Introduction

The rapid proliferation of life science data presents tremendous opportunities to address long-standing challenges in health, agriculture, the environment, and other sectors. However, many of these data are sensitive and represent significant investment on the part of individuals and communities, institutions, industries, and governments. Furthermore, different types of life science data (e.g., genetic vs. nongenetic, human vs. animal) raise different considerations for data sharing and protection. To maximize the benefits of data sharing, protect the integrity of research investments, and minimize risks to personal privacy and national security, it is important for data to be collected, digitized, secured, and shared responsibly.

To exchange experiences and collaboratively explore best practices for protecting life science data and promoting responsible data sharing in Central Asia, the U.S. National Academies of Sciences, Engineering, and Medicine convened a workshop series titled “Engaging Scientists in Central Asia on Life Science Data Governance Principles,” held virtually across six 2-hour sessions in May and June 2023. The workshops convened early-career and established scientists, legal experts, and data science and cybersecurity experts from Central Asia, the United States, and elsewhere to explore current practices and limitations, goals and concepts relevant to advancing data governance, and opportunities for improvement.

The statement of task for this activity can be found in Appendix A; agendas for each workshop are provided in Appendix B; and Appendix C provides biographies of the workshop planning committee members. Appendix D presents a list of individuals who participated in one or more sessions, organized by country. Seven papers commissioned for this workshop are available in Appendix E. And a list of international and national resources shared throughout the session can be found in Appendix F. Each consecutive workshop built on the previous workshop to ensure continuity of discussion and maximize the benefit to participants. The first workshop set the stage with a sampling of life science research efforts in the Central Asian countries of Kazakhstan, Kyrgyzstan, Uzbekistan, and Tajikistan. The second workshop examined data governance principles and practices in different countries and explored their role in international research collaborations. In the third workshop, participants considered the benefits and risks of sharing biological data, and in the fourth workshop, participants reviewed existing national practices, policies, and norms around life science data sharing in Kazakhstan, Kyrgyzstan, and Tajikistan. The fifth workshop focused on specific practices relevant to managing cybersecurity risks. In the sixth and final workshop, participants reviewed key takeaways from the previous sessions, described examples of key needs and opportunities for enhancing data governance for life science in Central Asia, and discussed future opportunities to further examine these issues and inform decision-making to ultimately improve existing data governance policies and practices.

This proceedings of a workshop series summarizes the discussions at each of these six workshops. It was produced by rapporteurs on behalf of the National Academies based on recordings, slides, and transcripts from the workshops. Participants were informed that by participating in the workshop series, they consented to their comments being recorded and used for the purposes of this proceedings. It is intended as a factual reflection of the discussions at the workshops and does not represent consensus views or recommendations-

of the National Academies. Comments or viewpoints reflected in this proceedings should be attributed to the individual, not their organization, unless otherwise stated.