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Rapid changes in genomic technologies are contributing to the development of more effective, personalized approaches to prevention and treatment of infectious diseases.
The Center for Bridging Infectious Disease, Genomics, and Society (BRIDGES), funded by a Center of Excellence in ELSI Research (CEER) grant from the National Human Genome Research Institute (NHGRI), is designed to ensure that ethical, legal and social implications (ELSIs) of these advances are understood and taken into account in clinical and public health decision making for infectious disease management.
Applications of “personalized prevention” have focused primarily on chronic diseases such as cancer, heart disease and diabetes, and their behavioral risk factors including diet and smoking.
Infectious diseases, on the other hand, account for a significant component of disease burden worldwide, and are responsible for a large proportion of morbidity and mortality across all aspects of society. The prevention and control of infectious diseases and epidemics for both individuals and populations challenge medicine, public health, and domestic and international policy.
Applications of genomic technologies are providing insights into the evolution and spread of infectious diseases as well as differences in people’s susceptibility to and severity of infection and in their immune responses to prevention (vaccines) and drug therapies.
For example: there are genes that play a role in how likely an individual is to become infected with diseases including HIV, active tuberculosis, and chronic hepatitis C; particular gene variants are associated with the risk of becoming more severely ill from influenza infection; and people with certain forms of a gene (or genes) are less likely to be protected by the hepatitis B vaccine.
With the potential for tailored interventions for particular individuals, populations or subpopulations, the use of such genetic information for decision making in a clinical or public health setting might bring about new ELSI considerations.
A number of factors will contribute to the types of issues that arise, including characteristics of the disease in question (for example, how it is transmitted, whether it is acute or chronic, and whether it is vaccine-preventable or treatable), environmental/political/geographic challenges such as pandemic situations or resource scarcity, existing laws and policies, public attitudes, and cultural differences.
Ethical, legal, and societal issues that arise might include balancing health-related benefits and harms between individuals and the larger community, minimizing threats to individual privacy and autonomy, and ensuring just distribution of scarce resources. It will be important to have a way to identify, analyze and address the issues that accounts for the many contributing factors and challenges.
Gail Geller, ScD, MHS, Co-Principal Investigator, Johns Hopkins Berman Institute of Bioethics
Jeffrey Kahn, PhD, MPH, Co-Principal Investigator, Johns Hopkins Berman Institute of Bioethics
Angie Boyce, PhD, Project Director, Johns Hopkins Berman Institute of Bioethics
Rachel Dvoskin, PhD, Project Manager, Johns Hopkins Berman Institute of Bioethics
Janesse Brewer, MPA, Johns Hopkins Bloomberg School of Public Health
Priya Duggal, PhD, Genetic Epidemiology, Johns Hopkins Bloomberg School of Public Health
Brian Garibaldi, MD, Pulmonary and Critical Care Medicine, Johns Hopkins Medicine
Lisa Maragakis, MD, MPH, Infection Prevention, Johns Hopkins Medicine
Daniel Salmon, PhD, Institute for Vaccine Safety, Johns Hopkins Bloomberg School of Public Health
Chloe Thio, MD, Johns Hopkins Medicine
Nathaniel Comfort, PhD, Institute of the History of Medicine, Johns Hopkins University
Jason Farley, PhD, MPH, ANP-BC, AACRN, FAAN, Johns Hopkins School of Nursing
Leslie Meltzer Henry, JD, PhD, MSc, University of Maryland Francis King Carey School of Law & Johns Hopkins Berman Institute of Bioethics
Ruth Karron, MD, Department of International Health, Johns Hopkins Bloomberg School of Public Health
Oliver Laeyendecker, PhD, MS, MBA, Johns Hopkins Bloomberg School of Public Health & NIAID
Carl Latkin, PhD, Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health
Michelle Lewis, MD, JD, Johns Hopkins Berman Institute of Bioethics
Debra Mathews, PhD, MA, Johns Hopkins Berman Institute of Bioethics
Graham Mooney, PhD, Institute of the History of Medicine, Johns Hopkins University
Theodore Bailey, MD, JD, MA, Infectious Disease Consultants of Lancaster
- To explore and analyze the ethical, legal, social and policy significance for P5 medicine of communicable disease transmission, and variation in the modes and patterns of transmission among diverse communities and populations, and to consider the role of P5 medicine in reducing disparities in infectious disease burden.
- To evaluate the ethical, legal and social tensions that arise with the application of Precision Medicine to infectious disease management at the level of individuals, communities and populations, and to inform policies that protect individuals and vulnerable populations while promoting the common good.
- To anticipate, evaluate and develop policy responses to ELSI issues as genomic technologies and information are applied to infectious disease prevention, outbreak control, and clinical care.
There are three distinct yet related research programs that fall under the Center-wide aims:
- Research Program 1: Implications for the Research Enterprise
Pilot Project: Genetic Variation, Research Cohorts and Vulnerable Populations at risk of HIV and HCV Infection.
Project Leaders: Priya Duggal, Chloe Thio
- Research Program 2: Implications for Public Health Policy
Pilot Project: Pandemic Prevention and Vaccinomics.
Project Leaders: Daniel Salmon, Janesse Brewer
- Research Program 3: Implications for Clinical Practice
Pilot Project: Application of Genomics to Clinical Management of High-consequence Infections.
Project Leaders: Lisa Maragakis, Brian Garibaldi
- Research Program 1: Implications for the Research Enterprise
Education and Career Development
By developing multiple education and career development opportunities, BRIDGES aims to identify, educate, and launch the next generation of scholars with particular interests in the ethical, legal, social and policy implications of genomics and infectious disease prevention, control and treatment. Some of our education and career development activities include:
- A new course offered in Spring 2017, Germs, Genes, Patients, Populations, that examines past, present and future ELSI issues at the intersection of infectious disease and genomics. The course challenges individualistic assumptions in bioethical models with frameworks that consider the interactions between hosts, vectors, pathogens, and environments. How are individualistic conceptions of autonomy, privacy and liberty being challenged in an “omic” era of microbial multiplicity?
- A post-doctoral fellow, starting in Fall 2017, co-sponsored by the Berman Institute of Bioethics’ Hecht-Levi post-doctoral fellowship program and the JHU Department of the History of Medicine. The fellow’s scholarship will bring historical perspectives to bear on contemporary ethical and legal challenges in genomics and infectious diseases.
- Partial tuition support for one jointly-enrolled Master of Bioethics Program student working in this subject area, beginning in Fall 2017.
- Mentorship from CEER co-investigators available to students pursuing theses, capstone projects, and other research on CEER-relevant topics. Programs may include but are not limited to the Genetic Counseling Training Program, the General Preventive Medicine Residency, masters and doctoral training in genetic epidemiology and infectious disease epidemiology, and preclinical students in the School of Medicine.
In the future, we plan to create a research education program for students from underrepresented groups; organize an ELSI Research Day to highlight ELSI research being undertaken at JHU and to foster new collaborations; develop a new genomics/infectious disease ELSI concentration for MBE and MPH students; and offer the 8-week course as a BI intensive.
- NIH funds new studies on ethical, legal and social impact of genomic information, National Institutes of Health
- NIH Names Johns Hopkins Berman Institute a Center of Excellence for Bioethics Research on Genomics and Infectious Disease
- Press Release: Personal Genome, Public Health: Johns Hopkins Establishes a Center to Study the Ethical Issues of Applying Genomics to Infectious Disease Treatment and Prevention
- Gail Geller, Rachel Dvoskin, Chloe L Thio, Priya Duggal, Michelle H Lewis,Theodore C Bailey, Andrea Sutherland, Daniel A Salmon and Jeffrey P Kahn. Genomics and infectious disease: a call to identify the ethical, legal and social implications for public health and clinical practice. Genome Medicine 2014, 6:106 doi:10.1186/s13073-014-0106-2. This article is part of the series Genomics of infectious diseases special issue.
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- Johns Hopkins Medicine Biocontainment Unit (BCU)
- International Vaccine Access Center (IVAC)
- Center for Immunization Research (CIR)
- Institute for Vaccine Safety
- Institute for the History of Medicine
This project is funded by grant: 1RM1HG009038-01