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IDPC Members

Chair

 

Francis CRAWLEY

Good Clinical Practice Alliance
Leuven, Belgium

Francis took over as IDPC chair in August 2022. A philosopher specialized in research ethics, integrity & methodology as well as in data/AI ethics & law. Expertise in EU, US, international and country-specific ethics, law, and patient and community interests in health-related research. Strong experience working closely with patients, communities, researchers, and policymakers across disciplines. domains, and geographic regions in establishing consortia, developing patient registries, contributing to the development of biobanks, drafting data management and data protection plans, and contributing to building data repositories. A strong background in the methodologies for designing and reviewing health-related research supported by effective communication and leadership skills as well as diplomacy with the ability to influence changes in bioethics and law. Additional strong background in the development of research, guidance, and ethics related to global diseases affecting resource-poor settings and orphan diseases in the context of leading and/or contributing to challenging projects. Wide experience (e.g., UNAIDS, WHO, UNESCO, European Commission, Council of Europe, and others, including local organizations and industry) in developing health-related research projects, collaborative engagements, regulatory and policy outreach, and education and training in Europe, Africa, Asia, the Americas, and Eastern Europe & Central Asia. Leading roles in the development of international and national guidelines, capacity-building, empowerment, and education programmes for health research; including GCP, ethics review systems, and data privacy & management (a GDPR DPO), with expertise in the ethics of ML & AI. Since January 2020 highly active in the research, ethics, data sharing, and policy discussions on COVID-19, having organised more than 40 global webinars and coordinating research across HICs and LMICs. Recently engaged in the policy, ethics and regulation data in times of crisis. He founded the Ukraine Clinical Research Support Initiative (UCRSI) in cooperation with leading Ukrainian, European, and international organizations. He is Co-chairman of the EOSC Future / RDA Artificial Intelligence and Data Visitation Working Group & EOSC Future / RDA Ambassador for Ethics & Law. He is a member of the FAIRsharing Community Curation Programme at FAIRsharing.org. He co-founded the Ukraine Clinical Research Support Initiative (UCRSI). He is the Executive Director of the Good Clinical Practice Alliance – Europe (GCPA) and the Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) in Leuven, Belgium. He coordinated the GCPA-SIDCER European Fellowship in Research Ethics (EFRE). He is the past Secretary General of the European Forum for Good Clinical Practice (EFGCP), where he also served as the Board’s Ethics Officer and Chairman of the Ethics Working Party. He chaired the methodologies sub-group of the Real Word Data Working Group at the Faculty of Pharmaceutical Medicine, Royal Colleges of Physicians, and sat for three years on their Ethics & Practice Committee. He is a Global Fellow in Medicines Development Program (GFMD) and currently a member if the Ethics Working Group of the International Federation of Associations of Pharmaceutical Physicians and Pharmaceutical Medicine (IFAPP).

Members

Kevin ASHLEY

Director, Digital Curation Center
Edinburgh, Scotland, UK

Kevin is the Director of the Digital Curation Centre, a post he has held since April 2010. The DCC is a consortium run from the University of Edinburgh whose mission is to assist researchers and research organisations around the world to get better value from data. His earlier career was spent in a variety of roles providing computing services to support research, initially in a large clinical research facility and latterly in a national supercomputer centre. His role in operating services for government and research data led to an interest in data policy and governance, particularly when the creators, maintainers, custodians, owners, service providers and users of data are distinct and changing entities. He is currently vice-chair of the Digital Preservation Coalition, co-chair of the Research Data Alliance Organisational Advisory Board and a member of a number of advisory boards relating to research data.

For further information, see his profile on the DCC site: http://www.dcc.ac.uk/about-us/dcc-staff-directory/kevin-ashley

Burcak Basbug

Professor of Statistics and Disaster Science at the Middle East Technical University (METU), Ankara, Turkey

Burcak, a Professor of Statistics and Disaster Science at the Middle East Technical University (METU), Ankara, Turkey. She was the Course Director MSc Disaster Management and Resilience, Coventry University between August 2019 and August 2020. Before joining Coventry University back in 2018, She was the Director of the METU Disaster Management Centre between 2008 and 2018. She received her SFHEA in the UK as of October 2019. She worked as the Academic Partnerships Director of the ICPEM (Institute of Emergency Management and Civil Protection), November 2019 to date.

She is the lead of the disaster and emergency management working group of the Ankara City Council. She is the special advisor to the former Turkish PM Prof. Ahmet Davutoglu in all disaster, crisis and emergency management related policies. She has 23 years of international work in teaching, consulting and training in disaster risk reduction, disaster risk management with expertise on policy development in disaster risk reduction, disaster risk management, resilience, accountability, financial management strategies for disaster losses, the Turkish Catastrophe Insurance Pool, catastrophe insurance, disaster risk management education. She have been in the field for Syrian Refugee Camps 2015, 2011 Van Earthquakes, May 2014 Soma Mine Fire, 2020 Giresun Flood, 2020 Izmir Earthquake.

Paul Arthur BERKMAN

Professor, Tufts University
Boston, MA, USA

Professor Paul Arthur Berkman is building connections between science, diplomacy and information technology to promote cooperation and prevent discord, balancing national interests and common interests for the benefit of all on Earth. He was a visiting professor at the University of California at the age of 24, after wintering the previous year in Antarctica on a SCUBA research expedition. He was a Fulbright Distinguished Scholar and former Head of the Arctic Ocean Geopolitics Programme at the University of Cambridge, where he co-directed the first formal dialogue between NATO and Russia regarding environmental security in the Arctic Ocean. He also coordinates the Arctic Options and Pan-Arctic Options projects, involving support from national science agencies in the United States, Russian Federation, Norway, France, China and Canada from 2013-2020. In September 2015, he joined the Fletcher School of Law and Diplomacy at Tufts University as Professor of Practice in Science Diplomacy and is now Acting Director of the Science Diplomacy Center. He has an extensive record of interdisciplinary research and publication, including books on Science Diplomacy as well as Science into Policy. For his contributions, Prof. Berkman has received many awards nationally and internationally. Paul is happily married with two daughters.

Mariel John BOROWITZ,

Georgia Institute of Technology, Atlanta, GA, USA

Mariel Borowitz is an Associate Professor in the Sam Nunn School of International Affairs at Georgia Tech. Her research deals with international space policy issues, including international cooperation in Earth observing satellites and satellite data sharing policies. She also focuses on strategy and developments in space security and space situational awareness. Dr. Borowitz earned a PhD in Public Policy at the University of Maryland and a Masters degree in International Science and Technology Policy from the George Washington University. She has a Bachelor of Science degree in Aerospace Engineering from the Massachusetts Institute of Technology. Dr. Borowitz completed a detail as a policy analyst for the Science Mission Directorate at NASA Headquarters in Washington, DC from 2016 to 2018. Her book, “Open Space: The Global Effort for Open Access to Environmental Satellite Data,” was published by MIT Press in 2017.

Paul BOX

Commonwealth Scientific and Industrial Research Organisation (CSIRO)
Sydney, Australia

Working at Australia’s national science agency, Paul leads a multi-disciplinary research team bringing together social science, economics, institutional analysis, and informatics to research and develop ‘social architecture’ for large distributed system (or information infrastructure). For the past 10 years at CSIRO, he has been actively involved in the research, design and implementation of large scale government and research Information Infrastructure across multiple sectors. His work focusses on the human rather than technical challenges of Info

rmation infrastructures, through an inter-disciplinary ‘social architecture’ approach encompassing institutional analysis and design, digital sociology, standards and policy development and digital economics. This approach supplements traditional technical architecture led approaches and is being used to support the design and implementation of information infrastructure in multiple domains.

Paul has background in in geospatial information technology field. Prior to joining CSIRO in 2009 he worked for 15 years throughout Asia, Europe, and Africa for the United Nations, government, and not for profit organizations designing, implementing and managing geospatial capability across a wide diversity of application areas in sustainable development and humanitarian response.

https://orcid.org/0000-0002-7073-8858

Anne CAMBON-THOMSEN

University of Toulouse Midi-Pyrenees
TOULOUSE – CEDEX

Anne Cambon-Thomsen, MD and immunogeneticists, with degrees in biology, medical statistics and health ethics, is Emeritus Research Director in CNRS (French national centre for scientific research) in Toulouse, France. She works presently in a joint research Unit on epidemiology and public health at Inserm (National Institute for Health and Medical Research) and University Toulouse III Paul Sabatier where she created a societal platform on “genetics and society” in Toulouse. Her most recent researches address the societal aspects of biotechnology, the implications of genomics for public health, especially issues pertaining to biobanks and to complex disease genetics. She has experience in national and European ethics bodies and expert groups. She has been co-director of BBMRI-ERIC (Biobanking and BioMolecular resources Research Infrastructure) Common Service ELSI (Ethical, Legal and Societal issues). Her work with and on biobanks and bioresources and afferent research policies led her to launch the BRIF (Bioresource research impact factor) international initiative since  2010 with focus and data and sample sharing. She has recently been appointed as a member of the EGE (European Group on Ethics in Science and New Technologies) of the European Commission and is Chair of the Deontology and ethics committee of the French National Cancer Institute (INCa). She is the Champion of the EuroScience Open Forum (ESOF) for its 8th edition, 9-14 July 2018 in Toulouse.

CHEN Shun-Ling,

Shun-Ling Chen is an associate research professor and the associate director of Information Law Center at the Institutum Iurisprudentiae, Academia Sinica (Taipei, Taiwan). She received her S.J.D. from Harvard Law School in 2013. She works in fields where society, information technologies and the legal system intersect, including the allocation of resources related to intellectual property law. She spent years studying the development and enforcement of communal norms in online peer production communities, as well as how these communities negotiate externally with established institutions.

Christopher ZHU

Imperial College London
England, UK

Christopher ZHU is a dedicated researcher in the fields of data science, artificial intelligence, and environmental finance, now conducting his research at Imperial College London. Christopher has also studied at the Oxford Mathematical Institute, University of Oxford. He is an experienced speaker at conferences and seminars. His research work in financial engineering has been recognized at various academic forums with multiple awards such as the United Nations World Data Forum and the China Financial Engineering Annual Conference, where his paper has won numerous awards, including the “Best Paper Award,” “Excellent Paper Award,” and “Academic Research Award “.

Beyond his academic pursuits, Christopher has contributed to the financial and technological industry, holding leadership roles at renowned international organizations. As the co-founder of his venture capital club in New York, he has actively supported high-tech start-ups, particularly those catering to young professionals in the Chinese-American community. He has also frequently offered political counsel to various entities, including the United Nations, the European Union, UNESCO, and the SAR governments.

Christopher’s influence extends globally, having represented China at the United Nations Economic and Social Council Youth Forum in New York, where he was recognized with the special award for outstanding leadership, commended by senior UN Commissioners, and featured in official United Nations media coverage. Additionally, he has served as an invited scientist at prestigious international diplomatic and scientific events such as the United Nations World Data Forum, Greater Bay Area Science Forum, ISOSC Beijing, and ISBA Shenzhen.

 

Perihan Elif Ekmekci M.D. Ph.D

TOBB ETU Medical Faculty

Dr. Perihan Elif Ekmekci has expertise in the fields of medicine, ethics, and history of medicine. She holds an M.D. and Ph.D. and is currently affiliated with the Department of History of Medicine and Ethics at TOBB University Medical Faculty, Ankara, Turkey.

Dr. Ekmekci’s educational background includes a medical degree from Ankara University Faculty of Medicine, as well as a Ph.D. in Medical Ethics and History of Medicine from Ankara University. She has also pursued additional academic training, such as a fellowship at Imperial College of London Business School, and a fellowship at the National Public Health Institute of the Netherlands on “Public Health Problems in the EU Countries.” As part of her academic journey, she was awarded the Fogarty International Fellow Master’s Certification in Research Ethics program. This fellowship was based at the Boston Children’s Hospital in the Division of Developmental Medicine and Harvard University School of Public Health. Further enhancing her expertise in research ethics she was a post-doctoral fellow at Western Institutional Review Board, USA.

Dr. Ekmekci has served as an advisor to the Undersecretary of the Ministry of Health and later as the Head of the European Union Department of the Ministry of Health. She has held positions as an Assistant Professor and currently serves as the Head of the History of Medicine and Ethics Department and Deputy Dean at TOBB University Medical Faculty, the Head of the International Chair in Bioethics/WMA Cooperation Center (formerly UNESCO Unit for Bioethics) o, member of Open Science Committee of TOBB ETU, and as the Chair of the Institutional Review Board (IRB) of TOBB University Medical Faculty.

Dr. Ekmekci is affiliated and is an active member of several professional societies and scientific boards, including the World Association for Medical Law, the European Network of Research Ethics Committees, European Open Science Cloud Task Force, the International Forum of Teachers (IFT) of the International Bioethics Chair in Bioethics, and the Research Data Alliance. She has also contributed to various publications, addressing topics such as artificial intelligence, bioethics, ethical decision-making during public health emergencies, and the ethics of emerging technologies.

LEE Jeonghoon

Head, Scientific Data Strategy Lab, Korean Institute for Scientific and Technical Information
Daejeon, KOREA

Dr. Jeonghoon Lee is part of the Policy Division at Korea Institute of Science and Technology Information (KISTI). His current work explores strategy and policy to cultivate data economy in Korea. He has developed data-intensive science research environment based on information technologies, established national-wide scientific data governance infrastructure, and supported the Ministry of Science and ICT with technology and policy for management and sharing of research data. He has been participating in activities of international cooperative networks for open data like CODATA, WDS, RDA, and OECD. Previously, he was a research professor at École Centrale Paris, France. He received his B.S. in Computer Science from Yonsei University, Seoul, Korea and M.S. and Ph.D. degrees in Computer Science from Korea Advanced Institute of Science and Technology (KAIST), Daejeon, Korea. His research interests include science policy, dynamic data-literature interlinking, data mining and machine leaning on evolving data, data management and information retrieval on large, high dimensional and complex attributed data, and high-performance computing and parallel processing for machine learning and information retrieval.

Hans PFEIFFENBERGER

Dr. Hans Pfeiffenberger is an independent consultant on scientific data infrastructures and policies. Until recently, he led the IT Infrastructure Department at the Alfred Wegener Institute, Helmholtz Centre for Polar and Marine Research in Germany. Hans has been chair of the Helmholtz Open Science working group, has advised the Knowledge Exchange and chaired the Science Europe policy working group on Access to Research Data. He is also founder and now member of the advisory board of the journal Earth System Science Data, an early data journal providing quality assurance to published data through peer review, since 2008. He received his doctoral degree in Physics from the Technical University of Hannover – now Leibniz University Hannover – (1987). (see also: www.hans-pfeiffenberger.de)

Mark THORLEY

Mark is a research project manager within the Data Division of the Scientific Computing Department of the Science and Technology Facilities Council, part of UK Research and Innovation, where he is involved in projects supporting and developing the European Open Science Cloud (EOSC). He is currently part of the Secretariat team for the H2020 EOSCsecretariat.eu project and was also Manager for EOSCpilot project, that supported the first phase of the development of EOSC.

He has an extensive background in research data management, open access and open data, gained from 27 years working for the UK’s Natural Environment Research Council (NERC). A botanist by degree he initially worked in industry as a software developer in both finance and pharmaceuticals before joining NERC’s British Antarctic Survey to run a data centre for the BIOMASS international marine research programme, progressing to become Manager of the NERC Antarctic Environmental Data Centre, and eventually NERC’s Head of Science Information. In that role he was responsible for activities relating to scientific data and information management, including libraries, high-performance computing, data policy and NERC’s network of environmental data centres. He was a member of the group that produced the UK Concordat on Open Research Data and was prominent in the development and implementation of the Research Councils’ Policy on Open Access.

Mark is a member of the OECD Advisory Group that is currently revising the OECD Recommendation on Access to Research Data from Public Funding, and he helped to develop the initial version of the recommendation in 2006. He is a member of the Science Europe Working Group on Data Sharing and Supporting Infrastructures and chairs its Task Group on Sustainability of Research Data, which is currently developing maturity matrices to outline the activities that research organisations need to undertake to advance their activities in research data management in a sustainable manner.

Between 2010 and 2016 Mark was a member of the Executive Committee of CODATA, and was also a member of the ICSU Committee on Freedom and Responsibility in the Conduct of Science (CFRS) between 2015 and 2018.

Paul UHLIR

Consultant, Information Policy and Management (National Academy of Sciences, retired)
Callicoon, NY, USA

PAUL F. UHLIR, J.D., is a consultant in information policy and management. He was Scholar
at the National Academy of Sciences (NAS) in Washington, DC in 2015-2016, and Director of the Board on Research Data and Information at the NAS, 2008-2015. Paul was employed at the NAS from 1985-2015, first as a senior staff officer for the Space Studies Board, where he worked on solar system exploration and environmental remote sensing studies for NASA, and then as associate executive director of the Commission on Physical Sciences, Mathematics, and Applications. He directed the Office of International S&T Information for eight years after that, where he organized projects and meetings on scientific data throughout the world, and from 1992 to 2015 he was director of the US CODATA at the NAS. Before joining the NAS, he worked in the general counsel’s office at the National Oceanic and Atmospheric Administration of the Department of Commerce in Washington, DC.

Paul has written or edited 27 books and over 70 articles, mostly in data law, policy, and management. He speaks worldwide on these topics and consults to governments, professional organizations, and universities. In 1997 he won the National Research Council’s Special Achievement Award and in 2010 the CODATA International Prize, both in the field of data policy. He was elected Fellow of the American Association for the Advancement of Science in 2011.

Paul has a B.A. degree in world history from the University of Oregon (1977), and a Master’s degree in foreign relations and a Juris Doctor degree from the University of San Diego (1983, 1984). For more detailed information about his professional activities, see his website at: www.paulfuhlir.com


Joseph WAFULA

Professor, ICT Centre of Excellence and Open Data, Jomo Kenyatta University of Agriculture and Technology
Nairobi, KENYA

A member and the Chair of CODATA Kenya. A member of the editorial board of the Data Science Journal; editorial board of the African Journal of Food, Agriculture, Nutrition and Development; committee of the  AFRICA-ai-JAPAN Project Taskforce Project sponsored by JICA; training committee of the National Industrial Training Authority-Kenya; and the ccommittee of the United Nations SDGs on Agriculture and Climate Change Pillars of Kenya.

He coordinate all ICT related Memorandum of Understanding between JKUAT and partners.

He holds a BSc. Science (Hons) (Kenyatta University), MSc. Physics (University of Nairobi), M.Phil. Microelectronic Engineering and Semiconductor Physics (University of Cambridge –UK), Summer Doctoral Program (Berkman Centre for Internet & Society/Oxford Internet Institute’s -Harvard University Law School), and PhD Information Technology (JKUAT).

Prof Wafula is a recipient of two IBM awards namely: the 2016 IBM Shared University Research Award on Open Data Cloud Project for JKUAT for building an open data platform for researchers in Africa, and the 2014 IBM MEA Award, for capacity building in Mobile Application development. He is professionally certified in various fields including Cyber Security, Mobile Application, ISO/IEC 27001:2005 Information Security Management System, Leadership and Management capacity Development, Sage ACCPAC ERP Financial and Operations Management Systems, and ISO 9001:2000 on Quality Management Systems.

He is a fellow of the Computer Society of Kenya and the Cambridge Commonwealth Society and has published book chapters, a book and research papers in peer reviewed international journals. He is an Associate Professor in the Department of Computing at JKUAT and the founder Director of the ICT Centre of Excellence and Open Data (iCEOD).

YARIME Masaru

Associate Professor, Division of Public Policy, Hong Kong University of Science and Technology, Hong Kong

YARIME Masaru is an Associate Professor at the Division of Public Policy in the Hong Kong University of Science and Technology. He also has appointments as Honorary Associate Professor at the Department of Science, Technology, Engineering and Public Policy (STEaPP) in University College London and Visiting Associate Professor at the Graduate School of Public Policy (GraSPP) in the University of Tokyo. His research interests center around science, technology, and innovation policy for energy, environment, and sustainability. He has been engaged in investigating the interactions between technology and institutions in creating sustainability innovation, particularly exploring policy and governance challenges in data-driven innovation, including AI, IoT, and smart cities. He received B.Eng. in Chemical Engineering from the University of Tokyo, M.S. in Chemical Engineering from the California Institute of Technology, and Ph.D. in Economics and Policy Studies of Innovation and Technological Change from Maastricht University in the Netherlands. His previous appointments include Senior Research Fellow at the National Institute of Science and Technology Policy, Visiting Scholar at the Japan International Cooperation Agency Research (JICA) Institute, and Visiting Associate Professor at the School of Environment and Society in the Tokyo Institute of Technology.

Personal Web Page: http://yarime.net/


ZHANG Lili

Computing Network and Information Center, Chinese Academy of Sciences
Beijing, CHINA

Zhang Lili is a research scientist in the scientific data center at the Computer Network Information Center of Chinese Academy of Sciences. Zhang received her M.A. and Ph.D. degree in information management from Peking University, China and she also graduated from Nankai University, China with a dural Bachelor’s degree in management science and economics. Her research focuses on research data sharing policy, practices and information economics.Currently, she also serves as the deputy director of editorial office of China Scientific Data (www.csdata.org) which is the leading data journal publishing bilingual data papers of multidisciplinary fileds in China.