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Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework
Develops framework for ethical conduct in human-pathogen genomics research during pandemics and epidemics
In a public health emergency like a pandemic or epidemic, standard research behaviour and protocols must change. Research must be conducted at a faster pace. Data sharing needs to occur in real time, with easily accessible data. Accurate research results need to be made publicly available in a timely manner, to support data-driven decision-making when responding to a disease outbreak.
However, all of these changes significantly increase the likelihood of unethical practices. To address this, the GA4GH Regulatory & Ethics Work Stream (REWS), in collaboration with the Public Health Alliance for Genomic Epidemiology (PHA4GE) Ethics and Data Sharing Working Group, is designing an ethics framework for use during pandemics and epidemics. The Ethical Preparedness for Pandemics and Epidemics (EPPE) Framework will help ensure science can be conducted both quickly and ethically.
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Benefits
- Promotes ethical conduct and data sharing practices in human-pathogen genomics research during pandemics and epidemics
- Highlights mechanisms for human-pathogen genomics research benefit sharing during pandemics and epidemics
Target users
Researchers, clinicians, clinical laboratories, data generators, data custodians, data access committees, ethics review committees, data protection authorities, funding agencies, research participants & patient communities, security officers, and research institutes
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Product Lead
- Anja Bedeker
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There is a need for ethical preparedness during pandemics and epidemics. For example, at GA4GH Connect in April 2023, investigative journalist Emmanuel Freudenthal presented on the unethical handling of blood samples during and after the 2014 to 2016 Ebola outbreak in West Africa, which he compared to the recent COVID-19 pandemic response.
Standards development organisations, such as GA4GH and PHA4GE, can play a key role in ensuring ethical conduct for future pandemics and epidemics. Work in the GA4GH Infectious Disease Community led to the development of the EPPE group.
EPPE will be a practical tool — a framework — that researchers and scientists can use when conducting human-pathogen genomics research during pandemics and epidemics. The aim of the framework is to ensure that, despite research occurring at a faster pace, it is still conducted in an ethical and equitable manner.
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16 Nov 2023
Join four new GA4GH groups to help shape guidelines for pandemic prep, schema consensus, sequencing metadata, and categorical variants
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Don't see your name? Get in touch:
- Navneet Aujla
Mount Sinai Hospital - Shakuntala Baichoo
University of Mauritius - Anja Bedeker
South African National Bioinformatics Institute, Public Health Alliance for Genomic Epidemiology (PHA4GE) - Gemma Brown
Wellcome Sanger Institute (WSI) - Rebekah Butterfield
Oracle Corporation, University of West Florida - Aida Beatriz Falcon de Vargas
Hospital Vargas de Caracas - Sam Halabi
Georgetown University, O’Neill Institute for National & Global Health Law - Ashley Hobb
DNAstack - Liane Hughes
Science for Life Laboratory (SciLifeLab) - Jordan Lerner-Ellis
Mount Sinai Hospital - Radhika Mahajan
Mount Sinai Hospital - Dianne Nichol
University of Tasmania - Colman O'Cathail
EMBL's European Bioinformatics Institute (EBI) - Swayamsiddha Sahoo
Institute of Resource Development and Social Management - Owen Schaefer
National University of Singapore (NUS) - Donrich Thaldar
University of KwaZulu-Natal - Diya Uberoi
McGill University / Université McGill, Centre of Genomics and Policy
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