Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series (2024)

Chapter: Appendix B: Workshop Agendas

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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Appendix B
Workshop Agendas

ENGAGING SCIENTISTS IN CENTRAL ASIA ON LIFE SCIENCES DATA GOVERNANCE PRINCIPLES—A WORKSHOP SERIES

Increasing digitalization in the life sciences has led to numerous opportunities for addressing challenges in health, agricultural, environmental, and other sectors. Life scientists are generating and analyzing large amounts of data from various sources, and although data from scientific research are not necessarily sensitive, they may represent the outcomes of significant investment at individual, institutional, governmental, and industry levels. To protect these investments while also enabling scientific advancement, the U.S. National Academies of Sciences, Engineering, and Medicine is conducting a six-part virtual workshop series to better understand effective practices for the management and protection of life sciences data and knowledge within research institutions. This virtual workshop series aims to engage early-career and established scientists from Central Asia, the United States, and elsewhere to exchange experiences and collaboratively identify best practices for protecting biological and life science data and knowledge, while promoting the responsible sharing of these scientific data. Each consecutive workshop session builds on the previous session, and participants are encouraged to attend as many sessions as possible to ensure continuity of discussion and to gain maximum benefit.

MAY 4, 2023

10:00 am EST Welcome and Opening Remarks
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
Lusine Poghosyan, Columbia University (Committee Chair)
10:05 Introduction
Vasiliki Rahimzadeh, Baylor College of Medicine (Committee Member)
Life Science Data Governance: Principles, Policies, and Practices
10:15 Roundtable: Life Science Research in Central Asia
Moderator: Damira Ashiralieva, Ministry of Health of Kyrgyzstan (Committee Member)
Goals:
  • Highlight life science and biological research efforts across Central Asia
  • Explore the scale and scope of life science and biological data in Central Asia
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Speakers:
Jailobek Orozov (Committee Member)
Director, A. Duisheev Kyrgyz Research Institute of Veterinary Science
Bishkek, Kyrgyzstan
Determination of Bovine Brucellosis Genotypes in Kyrgyzstan
Margarita Ishmuratova (Committee Member)
Professor of Botany, Head of the Research Park of Biotechnology and Eco-monitoring
Buketov Karaganda University
Karaganda, Kazakhstan
The Study of Flora and Fauna in Kazakhstan
Ravshan Azimov
Senior Lecturer, Center for Retraining and Professional Development of Teaching Staff at the Tashkent Medical Academy
Ministry of Higher and Secondary Special Education of Uzbekistan
Tashkent, Uzbekistan
Data Governance for Life Science in Uzbekistan
Nurbolot Usenbaev
Deputy Director, Republic-Level Center for Quarantine and Highly Dangerous Infections
Ministry of Health of Kyrgyzstan
Bishkek, Kyrgyzstan
Microbiotes in Central Asia and Caucasus
Gulnur Zhunussova
General Director, Institute of Genetics and Physiology
Almaty, Kazakhstan
Cancer Genetics and Genomics Studies in Kazakhstan
Sholpan Askarova (Committee Member)
Head of the Laboratory of Bioengineering and Regenerative Medicine Nazarbayev University
Almaty, Kazakhstan
Alzheimer’s Disease Research in Kazakhstan
Faina Linkov (Committee Member)
Professor of Health Administration and Public Health Duquesne University
Pittsburgh, PA, United States
General Research Challenges in Central Asia
11:25 Guided Discussion: Data Practices and Norms for Life Science in Central Asia
Moderator: Lusine Poghosyan
Page 52 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Panelists: Jailobek Orozov, Margarita Ishmuratova, Ravshan Azimov, Nurbolot Usenbaev, Gulnur Zhunussova, Sholpan Askarova, Faina Linkov
Goals:
  • Understand the context-specific national and institutional data practices and norms for life science research in Central Asia
  • Identify existing and emerging challenges related to data management for life sciences research in the region
  • Explore emerging data governance tools and trends in Central Asia
Discussion Questions:
  • Are the data practices (collection, storage, processing, curation, sharing, access, and use) discussed by individual researchers representative of national or institutional practices? Do practices differ between scientific disciplines or sectors?
  • Can you describe some of the challenges you have experienced in your research and how they contribute to your data practices? Are the challenges unique to Central Asia or common internationally?
  • To what degree do issues exist with authorized and unauthorized data access? What policies and practices are in place for enabling data sharing while preventing unauthorized access?
  • Are there cases when scientific research or data is not covered under specific governing policies?
  • What are some emerging methodology, platforms, and technologies for managing and governing data in Central Asia?
11:55 Summary of Key Takeaways
Trisha Tucholski
12:00 pm Closing Remarks
Lusine Poghosyan

MAY 11, 2023

10:00 am EST Welcome and Opening Remarks
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
Lusine Poghosyan, Columbia University (Committee Chair)
10:05 Introduction
Yann Joly, McGill University (Committee Member)
Data Governance Principles for Life Science Across the Globe
Page 53 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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10:20 Roundtable: Data Governance Experts from Across the Globe
Moderator: John Ure, Access Partnership (Committee Member)
Goals:
  • Highlight data governance laws, tools, and frameworks used across the globe
  • Explore norms and emerging trends in data governance approaches for life science and biological research in different areas of the world
Speakers:
Taunton Paine
Director, Scientific Data Sharing Policy Division, Office of Science Policy
National Institutes of Health (NIH)
Bethesda, MD, United States
Federal and NIH Policies for Managing and Sharing Research Data
Fruszina Molnár-Gábor
Professor, International and Health Law and Data Protection Law Heidelberg University
Heidelberg, Germany
General Data Protection Regulation with Respect to Life Science and Biological Data Sharing
Athira P.S.
Director, Centre for Intellectual Property Rights
National University of Advanced Legal Studies
Kerala, India
Life Science and Medical Research in India: Relevance of Robust Data Governance Principles and Structures
Hellen Nansumba
Biorepository Manager, National Health Laboratory Services and Diagnostics
Ministry of Health of Uganda
Kampala, Uganda
Overview of the Role of Regulatory and Governance Frameworks in Human Biological Materials and Data Sharing in the National Biorepository in Uganda
Ya-Hsin Li
Associate Professor and Director, Department of Health Policy and Management
Office of International Affairs
Chung-Shan Medical University, Taiwan
Taiwan’s National Health Insurance Research Database
Page 54 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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11:20 Guided Discussion: Compare and Contrast Approaches to Data Governance
Moderator: Wei Zheng, Vanderbilt University (Committee Member)
Panelists: Taunton Paine, Fruszina Molnár-Gábor, Athira P.S., Hellen Nansumba, Ya-Hsin Li
Goals:
  • Identify similarities and differences in different approaches to data governance presented by the panel
  • Identify gaps and challenges in existing data governance policies and practices
Discussion Questions:
  • What general points of agreement can we identify between the policies and practices for various countries?
  • Taking a broad comparative view on the biological data sharing framework, what differences between featured countries, if any, appear particularly challenging to reconcile?
  • Are there some outliers (countries that stand out because of a particularly distinct data governance regime)? How can we explain their situation?
11:55 Summary of Key Takeaways
Trisha Tucholski
12:00 pm Closing Remarks
Lusine Poghosyan

JUNE 1, 2023

10:00 am EST Welcome and Opening Remarks
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
Lusine Poghosyan, Columbia University (Committee Chair)
10:10 Introduction
Krystal Tsosie
Assistant Professor, Arizona State University (Committee Member)
Indigenous Knowledges, Biological Stewardship, and Community Data Governance
10:30 Zhyldyz Tegizbekova
Associate Professor of Law, Ala-Too International University, Kyrgyzstan
Page 55 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Challenges of Traditional Knowledge Preservation and Protection in Central Asia
Questions for consideration:
  • Is the intellectual property system sufficient to protect traditional knowledge in Central Asian countries?
  • Are special legal measures needed for safeguarding traditional knowledge?
  • What is the role of states to preserve and protect traditional knowledge?
10:50 Samariddin Barotov
Institute of Botany, Plant Physiology, and Genetics
Head, Global Biodiversity Information Facility (GBIF), Tajikistan
GBIF – Kick-starting the Biodiversity Publication Process for Tajikistan
11:00 Guided Discussion
Moderator: Vasiliki Rahimzadeh, Baylor College of Medicine (Committee Member)
Goals:
  • Consider the benefits together with the risks and vulnerabilities of sharing life science and biological data
  • Discuss best practices for sharing data feasibly and equitably
  • Understand how to navigate policies for authorized sharing/access versus unauthorized access
Panelists:
Krystal Tsosie (Committee Member), Arizona State University, United States
Zhyldyz Tegizbekova, Ala-Too International University, Kyrgyzstan
Samariddin Barotov, Global Biodiversity Information Facility, Tajikistan
Margarita Ishmuratova (Committee Member), Buketov Karaganda University, Kazakhstan
Discussion Questions:
  • What are some of the benefits of making data openly available and accessible?
  • What are some potential risks and/or drawbacks associated with open access data? With sharing data? Who incurs these risks?
  • How can risks be managed such that benefits from sharing research are maximized?
  • What protection mechanisms are currently in place to protect data that should be protected, while also ensuring that it can be appropriately utilized and/or shared?
Page 56 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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  • What practices exist to help scientists understand how to prevent unauthorized access to knowledge and data?
  • In addition to scientists and researchers, who is in a position to allow proper access and prevent improper access (e.g., computer/IT personnel, university administration, public health officials)?
  • Who is in a position to make changes or improve current policies of practices for data protection?
11:50 Summary of Key Takeaways
Trisha Tucholski
12:00 pm Closing Remarks
Lusine Poghosyan

JUNE 8, 2023

10:00 am EST Welcome and Opening Remarks
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
10:15 Roundtable: Life Science Data Governance in Central Asia
Moderator: Trisha Tucholski, U.S. National Academies Board on Life Sciences
Goals:
  • Review existing national policies, practices, and norms related to sharing and protection of biological data in Central Asia
  • Identify the associated challenges for sharing and protecting data given the existing policies, practices, and norms
Speakers:
Damira Ashiralieva (Committee Member)
Virologist, National Scientific-Practical Center
Ministry of Health of the Kyrgyzstan
Bishkek, Kyrgyzstan
Ensuring Information Security in Kyrgyzstan
Shakhlo Turdikulova
Deputy Minister, Ministry of Higher Education, Science, and Innovation
Director, Center for Advanced Technologies
Tashkent, Uzbekistan
Biological Data Sharing in Uzbekistan
Zulfiya Davlyatnazarova
Deputy Director, Institute of Botany, Plant Physiology & Genetics
Tajikistan National Academy of Sciences
Page 57 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Dushanbe, Tajikistan
Biological Data Sharing in Tajikistan
11:00 Panel of Experts: Life Science Data Governance in Practice
Moderator: Rita Guenther, U.S. National Academies, Policy and Global Affairs
Goals:
  • Understand how existing policies, practices, and norms translate to real-life scenarios in the field, clinic, and laboratory
  • Explore how existing data governance policies, practices, and norms could be improved or standardized to maximize appropriate sharing of the data with a range of stakeholders
Panelists:
Pavel Tarlykov
Head, Laboratory of Proteomics and Mass Spectrometry
National Center for Biotechnology
Astana, Kazakhstan
Eastwood Leung
Adjunct Professor, International University of Central Asia
Tokmok, Kyrgyzstan
Elmira Utegenova
Deputy Director, Laboratory of Diagnostic Service
Almaty, Kazakhstan
Discussion Questions:
  • What are the types of data that you currently work with? Are there any unique features associated with the data or limitations on its use?
  • Who has access to these data (in the field, in the lab, within partnerships, the government, for-profits, others)? Who determines this? Why?
  • What are the current policies and practices that apply to the collection, processing, analysis, storage, sharing and protection of your data?
  • Are there any cases where existing policies, practices, or norms do not necessarily cover specific data types or cases? Are there gaps in current policies, practices, or norms that are needed to better obtain/maintain the balance of the responsible/appropriate sharing of data with the relevant protection of data?
  • To what degree do issues exist with authorized and unauthorized data access? How is this determined? What policies, practices, or
Page 58 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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  • norms are in place for enabling data sharing and preventing unauthorized access?
  • What would need to happen to improve or standardize current data governance policies, practices, or norms? Who is in a position to make those changes? Why?
11:50 Summary of Key Takeaways
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
12:00 pm Closing Remarks
Lusine Poghosyan, Columbia University (Committee Chair)

JUNE 15, 2023

10:00 am EST Welcome and Opening Remarks
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
Lusine Poghosyan, Columbia University (Committee Chair)
10:10 Introduction
Gautham Venugopalan
Director of International Engagement, Gryphon Scientific (Committee Member)
Cyber Risk Management in Life Sciences Research
10:30 Case Study Discussion
Trisha Tucholski
10:45 Data and Information Security in Central Asia
Moderator: Kavita Berger, U.S. National Academies Board on Life Sciences (Director)
Goals:
  • Discuss existing security practices and their associated challenges
  • Identify needed practices for cyber, data, and information security
  • Discuss differences in risks and practices among institution types and fields.
Discussion Questions:
  • What are some issues to consider in securing life science and biological data and associated innovations?
  • What are existing security practices that may reduce the risk of exploitation or unauthorized access to life science and biological data and knowledge? Are there identifiable gaps or challenges in current practices?
Page 59 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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  • What would researchers or IT staff need (training, information, tools, applications, risk assessments, people, etc.) to be able to implement security practices?
  • Are the security practices discussed today translatable in different national or institutional contexts? If not, why not?
  • Who is in a position to improve cyber- and information security measures or practices?
11:45 Summary of Key Takeaways
Trisha Tucholski
12:00 pm Closing Remarks
Lusine Poghosyan

JUNE 20, 2023

11:00 am EST Welcome and Opening Remarks
Trisha Tucholski, U.S. National Academies Board on Life Sciences (Project Lead)
11:05 Summary of the Workshop Series
Lusine Poghosyan, Columbia University (Committee Chair)
11:15 What Have We Learned? A Review
The Workshop Planning Committee
11:30 What’s Next?
Moderator: Faina Linkov
Associate Professor, Duquesne University (Committee Member)
12:45 pm Preview of Dissemination Events
Trisha Tucholski
1:00 Closing Remarks
Lusine Poghosyan
Page 50 Cite
Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Suggested Citation: "Appendix B: Workshop Agendas." National Academies of Sciences, Engineering, and Medicine. 2024. Engaging Scientists in Central Asia on Life Science Data Governance Principles: Proceedings of a Workshop Series. Washington, DC: The National Academies Press. doi: 10.17226/27156.
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Next Chapter: Appendix C: Workshop Planning Committee Biographies
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