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Ethics and Data Sharing
Inception: April 2020
# of Members: 12+
Chair: Nicki Tiffin
South African National Bioinformatics Institute
UWC, South Africa
Vice-Chair: Anja Bedeker
South African National Bioinformatics Institute
UWC, South Africa
Contact: [email protected]
The PHA4GE Ethics and Data Sharing Working Group aims to encourage and support the collective effort of ethics and affiliated researchers in a global ethics community that can work collaboratively, in an inclusive and equitable way. This community can support and encourage ethical scientific research, genomic public health services and data sharing, using their combined knowledge and experience. By establishing and supporting development of this mature, global ethics community and their associated knowledge base, the activities of the working group will build capacity to address high priority ethical challenges. This virtual, interactive ethics community will provide an agile resource for addressing ongoing and future ethical challenges.
The Ethics and Data Sharing Platform was developed to encourage conversations and collaborations between ethicists and other researchers with an interest in research ethics and related topics.
The platform provides a forum for discussion; Q&A for sharing questions, solutions and guidance; collaborations and other activities, all aimed at together gaining insights and solutions into ethical and data governance issues in research. Through this forum the ethics, data governance and genomic epidemiology community will support new research, address current issues, and train the next generation of ethicists and researchers by actively supporting and including young researchers in platform activities.
The PHA4GE Ethics and Data Sharing Working group particularly hopes to foster a platform that can change and improve the current ethics and data governance research culture and support a vibrant, supportive and collegial community of researchers interested in ethics and governance. We aim to achieve this by providing a forum in which we can learn to work together honestly, respectfully and equitably, building trust, and developing a strong and positive collaborative community in ethics practice. The PHA4GE Ethics and Data Sharing Platform is intended to be a safe, respectful, collegial, inclusive and equitable space that advances ethics research and nurtures researchers from a wide variety of different professional backgrounds and career stages.
Institute of Human Virology
SIB Swiss Institute of Bioinformatics
Wellcome Connecting Science
SANBI
Yıldız Technical University
Institut Pasteur
Centre for Outbreak Preparedness, Duke-NUS Medical School
Africa Bioethics Network
Medical University of South Carolina
Nigerian Institute of Medical Research
SANBI
Centre for Genomic Pathogen Surveillance
Chan Zuckerberg initiative
Genomic Surveillance Unit, Wellcome Sanger Institute
Oracle Health
Sustainable Development, Research, and Innovation
Africa CDC
Utrecht University
Stellenbosch University
University of Cape Town
Wellcome Sanger Institute
Georgetown University School of Health and Law Center
Scotland's Rural College
University of Oslo
St George's, University of London
US FDA / GenomeTrakr
Afromed Academy of Medical Research and Innovation
Wellcome Sanger Institute
Amidst an atmosphere charged with anticipation and excitement, the first day of the PHA4GE Conference burst onto the scene, igniting minds and sparking conversations that promised to shape the future of pathogen genomics, globally.
The final day of the #PHA4GECon featured training initiatives to insightful Working Group breakout sessions.
The PHA4GE Ethics and Data Sharing Working Group has a mandate to improve the practical application of ethical principles to research and …