Knowledge, Attitude, and Opinions of Egyptian Medical Students Toward Biobanking Issues

Despite the efforts to foster biomedical research in developing countries, there are still difficulties being faced; one of which is the difficulty of having quality biospecimens for research. Biobanks/biorepositories play an important role in providing high-quality biospecimens and data for research. In Egypt, there have been recent efforts to establish several research biorepositories.^[1,2] Public trust is crucial for the success and sustainability of these biobanks.^[3] Trust is also believed to be an important predictor of willingness to contribute to the work of research biobanks ^[4] There is increased interest in investigating the different factors affecting the attitudes of different stakeholders toward biobanks. Previous reports investigated the different aspects affecting parents' and patients' willingness to donate their samples for research in Egypt.^[5,6]

Biobank stakeholders include researchers, physicians, pathologists, and research associates. These stakeholders need to be fully engaged to enhance the recruitment process and reassure patients of the benefits and/or risks involved in their participation in a clinical trial or research biobanking.^[7] Medical undergraduates are future clinicians and scientific researchers. Undergraduate research has recently become an important requirement for graduation, with a resultant greater number of medical students taking up research.^[8] There is now a necessity for those future clinicians and investigators to be trained in biobanking and basic research as well as the ethical considerations related to both because some of the students may pursue careers as clinician scientists.

Before our study, we found no available data regarding the knowledge of and perceptions regarding biobanking among Egyptian healthcare providers. Thus, we conducted the current survey to assess the level of knowledge, and attitudes of undergraduate medical students regarding the importance of collecting samples for research and the ethical considerations involved in this process. We also attempted to assess their attitudes toward biobanking research.

The current work was a cross-sectional study. Medical students from faculties of medicine of three universities in different regions of Egypt were recruited. The three universities were Cairo University (in the capital/center), Alexandria University (in the north of Egypt), and Assiut University (in the south of Egypt). The three targeted universities work under the auspices of the Egyptian Supreme Council of Universities with the same rules, regulations, and educational standards. The study was approved by ethical committees at the three universities, and all the study procedures were carried out in line with the ethical requirements of the Declaration of Helsinki.

The current study targeted medical students in their fourth, fifth, and sixth years of studies. In Egyptian medical schools, the curricula of the first three years are usually confined to the basic sciences, and students start their clinical rounds beginning from the fourth year. Accordingly, the targeted students are assumed to have an accepted level of accumulated knowledge and can represent the community of future physicians.

The sample size was calculated using the Epi Info program, version 7, as follows. The expected percentage of students who were aware of the term “biobank” was 27% as reported by Merdad et al.^[9] Using a 95% confidence interval, with precision of 5% and a design effect of 1.0, the minimal required sample size was estimated at 303 participants. Furthermore, after a further 20% was added to compensate for potential nonresponse, the total sample size was adjusted to 364 participants. The sample size was proportionally allocated to each university according to their corresponding number of enrolled students; the share of Cairo University was nearly double that of Alexandria and Assiut Universities.

The data were collected using an anonymous, structured, self-administrated questionnaire in the English language. The questionnaire was available online as a Google form to facilitate data collection and to minimize potential errors during data entry. The questionnaire design was based on surveys previously used in published works.^[9–11] The questionnaire started with a brief introduction to biobanks, their benefits and importance to research, and ethical issues associated with biobanking. Several online resources were provided for further knowledge.

The questionnaire included three sections, composed of predominately closed-ended questions. The first section elicited information about the background characteristics of the participants, including demographic, health-related, and biobanking-related variables. The second section included five items that evaluated basic knowledge of biobanking. The third section assessed the students' attitudes toward biobanking through 16 survey items sorted under five response categories, as described in Supplemental Table S1, available online. Participants were asked to rate their agreement level with the survey items using a 5-point Likert scale: 5 = strongly agree, 4 = agree, 3 = unsure, 2 = disagree, and 1 = strongly disagree. A mean score was generated by summing up the responses of the Likert scale and dividing by the number of items in the overall biobanking attitude score and, for each response category, allowing for a mean score ranging from 1 to 5 where higher scores indicate more positive attitudes.

The preliminary questionnaire was tested on 30 students from Cairo University to assess for comprehension, clarity, and time needed to answer the questions. Accordingly, some questions were modified or omitted from the questionnaire before it was set in its final form.

Coordinators from each university were trained to communicate the idea of the survey. Participants were personally approached through the study coordinators. The participants were invited to fill in the study questionnaire online via the Google forms link. The principal investigator's contact number and e-mail address were provided in case of any inquiries. Participants were asked to add their e-mails if they were interested in attending any future events that would address biobanking. They were later sent an e-mail inviting them to a local conference that included a session about biobanking.

Precoded data were entered and statistically analyzed using the Statistical Package for Social Sciences (SPSS) software, version 21. Qualitative variables were expressed as numbers and percentages. Quantitative variables were presented as mean and standard deviation (SD). Any correlations between the different variables (namely demographic, health-related, biobanking-related, and knowledge factors) and the overall biobanking attitude mean score and the different response categories mean scores were tested using the independent t-test and analysis of variance (ANOVA) test; p values of less than or equal to 0.05 were considered statistically significant. The internal consistency and reliability of the survey items were assessed using the Cronbach alpha, where a value of greater than or equal to 0.7 indicated a satisfying degree of reliability.

A total of 315 of 364 questionnaires were completed and submitted for a response rate of 86.5%. The mean age of the respondents was 22 ± 1.1 years, with a range of 20–26 years, and nearly equal sex distribution. Approximately half of the respondents (48.6%) were Cairo University medical students, and the second half was from either Alexandria or Assiut Universities (24.4 and 27%, respectively). Other demographic, health-related, and biobanking-related variables of the respondents are summarized in Table 1.

More than half the students had heard of the terms biobanking or biospecimens before (58.7 and 55.2%, respectively). The students' responses to other basic knowledge questions about biobanking are presented in Table 2.

Table 3 shows the biobanking attitude survey items divided into five response categories: willingness, impact, ethics, sharing, and access, using a 5-point Likert scale. With regard to the overall attitudes toward biobanking in Egypt, more than three-quarters (76.9%) of the students expressed positive attitudes toward biobanking (strongly agree or agree), with a mean biobanking attitude score among the study respondents of 4 ± 0.4 of 5 points. In terms of the different response categories, impact occupied the top category (91.3%), followed by access (90.4%), and then ethical considerations (89.4%). On the other hand, only 57.7% were willing to provide personal samples or samples from their own family members for biobanking research, and fewer than half the respondents (46.8%) accepted sharing samples or data with different stakeholders.

The potential associations between the different variables with the overall biobanking attitude score and the different response categories are summarized in Supplemental Tables S2 and S3. Factors that were significantly associated with willingness included history of blood and organ donation (p = 0.05 and 0.03, respectively), previous attendance at a scientific activity that addressed biobanking (p = 0.01), and the assumption that there was a law that governed biobanking in Egypt (p = 0.01).

The reliability of the survey items was assessed by using the Cronbach alpha values (Table 3). The overall survey items in addition to four of five response categories recorded Cronbach alpha values ≥0.7, indicating good reliability and internal consistency between the single survey items. Only the response category “access” yielded a low Cronbach alpha value of 0.4, which is considered acceptable regarding the number of items included in this category. Furthermore, the overall Cronbach alpha value was 0.7. Accordingly, the results were normally interpreted as all the other categories.

The biobanking field is growing worldwide. Both Time and Forbes magazines agreed that biobanking is changing our world, due to their roles in modern research.^[12,13] The development of personalized medicine tools and techniques, and magnitude of large-scale genomic projects caused a surge in the value of biospecimens, obligating biobanks to seek high-quality specimens with annotated clinical data to support desired biomedical research projects.^[14,15] With the establishment of several biobanks over the past few years, the field is also growing in the Arab region/Middle East.^[1,2,16] The presence of these biobanks should encourage genetic studies that would decipher the etiology of numerous diseases in the region.^[16] However, the establishment of such biobanks is associated with several controversial ethical, social, and legal issues.^[16] These issues include, among others, return of research results, benefit sharing, and commercialization issues.

Social sustainability achieved through maintaining good relationships with stakeholders is essential for the success and continuity of biobanking activities.^[3] Our project aimed at evaluating degrees of knowledge and attitudes of a segment of stakeholders toward biobanking activities. In a previous work^[6], attitudes among Egyptian patients were evaluated. In the current work, we targeted undergraduate medical students. This group of stakeholders showed interest in medical research and new ideas in their field.^[2] Moreover, to complete their specialization degrees after graduation, most of them would have to engage in postgraduate research as part of the requirements for master's degrees. That is why we believed that this group of healthcare students represented an important segment of future biobank customers, and thus, were among the most important stakeholders. We needed to assess how they perceived the idea and level of their knowledge about the value of biospecimens and donating samples for research.

To avoid confusion that may arise between the term “biobank” and terms such as “stem cell banks” and “cornea banks,” a small paragraph about the differences between them was provided in the introduction section of the questionnaire. The term “biobanking” was introduced in Egypt a few years ago, which makes it relatively novel to Egyptian medical students. The novelty of the concept was evident in this study, where 58.7% and 55.2% had heard of the terms “biobank” and “biospecimens,” respectively (Table 2). In a previous experience where we designed a specific biobanking course for undergraduate students of life sciences, only 49% stated that they had heard of the term “biobanking” before.^[2] Although the percentage is not high, it was comparatively much higher than the percentage among patients who had participated in our previous study.^[6] Our results are higher than the study by Merdad et al^[9] in Saudi Arabia, where they found that only 27% of healthcare students knew about the biobank term. Although our students' level of knowledge was higher than the aforementioned study, it was lower than other countries. A similar study conducted in Italy found that 83.7% of university students knew the correct definition of a biobank and the aim of banking samples for research.^[17] The difference may be attributed to the difference in the maturity of the biobanking field in different regions in the world. In the Arab region, the concept is still new, and the limited knowledge about biobanking and biospecimen terms in this region was perhaps associated with limited knowledge about the current situation of biobanking; fewer than 40% had prior knowledge that there were several biobanks in Egypt. On the other hand, more than half the students (53.7%) thought that there was a law that governed biobanking in Egypt, which was not true at the time the survey was conducted.

Approximately 35% of participants had prior experience with medical research. They chose to participate in such research with the assumption that such participation in the early stages of their medical education would increase the likelihood of successfully pursuing a career in research in the future. This proves our belief that current Egyptian medical students represent potential future biobank customers. On the other hand, as few as 12.1% of participants mentioned that they had attended scientific activities related to biobanking, which could be attributed to limited awareness of educational resources addressing biobanking available to the Egyptian academic community. Interestingly, as many as 96% showed interest in knowing more about biobanks, and approximately 84% were willing to attend educational sessions or courses about it. This is also in line with other studies that have revealed that undergraduate medical students were intrigued by biobanking, were interested in learning more about it, and were willing to spread the word about the importance of participating in biobanking research.^[2,18,19] Interestingly, we conducted two courses regarding the general concepts of biobanking for undergraduate life sciences students. The results of the pretest and posttest in these courses noted improvement in the learners' knowledge, specifically the definition of biobanks and applications of quality in the field.^[2]

With regard to overall attitudes toward biobanking in Egypt, 76.9% of the students expressed positive attitudes toward biobanking, and 91.3% understood the impact of biobanks in the development of novel treatments and diagnostic methods, and on the quality biomedical research, with no significant differences between the students in different years. Many of them (70.1%) were willing to participate in establishing biobanks in their institutions. These results concur with the study by Wyld et al,^[20] which inferred that medical doctors in Australia were enthusiastic about the role of biobanks in medical research. This positive attitude toward the benefits of biobanking is in line with the results of our previous study on patients' attitudes, which acknowledged such benefits and the importance of biobanks in research.^[6]

Surprisingly, only 57.7% of participants in this study were willing to donate their own samples or their family members' samples for biobanking research. This is in contrast to the patients' attitude in our previous study, in which 85% of participants were willing to donate their samples to biobanks.^[6] This result is also different from the results by Merdad et al,^[9] who reported that 89% of senior healthcare students in Saudi Arabia were willing to donate biospecimens to biobanks. This reflects differences between countries and populations, and thus reflects the importance of repeating similar research in different countries before making any general assumptions.^[21]

Several explanations may be provided for this attitude toward donating personal/family samples. We think that some medical students believed that they it was appropriate for them, as future clinicians, to be involved in research as investigators, but not as subjects. Another explanation is related to fears about the possible misuse of samples, or that research results may result in stigma.^[22] This could also explain why positive attitudes toward biobanking were significantly higher among participants with negative family history of inherited disease (p = 0.02) (Supplemental Table S2). We and others have reported fears and concerns regarding participation in genetic research among patients.^[6,22] Patients with some familial and genetic disorders, such as Huntington disease may suffer from discrimination and stigma in their lives and at the workplace.^[23] Participants who have family members suffering from such diseases may have concerns that participating in genetic research would reveal new bad news to them. We think that these fears outweighed the benefits of participation in research in our participants. These concerns should be explored in detail in future studies and educational programs should be developed to deal with these concerns.

Interestingly, willingness to donate biospecimens was significantly associated with histories of blood and organ donation (p = 0.05 and 0.03, respectively) (Supplemental Table S2), with previous attendance at a scientific activity that addressed biobanking (p = 0.01), and the assumption that there was a law that governed biobanking in Egypt (p = 0.01) (Supplemental Table S3). This positive attitude of blood donors toward the participation in medical research has also been reported in other studies.^[4] Collectively, these factors refer to the importance of education and trust in motivating stakeholders to participate in biobanking activities.

Fewer than half of the respondents accepted sharing samples or data with different stakeholders; namely, pharmaceutical companies, insurance companies, government authorities, and legal authorities. This result is quite similar to the results of our prior patient-attitudes study with regard to sharing information with pharmaceutical companies.^[6] This reflects a nationwide concern about the commercialization of samples and data not only among patients, but among medical students as well. Meanwhile, in the aforementioned study, patients were accepting governmental access to samples and data when necessary,^[6] and another study showed that the public thinks that the government should control the transport of and sharing of samples with entities abroad.^[24] This was not the case with medical students, and the difference could be attributed to the higher level of education these students have, in comparison with the target group in our previous study, which included approximately 25% illiterate persons. We think that as the educational level increases, especially in members of the clinical community, less dependence on the government and more freedom of research is required. Biobanks should have transparent policies for access and sharing, and benefit sharing according to the laws and regulations. We think that these policies can alleviate the concerns and fears of both participants and students.

Approximately 96.2% of participants voiced concerns regarding the protection and security of patients' information and samples. A study by Oushy et al^[25] reported that a large proportion of the biomedical researchers surveyed agreed that sample quantities and types should be shared via a virtual biorepository. Nonetheless, some disagreed with sharing data on donor ethnicity for fear of breach of donor confidentiality. They also stated that the researchers' perceived barriers to sharing data were centered on legal and ethical issues.^[25]

Informed consent is an integral part of any research involving human subjects. Usually, the nature of future research that would use samples collected for biobanks is not known at the time of sample collection. Therefore, participants are usually asked to sign a broad consent for use in any future research project.^[26] A broad consent is not, however, a blanket consent and thus should include some information about the potential use of samples. Our participants highlighted the importance of this point, where approximately 91 and 85%, respectively, believed that sample donors should know in detail how their samples would be used and if they would be transported aboard. We did not, however, ask them about their preferences for different consent models that can be used in the context of biobanking research. This should be tackled in future research.

Return of research and incidental finding is another big issue that raises debate within the research community.^[27,28] This debate includes issues such as what type of data will be returned, and how these findings might affect the future life of participants if, for example, the data indicated susceptibility to a future disease.^[29] Most participants (85.7%) believed that sample donors should be informed of results of research on their samples. These findings are similar to our results in the patients' survey, in which most of participants believed that return of research results was a donor's right.^[6] This is not an easy task, especially in the era of whole genome sequencing, in which data may not be clearly understood by participants, and sometimes no health action can be taken.^[30] Laws and ethical guidelines are needed to regulate the return of individual genomic results, especially in developing countries.^[6] Once developed, researchers and clinicians should be trained on what and how to communicate research results with participants, especially if these results include sensitive or complex genetic information.

Our study has some limitations. First, this was a quantitative study, which used only closed-ended questions. This did not allow participants to explain their choices, which could add more insights about these choices. Second, the distribution of the survey through Google forms allowed only students who have Internet access to fill in the survey. This could have resulted in some degree of sampling bias. Finally, we did not explore the responses to different consent models of biospecimens, which would have given us insight on how medical students perceive these models and their preferences toward these consent models.

We recommend incorporating research and biobanking courses into the healthcare and biomedical students' curricula to ensure awareness of these subjects. Since the future role of these undergraduates would probably be that of users of a biobank, rather than working in a biobank, these courses should be tailored accordingly. The topics should cover issues related to clinical and technical aspects, as well as ethical, legal, and social aspects of research and biobanking. Topics could include, for example, specimen collection and handling, quality management, and information management. It would be interesting if biobank managers and researchers participated in the development of these curricula and engaged students in practical training, activities, and research related to these topics. Nevertheless, the mode of the delivery of these courses would greatly affect the level of the students' engagement and overall benefit of these courses. Delivery could be in the form of intensive courses with a limited number of students and which includes practical demonstrations and tutorial-based discussions.^[31] Another option would be a Web-based course that uses visual aids such as animated case studies and real-time discussion boards, both of which engage learners, elucidate difficult biobank concepts, and highlight key concerns.³²  If this education happens, medical students may turn into “loyal customers” in the future, informing their patients about biobanks and encouraging them to participate, and using biobank products and services. This loyalty will be seen in the growth and development of biobanking, as well as in laboratory and clinical research in Egypt. Furthermore, laws governing the legal and ethical issues related to biobanks should be passed to assure stakeholders of the privacy and security of data and samples.

In summary, we found that although many students in our survey had relatively limited knowledge of biobanking, they had generally positive attitudes toward the concept and were willing to access more information about it. However, this generally positive attitude did not extend to a similar willingness to donate biospecimens themselves or encourage donations from their families, especially in those with a family history of inherited diseases. Moreover, participants expressed concerns about data protection and sample or data sharing. Taking all of these factors into account, biobanking education should be designed and made available to undergraduate and graduate students to fill any knowledge gaps, especially in healthcare students who will be future sample recruiters and physician scientists.

Supplemental data are available online with the article.