Beyond Boundaries: ELSI and the Complex Relationships between Infectious and Genetic Diseases

NIH RePORTER · NIH · RM1 · $547,847 · view on reporter.nih.gov ↗

Abstract

This supplement application is requesting to extend the project period by 12 months to allow for the productive closeout of the Johns Hopkins University Center of Excellence in ELSI Research, Bridging Infectious Diseases, Genomics & Society (BRIDGES). Project Summary Considerable attention needs to be paid to the ethical, legal, social implications (ELSI)—for individuals, groups or the larger society—of using genomic information in the management of infectious disease. Our CEER (Bridging Infectious Disease, Genomics & Society – BRIDGES1) was designed to examine the ethical, legal, social, historical and policy issues confronting the incorporation of genomics in the prevention, outbreak control, and treatment of a range of infectious diseases. Our transdisciplinary research plan was organized around three discrete but related program areas, each of which included one pilot project. In Program Area 1 (Implications for Research), the pilot project addressed the impact of research on genetic variation in HIV and HCV transmission in cohorts of at-risk urban populations. In Program Area 2, (Implications for Public Health Policy), the pilot project analyzed the role and impact of advances in “vaccinomics” for informing population-based prevention. In Program Area 3 (Implications for Clinical Practice), the pilot project assessed the application of genomics in the clinical management of acute, high consequence infectious diseases. We also included a robust career development plan. Our research and education plans were designed to inform and influence the future research agenda—even as the science is still developing—so that the benefits of genomic applications to infectious disease are maximized while potential harms to individuals and populations are minimized. One of the observations emerging from our pilot work is that there are a growing number of examples of “genetic diseases” with an infectious component, and of “infectious diseases” with a genetic component. Increasingly, genomics informs how we think about infections, and microbes/pathogens influence the phenotypic expression of genetic variation. At the same time that our understanding of the science is evolving, advances in data sciences, molecular epidemiology and gene editing technologies, and more importantly their uses together, require a reassessment of categories of technologies and how the technologies are regulated and used. These shifting boundaries - between infectious disease and genetic disease, and between uses of emerging technologies - are creating an important and, as yet, understudied area of inquiry. In this administrative supplement, we propose to close out the work undertaken during BRIDGES1, leverage the infrastructure and relationships built in BRIDGES1 to address the current pandemic, and generate research ideas for future grant proposals that will ensure the sustainability of the work we began under BRIDGES1. To ensure the sustainability of the work undertaken as part of...

Key facts

NIH application ID
10134594
Project number
3RM1HG009038-04S1
Recipient
JOHNS HOPKINS UNIVERSITY
Principal Investigator
GAIL GELLER
Activity code
RM1
Funding institute
NIH
Fiscal year
2020
Award amount
$547,847
Award type
3
Project period
2016-05-16 → 2022-06-30