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Working Group

Ethics and Data Sharing​

Various regional and global ethics working groups have mandates to further the agenda of conducting ethical research. Often, these working groups fulfil a specific mandate or niche relating to their affiliated programme, and last only as long as the programme funding. In addition, ethics research culture – similar to research culture in general – is prone to silo’d and competitive research efforts which lack a common purpose and may have closed membership.

Data Governance

Ethics
Resources

Explore Ethical issues and solutions

Promote Ethics Research

Community
Collaboration

Training and Capacity Development

Overview

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]

Working Group Description

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.

Projects

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.

Members

Abbas Abel

Institute of Human Virology

Aitana Neves

SIB Swiss Institute of Bioinformatics

Alice Matimba

Wellcome Connecting Science

Anja Bedeker

SANBI

Büşra Betül Şimşek

Yıldız Technical University

Chiara Crestani

Institut Pasteur

Elyssa Liu

Centre for Outbreak Preparedness, Duke-NUS Medical School

Mercury Shitindo

Africa Bioethics Network

Michelle Nichols

Medical University of South Carolina

Ngozi Otuonye

Nigerian Institute of Medical Research

Nicki Tiffin

SANBI

Nicole Dagata

Centre for Genomic Pathogen Surveillance

Phoenix Logan

Chan Zuckerberg initiative

Rachel Ogidan

Genomic Surveillance Unit, Wellcome Sanger Institute

Rebekah Butterfield

Oracle Health

Rosa Lea Baldevarona

Sustainable Development, Research, and Innovation

Sarah Mwangi

Africa CDC

Soe Yu Naing

Utrecht University

Suereta Fortuin

Stellenbosch University

Vicky Nembaware

University of Cape Town

Victoria Simpson

Wellcome Sanger Institute

Sam Halabi

Georgetown University School of Health and Law Center

Nicola Holden

Scotland's Rural College

Pernille Nilsson

University of Oslo

Catrin Moore

St George's, University of London

Tina Pfefer

US FDA / GenomeTrakr

Clare Chukwudebelu

Afromed Academy of Medical Research and Innovation

Isla O'Connor

Wellcome Sanger Institute

Related Research

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 …