Support for Research Biobanks Among Medical Students in the Republic of Kazakhstan

Introduction

Biobanks are specialized facilities that collect and store human biological materials (HBM) (i.e., DNA, blood, saliva, urine and other bodily fluids, bone marrow, cells, tissues) and relevant information about the donors (physical, behavioral, sociopsychological characteristics, but also personal data, i.e., residential address, contact phone numbers, and medical history) for medical and research purposes. ¹ Because biobanks have provided a platform for innovative biomedical research over the past few decades, numerous biobanking institutions were created or formed from existing collections of human biospecimens in many parts of the world, including Central Eastern Europe (CEE), the Commonwealth of Independent States (CIS), and East Asia.^2,3 This should come as no surprise since widespread collection and use of human biosamples and associated patient clinical information are likely to help identify the genetic basis of many diseases and develop new diagnostic and therapeutic methods. This, in turn, may lead to the development of personalized medicine.^4,5

Biobanking in the Republic of Kazakhstan (RoK) began some 30 years ago. While it was dominated by small repositories created by universities or the biopharmaceutical industry, created mainly for the benefit of their own research or the particular needs of their specific projects, ⁶ institutional and state repositories, commercial biological repositories, and population and virtual biobanks have also been gradually developing. There are therefore currently many biorepositories in Kazakhstan, that is, the Brain Cancer Biobank Astana and the DNA Biobank “Miras” Almaty.^7–9

For many years, however, biobanking in Kazakhstan was loosely formalized and lacked the standard conditions and quality control protocols required by biomedical organizations. ¹⁰ In 2020, the rules for conducting biomedical research and the requirements for research centers were therefore approved by the Minister of Health Care of the RoK. ¹¹ Legislation regarding the creation and activities of biobanks has also been introduced.^12,13 A number of storage protocols and projects aimed at standardizing preanalytical, analytical, and postanalytical processes have therefore been adapted to enhance the quality control of biosamples. This includes addressing aspects such as storage temperature and conditions, the timing of biospecimen processing, the frequency of access to biospecimens, and the availability of storage space.^14,15

Significantly, all these regulations stress that a biobank may be established in the RoK on the basis of health care organization, organization of higher and postgraduate education, and scientific organization. They also emphasize that every research center creating a biobank has to employ staff with field-specific education that assures high-quality research. ¹²

The success of every biorepository depends not only on the investment in specialist equipment and infrastructure; the suitability of the collection of biosamples, their storage and transportation; assurance of the adequacy of the number of donors, but also on the creation of a new generation of competent biobankers who will help disseminate the idea of biobanking throughout the society and who will support donation for research purposes.^16–18 Although many health care professionals (HCPs) will encounter topics related to biobanking in their professional careers, no formal biobank education programs exist in Kazakhstan, and neither biomedical research nor biobanking has been integrated into Kazakh medical curricula.

The importance of this stems from the limited awareness of biobanks among HCPs,^19–25 as demonstrated by previous studies, and this lack of knowledge about biobanks may influence HCPs' attitudes toward biobanking.^16,26–28 While the development of the biobank infrastructure and legislation in RoK is of key importance, the development of biobank education also therefore needs to be prioritized.^29–32 HCPs may play an active role in the recruitment of their patients as possible donors, especially since many biobanks in RoK are established as university or hospital repositories.^17,18,33

Any discussions between HCPs and their patients may help resolve many of the ethical, legal, and social concerns related to biomedical research and donation harbored by their patients. ¹⁷ The lack of biobank awareness among HCPs, however, may affect their perception of biobank research, their willingness to recruit new donors, and may hinder the collection of biosamples.^16,26–28 Since one of the most important requirements every research center engaged in the creation of a biobank has to meet is a highly qualified and specialized staff, ³⁰ this study seeks to assess the attitudes of medical students (MSs) in RoK toward biobanking research.

Materials and Methods

Results

Table 1 provides the details of the study participants (N = 678). Of the 725 respondents approached, 678 students participated by completing the survey, providing a response rate of 93.5%. Forty-seven students who refused to participate did so because they either lacked interest in the study or were unwilling to discuss their opinions regarding biobanking or their willingness to donate for research purposes. The sample consisted of 446 women (65.8%) and 232 men (34.2%). While 57.8% of students were in their first, second, or third years of study, 42.2% were in their fourth, fifth, or sixth years. The majority of students declared themselves as Muslim (74.2% Sunni and 3.4% Shiite), and 66.5% declared that religion bore an influence on their life decisions and choices, whereas 33.5% declared that it was irrelevant to them. Almost all respondents perceived their health either as very good or good (37.7% and 58.7%, respectively), and the majority (86.9%) had not been hospitalized in the previous 5 years. 79.6% declared no family history of genetic disease and 69.5% declared as being blood donors.

While less than one third of MSs were aware of biobanks (n = 212, 31.3%), the majority demonstrated a lack of biobank awareness (n = 466, 68.7%) (Table 2); declared awareness of biobanks was linked to MSs' attitudes toward research biobanks. Respondents who reported having heard about biobanks held more positive views toward them (44.8% vs. 21%), exhibited greater awareness of the existence of research biobanks in RoK (34% vs. 8.4%), and tended more frequently to support the idea of establishing a research biobank in the country (82% vs. 53.8%). Those who declared biobank awareness expressed a greater willingness to donate their biological material for research purposes (56.1% vs. 34.3%).

MSs' biobank awareness was also associated with the respondents' motivations to donate: students who were familiar with biobanks tended to have altruistic motivations, such as the desire to advance science and generate new knowledge (50.5% vs. 35.9%). In contrast, students unfamiliar with biobanks tended to indicate egoistic motives, such as wanting to discover their health status (22.3% vs. 14.2%) or receive medical treatment or medical services (11.4% vs. 5.6%). Finally, while biobank awareness was associated with MSs' preferences regarding the benefits expected from donating biospecimens for research purposes, it had no effect on their opinions on whether the donors should receive financial compensation for their donations.

While MSs' willingness to donate to various types of research and biobanks was mainly influenced by their awareness of biobanks, a family history of genetic disease, their experience of chronic disease, and declared religiousness, it was also affected by students' hospitalization history, whether they are a blood donor, and their year of study (Table 3). Students who had heard about biobanks, had family history of genetic disease, suffered from chronic disease, or declared themselves as religious were more willing to participate in most types of biobank research, including research into cancer, curable somatic diseases, incurable genetic diseases, and psychiatric disorders. They also showed a higher level of trust toward various biobanking institutions, both public and private biobanks, foreign and domestic biobanks, and even pharmaceutical, commercial, and insurance companies.

Students hospitalized within 5 years before the questionnaire who were blood donors or in the more advanced years of their studies tended to declare themselves willing to participate in biobank research more often.

Discussion

Although biobanking has existed in RoK for some years now, there remains a gap in the legal regulations of biobank in the country. In fact, the legal status of biological material donated for research purposes is entirely undetermined in RoK, and individuals who donate biospecimens to a biobank may lose ownership, a right that passes to the biobank. ¹⁰ Since biobanks collect HBM and associated personal data, many ethical, legal, and social dilemmas that may discourage possible donors and hinder biobank research arise.^36,37 Biobankers should therefore be aware that social perception of biobanks has practical consequences and may result in a number of conflicts between a variety of social actors involved in biobanking, including the research community, HCPs, biobankers, biobank investors and research sponsors, patients and donors, or social activists.

During the past few years, not only has Kazakhstan made the effort to invest in building research biobanks specializing in the collection of and storage of HBM for medical and research purposes,^6–10 but it has also adopted new rules on medical clinical trials and the organization of research biobanks.^11–13 This is important because compared with other countries in the CIS region, Kazakhstan hosts a significantly lower number of industry-sponsored clinical trials. ⁶ With its population of more than 19 million people, it has, at the same time, a huge potential for developing clinical trials and biomedical research, especially since Kazakhstan is located between Europe and Central Asia and has a beneficial competitive landscape for clinical research.

What is equally important is that, while examining the social dimensions of biobanking, most research focuses on biobank awareness in the general population. Although social attitudes toward biobanks have been studied in several Asian countries, including Russia^19,38 and China,^39,40 research also suggests that there is an urgent need for biobank education among (future) HCPs, including physicians, nurses, and pathologists.^29,30 To date, however, there exist no studies on the awareness of MSs in RoK. While biobanks depend on a large number of high-quality samples, they also require qualified practitioners. It is therefore crucial to raise the awareness of current and future HCPs about biobanking and educate them on the key concepts of biomedical research, so that (future) HCPs, and doctors in particular, might engage in promoting donation for biobank research.^16–18 On the contrary, HCPs' lack of knowledge or support for biobank research may hinder the organization and development of biobank infrastructure and the collection of biospecimens for biomedical research.

This study confirms that since MSs in Kazakhstan possess limited awareness regarding biobanking, there is a need for biobank education in the country, especially since many MSs enrolled in this study had either not heard about research biobanks or felt that they were unhelpful or irrelevant about research biobanks. In the future, a lack of knowledge or trust toward biobanking among health care specialists may therefore jeopardize the recruitment of possible donors. This should come as no surprise, however, since previous studies have demonstrated that the awareness of MSs on biobanking in other countries is also relatively low. Only one fifth of Russian students in St. Petersburg, for example, had heard about the existence of biobanks.^19,20

Similarly, only 46% of Egyptian and 52.9% of Jordanian MSs had previously heard about biobanks.^21,22 Another study showed that less than one third (27%) of Saudi MSs were familiar with the term biobank, and 41% did not know the purpose of biobank research. ²³ On the contrary, although up to 72% of Polish MSs had heard about DNA biobanks and over a half expressed enthusiasm toward biobanking, many still had very little knowledge regarding research biobanks, and less than one third was aware of the existence of biobanks in Poland. ²⁴ Similarly, even though the majority of Italian medical and nursing students had heard the term biobank (83.7%), more than a half did not know whether there were any biobanking institutions in Italy and were unable to differentiate between research and forensic biobanks. ²⁵

Another important finding is that, as MSs in Kazakhstan clearly lack knowledge on research biobanks, their ignorance in this field affects both their support for the organization of research biobanks in the country and their willingness actively to participate in biobanking research. This is surprising since, although MSs' awareness regarding biobanks in many Arab countries was also unsatisfactory, the majority of Jordanian, Saudi, and Egyptian students supported the collection of HBM for research purposes and were willing to donate their biospecimens for biomedical research (96.4%, 89%, and 47.2%, respectively).^21–23 Similarly, apart from their lack of awareness of biobanks, 73.9% of Russian students declared a readiness to become biobank donors.^19,20

This study also confirms the results from other countries, showing that the majority of MSs who declare a willingness to donate are driven by altruism and believe that it would benefit science and society. 74.7% of Egyptian students, for example, were motivated by the wish to advance medical research, benefiting society and future generations. ²¹ Forty-four percent of Saudi students believed that it would help advance medical research. ²³ Our results also show that MSs' motivations behind becoming a biobank donor were also affected by reciprocity and expectations of personal benefit, in the form of receiving clinical tests or physical examinations, receiving feedback with research results, or financial remuneration. Similarly, 45.4% of MSs in Egypt ²¹ and 25% in Saudi Arabia ²³ also wanted to be notified about abnormal results, while others expected medical care.

Finally, this study confirms that apart from altruism and reciprocity, there are some key factors that influence future HCPs' perception of research biobanks and may affect their support for biobank research and their willingness to become donors: a family history of genetic disease, experience of chronic disease, religiousness, a history of hospitalization, status as a blood donor, and year of study. Similarly, while many university students in Jordan and Saudi Arabia declared that religious views on donation were important for such a decision,^22,23 Egyptian students with a history of blood donation declared a willingness to donate biospecimens. ²¹ It was also shown that MSs' general health status and past experience with tissue-testing or donation had a positive impact on students' willingness to participate in biobanking.

Conclusions

This study shows that research biobanks are complex phenomena and cannot be considered solely as repositories of HBM. On the contrary, apart from a significant medical and techno-scientific dimension, every biobank has to consider the social aspects of biobanking. Apart from developing national biobanking standards and establishing interactions with national and local governments, public organizations, researchers, and specialists on a national and international level, it is therefore equally important to develop educational programs for both students of a range of biomedical disciplines and health care specialists who may be faced with the need to interact with biobanks in their professional activities.^29–33 Since this study shows that the awareness of future HCPs in Kazakhstan on research biobanks is low and many HCPs show moderate support for biobanking and sample donation, it seems that the existing curricula regarding biobanking are insufficient and a number of elements of biobanking should be integrated in educational curricula.

Patient Consent for Publication

Not applicable.

Ethics Approval

This study was performed in line with the principles of the Declaration of Helsinki. In accordance with Kazakh law and Good Clinical Practice on research involving human subjects, this study did not require revision by an ethics committee. All participants provided informed consent to participate.

Consent for Publication

Not applicable.

Data Availability Statement

The data sets generated during the study are available from the corresponding author on reasonable request.