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The Life Science Research Landscape in Central Asia

To launch the workshop series, Trisha Tucholski, U.S. National Academies of Sciences, Engineering, and Medicine, and Lusine Poghosyan, Columbia University (United States), welcomed participants and outlined the goals of the first workshop, held on May 4, 2023. Setting the stage for the discussions to come, the speakers explained that this workshop series was designed to highlight life science and biological research efforts across Kazakhstan, Kyrgyzstan, Uzbekistan, and Tajikistan, explore the scale and scope of life science and biological data in the region, understand national and institutional data practices and norms, discuss existing and imminent challenges related to life science data governance, and explore emerging data governance tools and trends.

LIFE SCIENCE DATA GOVERNANCE: PRINCIPLES, POLICIES, AND PRACTICES

Vasiliki Rahimzadeh, Baylor College of Medicine (United States), offered an introduction to general principles, policies, and practices relevant to life science data governance in Central Asia. Defining life science data as “any data that are related to living organisms and their biological processes,” she underscored the value of these data for advancing understanding of fundamental biology, improving human health, and preserving the Earth’s natural resources. This value depends upon the proper and ethical collection, management, and analysis of data; to this end, she said, those data governance frameworks are needed to advance scientific research, protect and share data, and reflect the values and priorities of communities in Central Asia and elsewhere.

Three central concepts that underpin frameworks for responsible sharing of life science data include privacy, protection, and governance. Privacy is the right to control access to information about oneself. The right to privacy is activated through protections, which generally refer to the collection of laws, policies, and procedures that are applied to data to minimize unauthorized intrusion. Data privacy and protections are the foundation of good governance, which means applying rules to ensure authorized access to stored data, security (standards and technologies to secure data), management (collective storing and sharing processes), and stewardship (functional practices ensuring that data assets are appropriately protected and used according to the values and wishes of those who contributed them).

Rahimzadeh highlighted several attributes of data governance frameworks. First, responsible data governance frameworks respect people. Health, genetic, and genomic data are rich resources for learning more about health behavior, status, and potential preventive practices, but the collection and dissemination of such data also can confer serious risks for individuals, including the risk of reidentification even after biological data have been separated from personally identifiable information. Many national data protection laws address these risks, but the differences among such laws can complicate global life science research. Responsible governance frameworks also advance ethical research practices.

Rahimzadeh noted that maximizing the scientific utility of life science data—often generated in extremely large quantities—requires appropriate storage capacity and computing power, but also a recognition that the data points represent real people who deserve respect and expect their data to be put to good use. “Good governance frameworks really achieve two aims: They maximize the scientific utility of those data, as well as the social value of the research that’s derived from those data,” she said. Finally, she noted that responsible governance frameworks help governments and institutions make informed decisions about how to best preserve the Earth’s resources and habitats for all life.

LIFE SCIENCE RESEARCH IN CENTRAL ASIA

Damira Ashiralieva, National Scientific-Practical Center, Ministry of Health of Kyrgyzstan, moderated a panel highlighting research efforts in Kazakhstan, Kyrgyzstan, Uzbekistan, and Tajikistan on topics ranging from biomedicine to animal diseases to biodiversity. Together, these presentations provided a window into the scale and scope of life science and biological research efforts in the region, along with perspectives on data governance practices and challenges.

Challenges and Best Practices for Engaging Scientists in Central Asia

Faina Linkov, Duquesne University (United States), provided a brief overview of the public health context in which biomedical research is carried out in Central Asia, along with some key challenges related to improving the region’s research infrastructure and data governance practices.

Countries in Central Asia face high rates of both chronic and infectious diseases, such as lung cancer, brucellosis, and cirrhosis, which contribute to a lower life expectancy compared with some other regions of the world (Vos et al., 2020). Compounding these problems, many communities, especially those in rural areas, are exposed to heavy pollution and lack access to specialized medical care. Overall, there is a lack of research infrastructure necessary to monitor and respond to these issues.

Fortunately, many of these challenges can be overcome through preventive and public health initiatives. To enact such initiatives, Linkov said, it is imperative to improve Central Asian research infrastructure, knowledge of effective research methods (especially statistics), and project planning and management resources. In addition, she said that researchers in the region could benefit from better resources and strategies for avoiding predatory publishing practices; disseminating their findings; applying for international funding; and accessing technology, biological samples, research data, pathology services, and research participants.

The imperative to attend appropriately to the ethical considerations surrounding data access and security is important in addressing the above challenges, Linkov said. For this, she suggested that a change to the current research culture is needed. In particular, she emphasized the need for scientists to prioritize best practices such as establishing collaborative publishing teams and data banks; teaching research methods, grant writing, and publishing techniques; and adopting common institutional review board frameworks.

Data Governance for Life Science in Uzbekistan

Ravshan Azimov, Uzbekistan Ministry of Higher Education, and Innovation, and Tashkent Medical Academy (Uzbekistan), discussed data governance concepts and approaches relevant to life science research in Uzbekistan.

Proper data governance ensures that data are collected, processed, and transferred in accordance with study protocols and without being changed, concealed, or distorted in any way, Azimov said. As part of data governance, quality control measures ensure effective research, justify scientific funding, and facilitate the generation of study results that can form the basis for important health management decisions that directly affect people’s lives. In addition, generally recognized international ethical norms urge that biomedical and behavioral research be conducted with respect for people, mercy, and fairness (CIOMS, 2016).

Although research is distinct from the practice of medicine and public health, efforts to collect, analyze, and interpret biomedical data are critical to improving human health, Azimov said. Uzbekistan has introduced new measures to finance research projects, improve staff training and project management, and foster a modern research infrastructure and information environment.¹ In addition, Uzbekistan has enacted targeted measures, laws, and research standards that will improve science effectiveness, make scientific data more widely available, develop interdisciplinary research, and build a knowledge infrastructure with the aim of spurring innovation and economic development. These measures include mechanisms for improved collaboration, digital dissemination, secure data validation and storage, quality controls, and compliance with international ethical and legal measures. Full enactment of these measures will require financial resources and responsible, careful implementation of good practices and standards, Azimov said.

Cancer Genetics and Genomics Studies in Kazakhstan

Gulnur Zhunussova, Institute of Genetics and Physiology (Kazakhstan), highlighted research efforts in cancer genetics in Kazakhstan. Her laboratory at the Institute is one of several scientific institutions with programs in cancer genetics and oncology. As an example, Zhunussova described a project for which she conducted a comprehensive search for genetic predisposition to early-onset breast cancer using next-generation sequencing, and identified novel pathogenic variants that could contribute to the high rates of this cancer seen in Kazakhstan. She has also studied molecular and genetic principles relevant to diagnosis and screening for colorectal cancer, drug development for early diagnosis and targeted therapy of breast cancer and prostate cancer, epigenetic testing for the diagnosis of colorectal cancer, and new molecular genetic methods for preclinical diagnosis of aggressive forms of prostate cancer (Zhunussova et al., 2019).

While some of Kazakhstan’s scientists can access sophisticated laboratory equipment and several genetic and genomic databases, Zhunussova noted that an important limitation is that the population of Central Asia is not well-represented in most databases. In addition, she said, the region’s scientists sometimes struggle to find adequate funding to support large comparison studies.

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¹ Law of the Republic of Uzbekistan; LRU 630-COH 24.07.2020 (see https://lex.uz/docs/5155423).

Alzheimer’s Disease Research in Kazakhstan

Sholpan Askarova, Nazarbayev University (Kazakhstan), discussed progress and challenges in the study of Alzheimer’s disease in Kazakhstan. The etiology of this disease, characterized by beta amyloid plaques in the brain that cause progressive loss of memory and abilities in older adults, is unclear and multifactorial. By investigating gut microbiota alterations in Central Asian patients with Alzheimer’s disease, researchers found correlations between disease severity, certain bacterial taxa, and biochemical blood parameters (Askarova et al., 2020; Kaiyrlykyzy, et al., 2022a,b). This research followed ethical data consent, collection, storage, and access guidelines based on those of the U.S. National Institutes of Health, and the results were shared with the global research community.

While this research represents an important step forward, Askarova noted that her team has faced substantial barriers in pursuing Alzheimer’s disease research in Kazakhstan. She said that the disease is stigmatized and not seen as an urgent medical problem in Kazakhstan. The country lacked official Alzheimer’s disease protocols until 2015, and there is a dearth of trained neurologists to diagnose and treat patients, and a lack of validated neuropsychological tests in the Kazakh language. This has led to a striking lack of fundamental data about the disease’s prevalence in Central Asia. In addition, there is no nationwide patient recruitment structure in Kazakhstan, and Central Asia lacks specialized Alzheimer’s disease clinics and biobank registries; as a result, few publications or data sources are available for comparisons. Because of these barriers, Askarova said that it took her 5 years to gather enough participants for her studies. However, she remains committed to advancing this work, and her team is now initiating genome sequencing studies and metagenomic bacterial studies.

Antibiotic Resistance Issues in Kyrgyzstan

Kalysbek Kydyshov, Republic-Level Center for Quarantine and Highly Dangerous Infections, Ministry of Health of Kyrgyzstan, presenting on behalf of Nurbolot Usenbaev, reviewed research aimed at addressing microbial threats and antimicrobial resistance in Kyrgyzstan.

Studies of hospital patients have shown several antibiotic-resistant pathogens present in the country, including strains of Escherichia coli, Staphylococcus, and Proteus. Kyrgyzstan currently monitors antibiotic resistance by following the recommendations of both its Ministry of Health and the European Committee on Antimicrobial Susceptibility Testing (EUCAST, n.d.). To improve early laboratory diagnosis of antibiotic-resistant pathogens in the country, researchers have developed an atlas of basic bacteriology; created standard operating procedures for sampling, storage, and transport; and started a collection of research data. Development of a clinical protocol to study microbiota is also underway.

To continue this progress, Kydyshov identified several key needs. In the research realm, he suggested the country needs to increase laboratory capacity, reduce research costs, and investigate genetic mechanisms and resistance genes. Where research and clinical areas intersect, he said, it is important to improve training among clinicians, epidemiologists, clinical pharmacologists, microbiologists, and other specialists; update regulatory and methodological frameworks to determine microorganisms’ sensitivity to antibiotics; widely share antimicrobial resistance information and monitoring tools; and develop effective treatments that reduce the risk of complications.

Determination of Bovine Brucellosis Genotypes in Kyrgyzstan

Jailobek Orozov, A. Duisheev Kyrgyz Research Institute of Veterinary Science (Kyrgyzstan), shared research on brucellosis, an infectious disease that can be transferred to people from farm animals such as sheep and cattle. Brucellosis is an underdiagnosed and underreported public health and veterinary medicine problem in Kyrgyzstan, Orozov stated, although human infections have plummeted since a national animal vaccination program began in 2011.

Orozov explained that brucellosis infections can be studied through epidemiological monitoring; serological methods; bacteriological methods; and molecular-biological methods, such as gene sequencing and polymerase chain reaction tests. Farm animal movements are registered and monitored in Kyrgyzstan via the country’s Animal Identification and Tracking System, which reinforces national oversight, provides systems to prevent and respond to infections, and encourages global and domestic cooperation.

In addition to domestic genetic research, Orozov noted that scientists in Kyrgyzstan also collaborate with researchers in other countries, including by exporting samples, through memoranda of cooperation in line with the Cartagena and Nagoya Protocols (Convention on Biological Diversity, n.d.a,b). These memoranda are amended from existing templates to fit the conditions of the research, Orozov noted.

Research on Flora and Fauna in Kazakhstan

Margarita Ishmuratova, Buketov Karaganda University (Kazakhstan), highlighted goals and challenges of studying biodiversity in Kazakhstan, which is the world’s ninth-largest country and home to many unique endemic species. Plant and animal biodiversity is vitally important to global ecosystem stability, yet it faces serious threats from anthropogenic activities and climate change. Unfortunately, Ishmuratova said, a variety of factors create barriers to cataloging and studying biodiversity in Kazakhstan. Some of these factors are environmental; for example, the country’s desert climate makes field work challenging. In addition, there is a lack of digitization of scientific resources. The country’s scientific journals are neither digitized nor openly accessible (Ryabushkina et al., 2016), and because most herbarium collections are not present in electronic form, researchers can only access samples and data in person, Ishmuratova said. She continued, “That means researchers, especially young beginners, have a problem—we do not have normal access to information and foreign colleagues don’t have that access either.”

Even where data from Kazakhstan are digitized, such as in international databases like the Global Biodiversity Information Facility (GBIF), she noted that it is not representative of the entire country (GBIF, n.d.a). To ensure better access to Kazakhstan’s biological diversity data, scientists from across the country are collaborating to conduct workshops aimed at teaching researchers and students how to digitize and disseminate biodiversity data through GBIF and other platforms.

SUMMARY

As several speakers noted, Central Asia’s life science data are of great value and deserve to be both accessible and well protected. This first workshop offered a view of the life science research landscape in select Central Asian countries, covering a wide range of areas from chronic diseases to antimicrobial resistance to animal diseases and biodiversity.

Drawing from the experiences of researchers and data experts from Kazakhstan, Kyrgyzstan, the United States, and Uzbekistan, workshop participants also shared examples of important research infrastructure needs and considerations for future data practices and norms, data management strategies, and data governance tools in the region, laying a foundation for deeper discussions of these areas in future workshops.