Our study, involving several LMICs in the Arab region of the Middle East, demonstrated that only a minority of the public (less than 30%) were aware of the term “biobanks” and only a small proportion of our participants (less than 20%) were willing to participate in biobank research.
Our participants’ level of awareness regarding biobank research compares with other studies performed in the Middle East. For example, in a study performed in Jordan, only approximately 26% of a representative sample of the population knew what the term “biospecimen” represented . These results are confirmed by recent studies from Egypt  Morocco , and Jordan , in which the rates of awareness were 53.7%, 32.4%, and 28.5%; respectively.
The low awareness of the public regarding biobanks that we observed was accompanied by a low percentage of the public’s willingness to participate in biobank research. This result contrasts with recent studies from Egypt, Jordan, and Morocco, which revealed a higher willingness of the public to participate in biobank research that ranged between 65 and 85% [22,23,24]. This finding of low awareness coupled with high willingness from the other studies compares with other studies investigating the views of the public toward biobanks. For example, Mezinska and colleagues surveyed the Latvia public and showed that despite only a quarter of the participants being aware of biobanks, almost a half were willing to donate blood samples to a biobank .
We are left with the task to explain the divergent results between our study showing low awareness and low willingness with the other studies showing low awareness yet a high willingness to donate biospecimens. One explanation might ensue from the difference in methodologies used to recruit and obtain survey responses in the different studies. Specifically, our study was conducted mainly online, whereas the other studies we mentioned above used face-to-face interviews, which might have led to an “interviewer effect” leading to a social desirability bias in face-to-face methodologies [30, 31]. By way of explanation, face-to-face interviews could cause desirability or acquiescence bias since participants would give an answer that was to satisfy the interviewer. This bias would not occur with surveys conducted online suggesting that online responses might reflect better the true intentions of the participants. It is worth mentioning that although the questionnaires were distributed in-person in Sudan, face-to-face interviews were avoided.
The one study from Jordan that also used an online methodology stands in contrasts to the study herein insofar that despite a low awareness, the Jordan investigators showed a high willingness of the public to donate a biospecimen (more than 85%). Two factors might explain the differences between the results between the Jordan study and ours. First, almost 50% of the participants in the Jordan study revealed prior participation in research, which contrasts with only 16% in our study. More importantly, greater than 75% of the participants from Jordan agreed that they trust research and researchers, which contrasts with the less than 20% of our participants who revealed trust in biobank managers. Furthermore, we showed that most of our participants harbored concerns about doctors or researchers with protecting the privacy of their information.
The significance of trust regarding willingness to donate biospecimens and associated health data corroborates the importance of trust regarding biobank research shown in other studies. For example, Pawlikowski and colleagues explored the associations between the willingness to donate samples to biobanks and selected psychological variables. Of the variables studied, one included trust in doctors and scientists. . Similarly, Iott and colleagues showed that patients’ trust in physicians is associated with their information-sharing concerns or behaviors . Dive and colleagues reported the results of the Australian public attitudes toward the networking and globalization of biobanks . Using quantitative and qualitative methods, they explored factors that may contribute to or threaten trust. Their results indicated a generally high level of trust in biobanks and medical research more broadly, but key factors that can reduce the perceived trustworthiness of biobanks involved issues related to commercialization and participation in global networking. They recommended that robust ethical oversight and governance standards can promote trust in global biobanking.
Importantly, our results parallel those of Gaskell et al. who showed that countries such as Austria and Greece were characterized by the lowest levels of willingness to participate and the lowest level of trust in their government [35, 36]. In focus groups, “Greek participants explained that they don’t trust their country’s political system and therefore worry that the data would fall into the wrong hands” . Individuals from the focus groups expressed the most concern about privacy and about what their genetic data might be used for. Greece also had the highest number of people selecting ‘narrow consent’.
Other studies have found that trust towards researchers depended on the nature of the entity where they were employed. For example, concerns towards researchers working for commercial and private (e.g., for-profit) have been demonstrated in many studies [12, 34, 37, 38]. However, the reluctance with data sharing with academic researchers has been variable. A high level of mistrust regarding academic researchers was shown in one study from the US . In contrast, a high level of trust was reported in an Australian study  and in a study conducted in the US .
Trust and privacy are intimately related as one could infer that trust plays a role in the willingness of individuals to share their private information. Previously, Abdelhamid and colleagues demonstrated that privacy concerns had the most influence on individuals' intentions to share their “protected health information” electronically with health care providers . Similarly, most of our respondents indicated that they could not trust their doctors or researchers to protect the privacy of their information. Finally, Makhlour and colleagues showed in their study from Jordan that concerns with one’s privacy and confidentiality had weak, but statistically significant negative correlation with a willingness to donate samples for biobank research..
The importance of trust and privacy protection probably played a role in our respondents’ choices for informed consent. A majority selected either the option of re-consenting for every new secondary biospecimen research (study-specific consent) or a tiered consent model with coded samples (categorical consent). Both types of consent offer the most degree of autonomy and a high level of control compared with broad consent. Such choices reflecting the desire for more control over choices infer a lack of trustworthiness with the other options that offer less control.
Studies conducted in the Arab region of the Middle East (e.g., Jordan and Morocco) showed a preference for broad consent [23, 43, 44]. However, in a questionnaire study involving 600 Egyptians, many participants favored a tiered consent model or a preference for recontact . Other studies exploring the preferred type of consent have shown a lack of consensus [41, 45], while others have shown a preference for broad consent [34, 46]. In a US study involving an exploratory mixed methods design, Simon and colleagues showed that broad consent (i.e., research-unspecific consent) was preferred over categorical and study-specific consent models for purposes of approving future research use . An overview of the studies that assessed the public preference for consent forms for biobanks suggests no consensus even within the same population .
To further explain our results regarding the low rate of willingness, we investigated the relationship between several of the constructs and willingness to donate biospecimens. We showed that “perceptions” about biobanks had a negative association with a willingness to participate in research. Specifically, individuals who had more accurate perceptions of biobanks were less willing to participate in biobank research. These findings regarding the impact of the degree of accurate perceptions on “willingness” could be analogous to results regarding educational levels. Specifically, our study showed that a lower educational level was a predictor of willingness to participate in biobanks. Additionally, we showed that a lower educational level was associated with “attitudes toward biobank research” and “attitudes toward trust and privacy”. In contrast, while individuals living in rural areas had higher scores on “attitudes toward trust and privacy” compared with individuals in urban areas, individuals from rural areas did not have higher scores on “attitudes toward biobank research” and a “willingness to donate” compared with their urban counterparts. Our results with “lower educational levels” find support in other studies. For example, Labib et al.  and Nilstun and Hermerén  showed that individuals with "higher levels of education have restrictive attitudes towards donating samples to biobanks. The downstream negative effects of education on biobank participation is similar to the observation that increasing knowledge of genetic testing does not necessarily increase the enthusiasm for genetic testing, rather there is expressed skepticism [50, 51]. In contrast, Mezinska and colleagues reported in Latvia that higher education levels were associated with a higher degree of sample donation.
Although we showed that the construct “perceptions” was negatively correlated with “attitudes toward biobank research”, our study is noteworthy as correlation analysis revealed that “attitudes toward biobank research” had a significant positive correlation with a “willingness to donate”. Additionally, for each of the countries in our study, “attitudes toward biobank research” also had a significant positive correlation with a “willingness to donate”. The significance of attitudes and willingness to donate relies on the work of social scientists who explored the relationship between attitudes and behavior. Specifically, Ajzen and Fishbein used two components to predict intentions to explain behavior. One component measures the person's perceptions of what other people expect him or her to do (i.e., social norms) and the other component involved a motivation to comply with these expectations .
We also investigated “aspects” that affect willingness to donate biospecimens in our study. Of the “aspects” that affect willingness to donate biospecimens that we explored in this study, we found that sharing biospecimens and data with researchers from other countries was “important” with almost 50% of our respondents. This result is consistent with our finding that approximately 60% of our participants “disagreed” with the attitude that it is acceptable for samples to be shared with researchers at other institutions. The essence of biobanks is sharing of biospecimens and related information with other researchers. The alleged concern we discovered with data sharing in the international context corroborates the finding of Abou-Zeid and colleagues who showed in a survey conducted in 2010 that Egyptians’ reluctance to share biospecimens and data with Western countries was higher than with researchers in Arab countries . Similarly, in an international study, Middleton and colleagues showed that Egyptians were among the populations that resisted data sharing . Ahram and colleagues showed that among Jordanians there has been an apparent change of opinion regarding data sharing between 2010 and 2020. Specifically, approximately 60% in 2010 thought that the involvement of non-Jordanian researchers with their biospecimens and health data would not influence their decision to participate in biobank research as only 15% thought it would have a negative influence . However, in a follow-up study in 2020, over 80% of survey respondents thought that the possibility of transferring biospecimens outside the country would negatively affect their approval to give open consent for biomedical research .
Our findings contrast with studies from other regions demonstrating higher rates of approval of data sharing. For example, in a study exploring the public attitudes in Latvia, approximately 70% of the participants would favor sharing of biobank samples among countries in the European Union . This was also evident in a study conducted in South Africa in which more than 70% of respondents agreed to share their samples with institutions in foreign countries . Other studies have shown that the public appreciates the importance of sharing and its role in enhancing scientific discoveries and improving healthcare [37, 55, 56]. Although the value of data sharing may appear to be a global trend, as recently reported by the multi-national study of Middleton et al. , reservations seem to exist in some populations. Openness to data sharing was not found among the Swiss public, where only 11.7% of survey respondents were willing to donate their data freely .
We can offer several determinants that might explain the reluctance of the public to data-sharing. These include concerns with informational privacy and trust. For example, Shabani and colleagues analyzed 15 empirical studies investigating the attitudes of research participants and the public towards genomic data sharing . Their results revealed a wide variety of interrelated concerns including the personal perceptions of controllability and sensitivity of data that they share with others. Additionally, Kalkman and colleagues performed a narrative review of the empirical evidence addressing patients' and public attitudes towards the use of health data for research purposes and showed that support for data sharing is conditioned on the value of the research, risk minimization, protection of privacy, data security, transparency, accountability and trust .
We found certain aspects to be of little importance to the Arab public, one of which included returning individual research results. In one study, many Jordanians were not in favor of receiving individual research results regardless of whether the results revealed a treatable or untreatable disease . These data showing a lack of interest in return of individual research results contrast with previous studies showing that Egyptians and Jordanians desired such information [21, 22]. A further qualitative exploratory study is warranted to further determine the public beliefs and attitudes regarding individual research results.
Finally, our study showed several differences between the four countries regarding several of the investigated constructs. For example, Morocco had significantly higher scores regarding “attitudes toward trust and privacy” compared with the other countries, whereas Egypt demonstrated significantly higher scores on “attitudes toward biobank research” compared with Jordan. These results suggest that caution should be applied in generalizing results from one country in the Middle East to the other countries in the region. Nevertheless, despite the differences in the constructs shown among the countries in our study, we did not find any country-dependent significant differences in the “willingness to participate in biobank research.”