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