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311804
Ethical, legal, social, and policy issues surrounding the application of genomics to infectious diseases and epidemics
Tuesday, November 18, 2014
: 5:00 PM - 5:15 PM
Gail Geller, ScD, MHS
,
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Theodore Bailey, MD, JD, MA
,
Johns Hopkins School of Medicine, Baltimore, MD
Priya Duggal, PhD
,
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Ruth A. Karron, MD
,
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Michelle Huckaby Lewis, MD, JD
,
Johns Hopkins Berman Institute of Bioethics, Baltimore, MD
Daniel Salmon, PhD
,
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Andrea Sutherland, MD, MSc, MPH
,
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Chloe L. Thio, MD
,
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Jeffrey Kahn, PhD, MPH
,
Johns Hopkins Berman Institute of Bioethics, Baltimore, MD
Background: Genomic information offers the opportunity for “personalized prevention” in both public health and clinical practice settings. To date, such efforts have focused primarily on chronic diseases and their behavioral risk factors. We received a NIH Exploratory Centers of Excellence in ELSI Research grant to study the ethical, legal, social, and policy (ELSI) implications of advances in genomics for infectious disease management. Methods: We created an infrastructure of multidisciplinary stakeholders to identify and address emerging issues in this novel terrain. Our team of experts in bioethics, health policy and law, genetic epidemiology, and vaccine safety has developed a matrix for identifying ELSI implications of using host genomic information in the prevention and treatment of two paradigmatic viral diseases: (a) pandemic influenza, representative of an acute infection, and (b) hepatitis C, a chronic infection. We are conducting semi-structured interviews with 15-20 experts in genetic epidemiology; infectious disease surveillance; vaccine development; and public health ethics, law and policy from diverse sectors—academia, government, industry, patient advocacy, etc.—to inform and validate our matrix. Interviews will be coded and analyzed in summer 2014. Results: We will present major themes and ELSI issues indentified during the interviews, along with ethical questions highlighted by our “issue-spotting” matrix. Examples of these questions are: (1) whether, in the case of a flu pandemic, health care workers might face work restrictions based on a genetic predisposition to be a “super-spreader”; and (2) whether future policy might mandate genetic susceptibility testing for individuals at high-risk of hepatitis C infection. Conclusions: Addressing such questions will inform the development of ethically-responsible recommendations regarding applications of genomics to the management of a broad range of infectious diseases that create significant public health burdens both domestically and internationally.
Learning Areas:
Ethics, professional and legal requirements
Public health or related public policy
Learning Objectives:
Discuss emerging ethical, legal, social, and policy implications of genomic applications in infectious diseases and epidemics.
Describe a novel approach for identifying and mapping ethical, legal, social, and policy issues at the intersection of genomics and public health.
Keyword(s): Genetics, Ethics
Presenting author's disclosure statement:Qualified on the content I am responsible for because: I am project coordinator and an investigator on the current Exploratory Centers of Excellence in ELSI Research grant, and have conducted research as part of the JHU Berman Institute of Bioethics Genetics and Public Policy Center for 3 years.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.
