Genomics and Infectious Diseases: Expert Perspectives on Public Health Considerations regarding Actionability and Privacy
| Autor: | Chloe L. Thio, Gail Geller, Alexis Walker, Angie Boyce, Priya Duggal |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
medicine.medical_specialty
Health (social science) education Pilot Projects Genomics infectious diseases Communicable Diseases Article Health(social science) Cohort Studies genomic research Certificate of Confidentiality Stakeholder Participation medicine Humans human research ethics genetic privacy Research ethics Research Public health Articles Middle Aged Biobank Human genetics return of results Privacy Infectious disease (medical specialty) Engineering ethics Public Health Return of results Psychology Disease transmission Ethics Committees Research |
| Zdroj: | Ethics & Human Research |
| ISSN: | 2578-2363 2578-2355 |
| DOI: | 10.1002/eahr.500051 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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