Genomic Uses in Infectious Diseases and Epidemics (GUIDE)
Rapid changes in genomic technologies are contributing to the development of more effective, personalized approaches to prevention and treatment of infectious diseases.
The GUIDE project, funded by an exploratory 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: genes have been shown to play a role in how likely an individual is to become infected with the active form of tuberculosis; particular gene variants have been associated with 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.
In addition to addressing these issues, the GUIDE project will inform the development of a full, multi-disciplinary Center (CEER) at Hopkins designed to identify and analyze these ELSI issues and make policy recommendations for how best to address them.
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