6
Implementing Best Practices for Life Science and Biological Data Governance

In the sixth workshop, held on June 20, 2023, organizers summarized what was learned from the previous five workshops and facilitated a collaborative discussion to explore areas on which to build. They also discussed potential future opportunities to continue the conversation with a broader set of participants. Participants highlighted several concrete suggestions that Central Asian countries can implement to improve their data governance frameworks, infrastructure, and expertise to participate in international collaborations more fully.

HIGHLIGHTS FROM THE WORKSHOP SERIES

Lusine Poghosyan, Columbia University (United States), offered a high-level summary of the previous workshops in the series. In the first workshop, participants presented a sampling of life science research efforts in Central Asia. Scientists from Kazakhstan, Kyrgyzstan, and Uzbekistan, working in veterinary medicine, infectious disease, antimicrobial resistance, genomics, and botany, shared their successes and challenges conducting life science research, digitizing data, and contributing to international databases. She observed some key challenges facing the region’s research efforts, with common limitations including a dearth of comparison data from the region; difficulty accessing biobanks and other technological resources; and limited expertise in some areas, such as data science. A key question coming out of these discussions was the degree to which Central Asian governments, institutions, and researchers have identified research goals and investment priorities, Poghosyan noted.

At the second workshop, focused on data governance principles, several participants suggested that successful international collaborations hinge on developing and adopting data interoperability standards and harmonizing national data sharing and security laws. While there are no international data governance laws, several organizations offer resources and guidelines for responsible data sharing across borders, including the United Nations Educational, Scientific and Cultural Organization, the World Health Organization, and the Global Alliance for Genomics and Health.

During the workshop, data governance experts from Germany, India, Taiwan Uganda, and the United States described their data sharing laws and norms as potential models for other countries to learn from in addressing challenges and improving upon their own data governance frameworks. Throughout these discussions, speakers highlighted challenges in data management and international data sharing, such as the cost of long-term data storage and the lack of advanced infrastructure and subject matter expertise in some regions. A question coming out of this workshop was the extent to which data sharing and protection laws in other countries may affect or influence the data governance trends in Central Asia, Poghosyan said.

The third workshop considered the benefits and risks of sharing biological data. While the notion of open science is seen as key to advancing life science research, it is

important to remember that tribal and Indigenous communities worldwide have been harmed and disenfranchised by unethical research practices. Through efforts such as the Native BioData Consortium and digital tools such as blockchains, Indigenous communities are exploring methods of protecting and stewarding the data and knowledge their communities hold, in order to have a greater say—and a greater share of the benefits—in research that draws on their knowledge and impacts their communities.

Each of the five Central Asian countries has communities with unique traditional knowledge that not only holds great personal and spiritual meaning but also may be important for the survival of these communities. Several speakers suggested that stronger legal protections may be needed to preserve traditional knowledge. In addition, since there are inequities in communities’ ability to access resources and expertise on intellectual property and patent law, empowering these communities to navigate the powers and protections they do have is important. Many participants suggested that different data types require different considerations of risk, use, and sharing, and exchanged different perspectives on the definitions of and roles for ethics, equity, and equality in science. “Through discussion, we discovered that the way we talk and think about ethics, equity, and equality may differ in different contexts and cultures, presenting us with the opportunity to continue having conversations with each other about these essential concepts and the chance to pursue a common lexicon to further facilitate scientific collaboration across borders and across cultures,” said Poghosyan.

In the fourth workshop, speakers reviewed existing national practices, policies, and norms around protecting and sharing life science data in Central Asia; described unique features, common challenges, and common goals; and explored ways to improve data governance policies and implementation. Existing policies and practices address electronic governance, conflicts of interest, personal data, biometric registration, genetic resources, and centralized digitization efforts.

During the discussion period, panelists stressed the importance of data sharing with standardized protocols and appropriate security measures. They also described common challenges with data sharing, including limitations in available data and computing power; a lack of expertise in cybersecurity, artificial intelligence, and digitization; and the importance of improved digital infrastructure. Despite these challenges, Central Asian scientists can participate in international collaborations and are establishing a regional genomics repository, Poghosyan noted.

The fifth workshop focused on cybersecurity risk management to maintain the confidentiality, integrity, and availability of life science data. Speakers commented that a commitment to open science includes a responsibility to share data in a secure and meaningful way to advance science. Cyberattacks can disrupt research and compromise sensitive data, and every project can balance open data sharing with risk assessment, especially when international collaborations or dual-use research are involved. Speakers discussed several approaches to advancing cybersecurity in scientific organizations, including basic cyber hygiene, resources, and practices, along with more intensive cyber resilience strategies. Panelists also emphasized the importance of vigilance in the face of social engineering methods, such as phishing, which can manipulate staff into divulging sensitive information, such as passwords and personal information.

KEY LEARNINGS AND REGIONAL CONTEXT

Faina Linkov, Duquesne University (United States), moderated a discussion in which participants reflected on what they learned from the workshop series; discussed differences in approaches, needs, and priorities among countries; and considered how engaging a broader audience could further enhance and expand upon the workshop themes.

One broad takeaway, Poghosyan stated, is that researchers have an obligation to share data responsibly to move science forward; this means they must recognize cybersecurity threats and implement appropriate data protections. Working with data takes time and resources, and scientific progress involves a solid foundation for data protection and sharing. Yann Joly, McGill University (Canada), agreed, but noted that “the devil’s in the detail[s].” He noted that creating an agreed-upon international data governance framework involves work to integrate and harmonize the disparate national laws, to create incentives to motivate scientists to use responsible data sharing practices, and to design clear policies that protect researchers’ data and intellectual property.

Linkov observed that each country’s National Academy of Sciences operates differently. In the United States, it is an independent entity that advises the government and receives federal funding for some activities but is nongovernmental and independent. Two participants from Kyrgyzstan, Damira Ashiralieva and Jailobek Orozov, explained that the National Academy of Sciences Kyrgyzstan works directly within the Department of Education and Science. Its institutes cover a wide range of life science topics and participate in government, nongovernment, and international collaborations, always working closely with the appropriate government agencies, including lawyers from the Ministry of Justice, to ensure legal compliance. Azizakhon Haidarova of the Tajikistan Branch Office of the International Science and Technology Center (ISTC) stated that the Tajikistan National Academy of Sciences is a state organization, and that obtaining the necessary government permission to implement certain projects, especially within the framework of international exchanges and cooperation, may not always be an easy process. Haidarova noted that while she understands that obtaining proper permission is necessary for scientists in her country, there are occasions when the time frame to obtain such permission is delayed, and this can greatly complicate the work of scientists. Linkov wondered if this hierarchical nature could pose a barrier to research, and Haidarova noted that persistence and persuasion from project leaders is necessary to move science forward.

Ashiralieva expressed her appreciation for the opportunity to compare the data sharing policies of Kyrgyzstan with those of other countries, meet new potential collaborators, and learn about cybersecurity threats and practices. Haidarova and Samariddin Barotov, Tajikistan Node of the Global Biodiversity Information Facility, agreed, and both suggested that these topics could be brought to wider audiences across Central Asia by holding face-to-face meetings of legislators, lawyers, and information technology professionals, in addition to scientists and researchers, to learn from international experts and collaboratively explore data governance problems and legislative and regulatory solutions. “Such meetings should be held for a wider audience,” Haidarova emphasized. “I am, of course, a patriot of my own country, and I am always concerned about its interests; but [being a] patriot does not mean talking about our country’s superiority or asserting that it is problem free. A patriot will offer ideas for solving existing problems,” she continued. Haidarova

and Barotov noted that Tajikistan does not have a single regulation or law relating to medical data protection, and it would benefit greatly from such meetings to spread awareness of these issues among the legal community and decision-makers, in addition to scientists.

Participants offered several observations about which audiences were not present at the workshops and what other groups might be well positioned to contribute to and benefit from discussions of these issues. Linkov suggested that an inclusive approach is needed so that people of all age groups and experience levels—from students to lawmakers to subject matter experts to representatives from ministries, community organizations, and marginalized groups—can be better equipped to influence data sharing and data governance policy and practice in Central Asian countries. Ashiralieva agreed, noting that ministry representatives and institutional leaders need this information to develop research recommendations and approve curriculum changes, and students need this information to become competent in research design and data security and analysis. Namazbek Abdykerimov, Institute of Biotechnology of the National Academy of Sciences (Kyrgyzstan), suggested using a neutral and common forum, such as the ISTC, for developing additional levels of cooperation. Nurbolot Usenbaev, Republic-Level Center for Quarantine and Highly Dangerous Infections of the Ministry of Health of Kyrgyzstan, noted that the leaders of Central Asia’s regional scientific groups, which design collaborative research projects that require life science data sharing, should also be included in future discussions to inform their efforts to establish guidelines for transparency and responsible data exchange.

Rita Guenther, U.S. National Academies of Sciences, Engineering, and Medicine suggested that meeting in person could enable more voices at the table to collaborate on solutions that balance benefits and risks, and deepen the conversations around these collective, continuous challenges. In-person meetings can also create more sustained cooperation and engagement, although this involves continuous time and resource demands. “I feel that it is very important to try to continue these types of discussions over time,” Guenther said. “These challenges that we are facing collectively are problems and challenges that will always be with us when we speak about the balance between positive contributions to society from science, and the need to also make sure that those . . . are the only contributions and that there are no negative ramifications of that, unintended or otherwise.” Linkov agreed, calling for “sustainable development, sustainable implementation, and sustainable collaboration.”

EXAMPLES OF POTENTIAL NEXT STEPS

Looking forward, Linkov highlighted four ways that the best practices described during the workshop series could be implemented and advanced. First, regional or national scientific networks consisting of data repositories, scientific societies, journals, and conferences can be created. Some of these already exist or are being built, and enhancing or expanding them will be a great step forward, she said. Second, funding sources can be investigated for in-person meetings and sustained engagement, initiatives, and collaborations. Third, Central Asian scientists could consider publishing their work in journals and use repositories that are available to a wider audience internationally. For their part, Western researchers can offer scientific communication training to help overcome language or cultural barriers. Finally, Linkov said that engaging diverse groups of scientists, students,

decision-makers, ministry officials, and other stakeholders in creating a more supportive environment for scientific collaboration can help to expand the reach and benefits of research.

Participants from Central Asia described several additional opportunities for enhancing responsible data practices and informing data governance more broadly. Kalysbek Kydyshov, Republic-Level Center for Quarantine and Highly Dangerous Infections of the Ministry of Health (Kyrgyzstan), suggested that students in Kyrgyzstan would benefit from an organization encouraging international research collaborations. Orozov shared that his country has a successful 6-month, all-expenses-paid internship program with the Japanese International Cooperation Agency, in which early-career scientists receive training in research, writing, and publishing.

Kydyshov also noted that a lack of data scientists in Kyrgyzstan means that while data are collected, data analysis is more limited. He suggested that better access to resources to teach data science techniques could help address this gap. Linkov agreed, noting that data analysis is important for identifying disease trends or outbreaks. She also added that, in her experience, funding is the key to successful collaborations and sustained engagement.

Several participants underscored the value of continuing to converse about these issues to learn from others, inform decisions, and spur action. Ashiralieva shared that Kyrgyzstan conducted in-person partnership reviews with other Central Asian nations and international organizations; in these reviews, participants realized that their shared challenges could be overcome with shared solutions. Ashiralieva found the in-person aspect of the reviews especially rewarding, noting, “Whenever you have tête-à-tête or face-to-face communication, it actually allows us to dig deeper; it allows us to identify underlying problems. It also gives us very specific, very salient information to draw parallels in our experiences.”

Trisha Tucholski, U.S. National Academies, shared that four additional events are being planned to further disseminate the outcomes of the workshop series to decision-makers in Central Asia, and Guenther asked participants to suggest ideas for approaches and areas of focus for these meetings. Ashiralieva suggested that individuals or groups nominate subjects (e.g., cybersecurity) to cover in greater depth, rank the results, and choose the items that seem to resonate with the greatest number of people. She also suggested that more lawmakers, security experts, and other decision-makers for digitization, health, and science should be invited, as their work is relevant to these topics.

Barotov and Kydyshov suggested that meeting in person could help to improve engagement and participation from parties in Central Asia. While the next four meetings are slated to be virtual, Tucholski noted that a third phase of activity could include in-person meetings as early as 2024. Haidarova suggested that it may be easier and more cost effective for American participants to travel to Central Asian countries and offered her country as a venue for offline events, since in her opinion, it is the live format of communication that will provide more opportunities for scientists to learn and have their questions addressed. Ashiralieva suggested that such a meeting could be combined with the Biosafety Association for Central Asia and the Caucasus¹ international conference for biosecurity, which will be attended by scientists from Central Asia, Mongolia, and the Caucasus. Closing the workshop, Tucholski expressed her gratitude to the many speakers

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¹ See https://internationalbiosafety.org/ifba_members/biosafety-association-for-the-central-asia-and-caucasus/.

and participants who brought their experiences and perspectives to create a fruitful exchange over the course of the events.