease research.