GLOBAL CITIZENS' ASSEMBLY
ON GENOME EDITING
Project Management Team
John Dryzek, Simon Niemeyer and Nicole Curato from the Centre for Deliberative Democracy and Global Governance at the University of Canberra, Dianne Nicol from the Centre for Law and Genetics at the University of Tasmania and Sonya Pemberton from Genepool Productions in Melbourne, Australia and Antoine Vergne from Missions Publiques have an ambitious plan to convene the world’s first Global Citizens’ Assembly on genome editing. The proposed assembly is intended to provide concrete response to the urgent ethical and regulatory questions in relation to genome editing technologies. The Global Citizens’ Assembly will bring together around one hundred participants representing different countries across all continents. Participants will take part in five days of deliberations about the global principles of governance of genome editing. They will have access to eminent scientists at the forefront of genomic research, ethicists, and other stakeholders. They will have the ear of decision-makers at national and global levels. Central to the design of the Global Citizens’ Assembly is its ambition to provoke a global conversation about genome editing. The Global Citizens’ Assembly will be featured in a three-part science documentary series about how citizens of the world might weigh in on one of the most consequential and complicated issues of scientific ethics.
Project Leader, University of Canberra
Simon Niemeyer
Simon Niemeyer is the Associate Dean for Research at the Faculty of Business, Government and Law at the University of Canberra. He has designed, implemented and assessed over twenty deliberative forums in the past ten years on a range of
topics—from biobanking in British Columbia to climate change in the Australian Capital Territory to begging in Uppsala. His work has been published in top academic journals including The American Political Science Review, American Journal of Political Science, Science, Science and Nature.
As Project Leader, Simon is in-charge of the overall coordination of the global research and partner networks. He is also leading the design, implementation, and assessment of the Global Citizens’ Jury.
Project Leader, University of Canberra
John S. Dryzek
John S. Dryzek is the founder of the Centre for Deliberative Democracy and Global Governance. He holds the prestigious Australian Research Council Laureate Fellowship for his work on environmental politics, global justice, and cultural variety
Jin deliberative practice. He is the author of more than fifteen books on deliberative democracy and environmental politics and a fellow at the Academy of Sciences in Australia. Before moving to the University of Canberra, he was the head of the Department of Political Science at the University of Oregon, University of Melbourne and the Social and Political Theory Program at the Australian National University.
As one of the original proponents of a Global Citizens’ Assembly, John is leading the conceptualisation of the Global Citizens’ Assembly’s design and assessment.
Project Leader, University of Canberra
Nicole Curato
Nicole Curato is the author of the books Democracy in a Time of Misery: From Spectacular Tragedy to Deliberative Action (2019, Oxford University Press) and Power in Deliberative Democracy: Norms, Forums, Systems (2018, Palgrave). She is an Associate
Professor at the Centre for Deliberative Democracy and Global Governance and the editor of the Journal of Deliberative Democracy.
Nicole is best known for her work on the everyday politics of deliberative democracy in the aftermath of crisis, disasters, and trauma. Aside from her academic work, Nicole conceptualises and hosts a television programme for CNN Philippines and has written for international publications including The New York Times and Al Jazeera.
In this project, Nicole is leading the research on ‘technologies of transmission’ or the role of documentary filmmaking in forging a global conversation about future technologies.
Collaborator, University of Tasmania
Dianne Nicol
Dianne Nicol is the Director of the Centre for Law and Genetics at the University of Tasmania. She is leading two Australian Research Council-funded projects which examine the legal, research and social issues associated with genomic data
sharing and the regulation of innovative health technologies including somatic cell genome editing. Dianne’s expertise offers a unique combination of her PhD research in the field of biology and her legal specialisation on patenting of biotechnology inventions. She is a member of the Australian Academy of Law and holds the title of Distinguished Professor.
Dianne’s primary roles in the project involve framing the citizen deliberations with the broader ethical, legal, and social context of genome editing globally, and articulating the outcomes of the deliberations in various forums.
Collaborator, Genepool Productions
Sonya Pemberton
Sonya Pemberton is one of Australia’s leading factual television producers specialising in science. 2012 Emmy Award-winner and record-breaking five-time winner of the prestigious Eureka Award for Science Journalism, her passion is quality
science programming. Sonya has written, directed and produced over 60 hours of broadcast documentary, her films winning over 70 international awards. She also executive-produced many award-winning factual series and one-off programs, including the 2015 global science-history series Uranium: Twisting The Dragon’s Tail for SBS, PBS and ZDF/ARTE.
As a writer and director, her films include the critically acclaimed and multi-award-winning documentaries, Jabbed: Love, Fear and Vaccines, Vaccines:Calling the Shots, Catching Cancer, and Immortal which featured the work of Nobel Laureate Elizabeth Blackburn, won the 2012 Emmy award for Outstanding Science programming.
Collaborator, Missions Publiques
Antoine Vergne
Antoine Vergne is the Director of the Berlin Office at Missions Publiques. He specialises designing, implementing, and evaluating processes of citizen participation that can scale at the global level while keeping a high level of quality.
He has experience coordinating high profile international projects, including the World Wide Views on Biodiversity (2012) and Climate and Energy (2015), the Global Citizens’ Dialogue on the Future of the Internet and the International Citizens’ Dialogue on Autonomous Mobility. Antoine holds a PhD in Political Science from Freie Universität Berlin and Institut d’ études politiques de Paris.
Antoine is collaborating with the Centre for Deliberative Democracy and Global Governance in this project, as part of Missions Publique’s thrust of developing new modes of decision-making that responds to the demands of governance in the twenty-first century.
Project Manager, University of Canberra
Josephine Wright
Josephine Wright is an award-winning documentary filmmaker with extensive experience as a producer across many genres including science, wildlife, history and contemporary factual programs.
Jo has coordinated projects in difficult environments from Svalbard to Chernobyl to outback Australia. She has delivered projects to Broadcasters around the world, from ABC Australia to BBC UK to RTBF in Belgium.
As project manager for the Global Citizens’ Assembly, Jo is leading the coordination of global partners in terms of project schedules, deliverables, and communication.
Collaborator, Missions Publiques
Chi Huy Tran-Karcher
Chi Huy Tran-Karcher, M.A., is Head of Strategic Partnerships at Missions Publiques. He is engaged in various projects, including a stakeholder dialogue for the UN High Level Panel on Digital Cooperation, building a network of citizens´
assemblies on climate in Europe, and EU Horizon 2020 research projects. Prior to joining Missions Publiques, he served as Head of Climate in the European Climate Foundation, where he managed high-level multi-stakeholder dialogues, commissioned comprehensive research studies and engaged in advocacy. He also has extensive experience in the financial sector and international cooperation.
In the Genome Editing Project, Huy is focusing on building a strategic network of global partners and elevating the political impact at international level.
Global Partners
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Australia
Collaborator, Deakin University
Baogang He
Professor Baogang He is Alfred Deakin Professor and Chair in International Relations since 2005, at Deakin University, Australia. Graduated with PhD in Political Science from Australian National University in 1994, Professor He has become widely
known for his work in Chinese democratization and politics, in particular the deliberative politics in China.
Professor He has published 7 single-authored books, 63 international refereed journal articles resulting in total Google citation count of 3075 (as of 20 Nov 2016) and Hirsch index of 27. His publications are found in top journals including British Journal of Political Science, Journal of Peace Research, Political Theory, and Perspectives on Politics. In addition, he published 3 books, 15 book chapters and 63 journal papers in Chinese.
Professor He has also held several honorary appointments and research fellowships at renowned universities including Stanford University, University of Cambridge, Columbia University, Leiden and Sussex University.
Creative Director, December Media
Tony Wright
Tony Wright is the founder of December Media. He is also an award-winning and highly experienced producer and executive producer of documentary, drama and children’s television. His numerous credits include the acclaimed docudrama Captain
Cook: Obsession and Discovery, hit children’s series Li’l Horrors and Emmy Award winning science documentary Immortal.
Tony produced the BAFTA nominated UK coproduction Mrs Biggs and executive produced five seasons of the top rating The Doctor Blake Mysteries, and the sequel The Blake Mysteries as well as the Australian produced 3D IMAX films Hidden Universe, The Search for Life in Space, The Story of Earth, and Great Barrier Reef. Tony is very proud of December’s most recent production The Cry.
Tony has come onboard as the co-Executive Producer of the documentary series that is part of the Global Citizens' Assembly on Genome Editing.
Belgium
Collaborator, KU Leuven
Ine Van Hoyweghen
Ine Van Hoyweghen is Research Professor at KU Leuven (Belgium), where she directs the Life Sciences & Society Lab. She is leading various Flemish Research Council and EU-funded projects which examine the legal, ethical and social issues associated
with genomic medicine and the governance of innovative health technologies. She is a recognized expert in the field of Responsible Research and Innovation (RRI), working on the science-society nexus (e.g., citizen science, citizen panels), especially regarding the responsible translation of new technologies in genomics from the lab to society.
Ine is Alumnus Member of the Young Academy of the Royal Flemish Academy of Belgium for Science and the Arts (KVAB), Member of the Belgian Consultative Committee on Bioethics (2019-2023), and founding Chair of the Belgian Science, Technology & Society Network.
Collaborator, KU Leuven
Andrea Felicetti
Andrea is a Postdoctoral Researcher at the Center for Political Research, KU Leuven. He previously held research positions at the Scuola Normale Superiore (Center on Social Movement Studies), European University Institute, University of Lille 3,
University of Louvain (Hoover Chair of Economic and Social Ethics) and University of Canberra (Center for Deliberative Democracy and Global Governance). He obtained his PhD (2014) from the School of Politics and International Relations at the Australian National University.
Previously, Andrea held visiting positions at University of Bologna, Warwick University and University of Washington. He works on democracy and governance innovation, public sphere and social movements. He is the author of Deliberative Democracy and Social Movements (Rowman and Littlefield International) and his work is published in several international journals including Science, European Journal of Political Research, Social Movement Studies, Journal of Business Ethics.
Brazil
Collaborator, Federal University of Minas Gerais
Ricardo Fabrino
Ricardo Fabrino Mendonça is an Associate Professor in the Department of Political Science, Federal University of Minas Gerais, Brazil, and a Fulbright Visiting Scholar at the Center for the Study of Democracy,
University of California Irvine, USA. He is a researcher at MARGEM – Research Group on Democracy and Justice, holding a CNPq and a Fapemig fellowships. He is also the director of international cooperation of the Brazilian Political Science Association (ABCP) and of the Brazilian National Institute for Digital Democracy (INCT.DD).
Professor Mendonça studies democratic theory, contentious politics and political communication. He has recently published in Representation, Policy Studies, Constellations, Political Studies, Critical Policy Studies, Policy & Society, Brazilian Political Science Review and Democratic Theory. He is one of the editors of: Deliberative Systems in Theory and Practice (with S. Ercan and S. Elstub, Routledge, 2018); Introdução à Teoria Democrática (with E. Cunha, Editora UFMG, 2018); and Deliberação online no Brasil (with R. Sampaio and S. Barros).
Collaborator, KU Leuven
Hilde Van Esch, MD, PhD
Hilde Van Esch is a paediatrician and clinical geneticist from training and staff member at the Centre for Human Genetics at the University Hospitals UZ Leuven, where she covers a broad field of medical genetics, with specific interest in
intellectual disability, neurology and syndromology As Assistant Professor at KU Leuven, she heads the Laboratory for the Genetics of Cognition.
Hilde's research is focussed on neurodevelopmental disorders and congenital brain malformations, for which she has implemented the induced stem cell and CrispR-Cas technologies in the lab. She is board member of the Department of Human Genetics KU Leuven, and elected board member of the European Society for Human Genetics. She is equally member of the Leuven Institute for Genome and Society (LIGAS) and scientific counsellor in several rare disease and family associations.
Berlin
Collaborator, ifok
Jacob Birkenhäger
Jacob Birkenhäger has been managing dialogue processes in the area of social and economic policy at ifok since 2015. He deals with political and social forms of governance and open government approaches, including those in the context
of the Bürgerrat Demokratie [German Citizens’ Assembly on Democracy], a process assessing the current state of German democracy and recommending ways to increase democratic participation, the Dialogue Forum on Free Trade which included citizens in the discussion around the drafting of the TTIP agreement and the Fair Energy Transition for All project, which enables marginalized communities to be part of the discussion on energy transition, ensuring that no one is left behind. He has experience ranging from development policy and globalisation to democracy, societal cohesion and social market economy, as well as issues of climate change, mobility and infrastructure.
Jacob studied political science, philosophy and public law in Mainz, specialising in the analysis and comparison of political systems and in civic engagement and participation.
Denmark
Collaborator, Danish Board of Technology
Bjørn Bedsted
Bjørn Bedsted (MA in Social Anthropology) is deputy director at the Danish Board of Technology. Bjørn is highly experienced in methods for participatory technology assessment and public participation. His areas of expertise cover environmental
governance, sustainable development, responsible research and innovation and policy analysis. Bjørn has coordinated different citizen participation projects on gene editing, making use of well-established mini-public methods (consensus conference and citizens jury).
As global coordinator of the World Wide Views initiative and projects (WWViews on Global Warming 2009; WWViews on Biodiversity 2012; WWViews on Climate and Energy 2015) he also has extensive experience with the organisation of global citizen participation projects. His role and interest in the project are primarily to support the introduction of a new methodology for citizen participation in global governance.
France
Collaborator, Université de Paris II
Jennifer Merchant
Jennifer Merchant obtained her PhD in political sciences from Sciences po Paris, and now teaches at the Université de Paris II. Her research privileges a pluridisciplinary approach at the crossroads of political science, law, gender studies and bioethics in Anglo-American and European countries.
She is currently working on two projects: 1° analyzing from a comparative perspective (France/United States) policies relative to gender and health care and research, and 2° comparative public policy analyses of the framing of human genome editing (HGE) and their impact on the future of human reproduction. She is a member of the Inserm Ethics Committee and of the Institut universitaire de France, and was a member of the U.S. National Academy of Sciences Committee on Human Genome Editing.
Among her publications; Procréation et politique aux Etats-Unis, 1965-2005 (Paris, Belin 2006), “Assisted Reproductive Technology in the United States: Towards a National Regulatory Framework”, IJB 2009 , Access to Assisted Reproductive Technologies: The Case of France and Belgium (dir.), Berghahn forthcoming December 2019 and Les fondements juridiques des droits des femmes aux États-Unis (The Juridical Foundations of Women’s Rights in the United States), ENS Editions forthcoming 2020.
Collaborator, Neuroscience Paris Seine
Hervé Chneiweiss
Hervé Chneiweiss is a neurologist and neuroscientist, MD-PhD, Research Director at the CNRS. He is currently head of the research centre Neuroscience Paris Seine (CNRS /Inserm/Sorbonne University) and Glial Plasticity team.
Trained as a neurologist (gait and movement disorders, Parkinson), he then investigated neurogenetics of human diseases (cerebellar ataxias). His scientific work in fundamental research was mainly dedicated to the biology of astrocytes and in the recent period their roles in brain tumour origin, progression and plasticity, identifying new therapeutic avenues. He has authored more than 150 academic papers.
He is also involved in bioethics, presently chair Inserm Ethics Committee (IEC) and UNESCO International Bioethics Committee, former member French National Advisory Ethics Committee (CCNE, 2013-2017). He wrote several books or chapters on bioethics of human embryos, stem cells, genetics and neuroscience. On the basis of an opinion of the IEC in 2015 on genome editing he was an active promoter of a european initiative “Fostering Responsible Research with Genome Editing Technologies” that resulted in the international association ARRIGE (Association for Responsible Research and Innovation in Genome Editing. Vice-President: https://arrige.org/). He is member WHO advisory committee on developing global standards for governance and oversight of human genome editing.
Spain
Collaborator, Deliberativa
Yago Bermejo Abati
Yago Bermejo Abati is co-founder of deliberativa.org and member of Democracy R&D and OECD Innovative Citizen Participation Networks.
From 2016 to 2019 Yago has been working as the head of the Collective Intelligence for Democracy Lab and coordinator of the project connecting Medialab-Prado with the Open Government, Participation and Transparency Area in Madrid City. During that period he has been involved in the design and delivery of the G1000 Madrid and the Observatorio de la Ciudad.
Yago's work with deliberativa is centered in disseminating and implementing deliberative democracy in the context of Spain. From last year he has been also designing new global deliberation projects such as the World Citizen Assembly on Agenda and the Global Assembly on Climate.
United Kingdom
Collaborator, Keele University
Marit Hammond
Marit Hammond is Lecturer in Environmental Politics at Keele University, and Co-Investigator of the ESRC Centre for the Understanding of Sustainable Prosperity (CUSP). Specialising in political theory, her expertise spans deliberative
democracy, critical theory, and environmental governance.
Recent work includes the book Power in Deliberative Democracy: Norms, Forums, Systems (Palgrave, 2018), co-authored with Nicole Curato and John Min, as well as numerous articles in journals such as Environmental Politics, Contemporary Political Theory, Policy Sciences, Critical Review of International Social and Political Philosophy, and Democratization.
Collaborator, Wellcome Genome Campus
Anna Middleton
Anna is Head of Society and Ethics Research, Connecting Science at the Wellcome Genome Campus (which also hosts the Wellcome Sanger Institute). She is also Professor/Affiliate Lecturer at the Faculty of Education, University of
Cambridge (see Wikipedia profile). As both a qualified genetic counsellor and academic psychologist she brings experience of the clinical application of genetic counselling as well as the social science research that underpins this. She has a history of delivering large scale academic research about the societal impact of genomics on different public audiences and leads the global Your DNA Your Say project involving 37,000 publics from 22 countries in 15 languages with gathers attitudes towards genomic data sharing - outcomes from which will be used in policy from the Global Alliance for Genomics and Health. She is also involved in writing policy, e.g. as the British author on the American Society of Human Genetics policy on human germline editing and as Chair of the Association of Genetic Nurses and Counsellors.
Anna’s work utilises skills from the film and creative industries to translate complex genomics into lay language so that people can participate in her research. She leads a team that includes social scientists, genetic counsellors and within her team there is also expertise in film production.
Collaborator, Involve
Simon Burall
Simon Burall is a Senior Associate of Involve. He has long and extensive experience in the fields of democratic reform, open government, public participation, stakeholder engagement, accountability and transparency, scientific
technology innovation and organisational change. He has worked at the local and national level in Africa, Asia and Europe as well as on related issues of global governance and democracy.
His current role will see him leading an expansion of Involve’s work on science and technology. This Citizens and Science programme will focus on developing more effective ways for citizens to be involved in the development and application of new technological innovations with a particular focus on data and artificial intelligence.
In his role with Involve, Simon has worked with and advised many organisations including Number 10, the Cabinet Office, the Scottish Government, the Department for Business Innovation and Skills, the Department for Communities and Local Government, the Department of Health, the Department for Energy and Climate Change, NHS England, the UK Civil Society Network on Open Government, UNDP, OECD, the World Bank, the European Economic and Social Council, as well as at local level with numerous local authorities and other public bodies.
United States
Collaborator, Consortium for Science, Policy and Outcomes
Mahmud Farooque
Mahmud’s work at ASU’s Washington Center focuses on linking science policy to better societal outcomes. He co-leads CSPO’s long-term efforts to build a community of practice among innovative
R&D program managers in the government, non-government and private sectors.These include convening informal and formal knowledge exchanges between program managers about the challenges and opportunities for innovating in path dependent institutions.
Mahmud is the principal coordinator of Expert and Citizen Assessment of Science and Technology (ECAST) – a distributive institutional network that brings together research centers, informal science education centers, citizen science programs and non-partisan policy think tanks to engage citizens on decision-making related to science and technology policy. He led large-scale public consultation projects on biodiversity, space, climate, and energy to support policy and decision-making at the national and global levels. His current public consultation projects involve Climate Change Resilience, Gene Drives, Driverless Cars, Geoengineering, and Gene Editing.
Mahmud’s expertise focuses on innovation systems, research management, knowledge co-production, policy entrepreneurship, and participatory technology assessment.
We’re looking for regional partners, volunteers, and philanthropic organisations to support this ground-breaking project.
We have reached a singular global moment. We can now edit genes with unprecedented ease and precision. How do we apply this technology? What sort of future do we want? And who gets to decide?