Alexis Walker1, Vence L Bonham2, Angie Boyce1, Ellen Wright Clayton3, Debra Garcia4, Stephanie Johnson5, Oliver Laeyendecker6,7, Michelle Lewis1, Joseph B Margolick8, Debra Mathews1,6, Michael J Parker5, Paul Spicer9, Chloe L Thio6, Gail Geller1,6, Jeffrey Kahn1,8. 1. Berman Institute of Bioethics, Johns Hopkins University, 1809 Ashland Avenue, Baltimore MD 21205 USA. 2. Social and Behavioral Research Branch, National Human Genome Research Institute, 31 Center Drive, Bethesda MD 20894 USA. 3. Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, 1211 Medical Center Drive, Nashville TN 37232 USA. 4. International Society for Biological and Environmental Repositories, 750 W Pender St #301, Vancouver BC V6C 1G8 Canada. 5. Wellcome Centre for Ethics and the Humanities and Ethox Centre, University of Oxford, Oxford OX1 2JD UK. 6. Johns Hopkins University School of Medicine, 733 N Broadway, Baltimore MD 21205 USA. 7. National Institute of Allergy and Infectious Diseases, National Institutes of Health, 5601 Fishers Ln, Bethesda, MD 20892 USA. 8. Johns Hopkins University Bloomberg School of Public Health, 615 N Wolfe St, Baltimore MD 21205 USA. 9. Department of Anthropology and the Center for Applied Social Research, University of Oklahoma, 455 W Lindsey St, Norman OK 73069 USA.
Abstract
PURPOSE: 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. BASIC PROCEDURES: 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. MAIN FINDINGS: 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. PRINCIPAL CONCLUSIONS: 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.
PURPOSE: 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. BASIC PROCEDURES: 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. MAIN FINDINGS: 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. PRINCIPAL CONCLUSIONS: 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.
Entities:
Keywords:
Genetics; Infectious diseases; Justice; Privacy; Resource allocation; Return of research results
Authors: David L Thomas; Chloe L Thio; Maureen P Martin; Ying Qi; Dongliang Ge; Colm O'Huigin; Judith Kidd; Kenneth Kidd; Salim I Khakoo; Graeme Alexander; James J Goedert; Gregory D Kirk; Sharyne M Donfield; Hugo R Rosen; Leslie H Tobler; Michael P Busch; John G McHutchison; David B Goldstein; Mary Carrington Journal: Nature Date: 2009-10-08 Impact factor: 49.962
Authors: Carolina Dos S Ribeiro; Martine Y van Roode; George B Haringhuizen; Marion P Koopmans; Eric Claassen; Linda H M van de Burgwal Journal: PLoS One Date: 2018-05-02 Impact factor: 3.240