Our study involving several LMICs in the Middle East demonstrated that the public awareness of biobanks is low and that only a small proportion of our participants were willing to participate in biobank research. Several demographic variables were associated with a willingness to donate. These included younger age, having children, previous participation in research, locality (rural greater than urban area), and level of education (less than a university degree compared with having a university degree or higher). These results compare with Mezinska and colleagues who also reported that younger people in Latvia are more willing to donate biospecimens, but they also showed, in contrast with our study, that higher education levels were associated with a higher degree of donations . Surveys of the public from Jordan and Morocco also found that younger age is correlated with a willingness to participate in research [12, 26]. In a recent study of university students in Jordan, willingness to participate in biobanks was 90% for genetic and biobanking research, which is much higher than the results obtained in this study, reaching .
We also showed a relationship between the willingness to donate biospecimens to a biobank and several of the investigated constructs. These constructs included the importance of certain aspects of biobank research that affect willingness to donate, attitudes toward biobanks, and attitudes toward trust and privacy. Perceptions about biobanks, however, had a negative association with a willingness to participate in research. In other words, individuals who had an enhanced perception of biobanks were less willing to participate in biobank research.
Our results show a low level of willingness to participate in biobank research compares with other studies  but is significantly lower than previous studies conducted in Egypt, Jordan, and Morocco, which were 85.3, 84%/65%, and 80.7%; respectively [12, 23, 26, 31]. Higher results for these studies compared with the present study can be explained by differences in demographics regarding age, level of education, and locality (i.e., rural vs. urban).
The essence of biobanks is sharing of biospecimens and related information with other researchers. It is, therefore, crucial to determine which features of biobank research activities adversely affect individuals’ willingness to donate. Of the aspects we explored in this study, we found that sharing biospecimens and data with researchers from other countries was “not important” to only 26.6% 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 alleged concern with sharing data 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 more 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 . Furthermore, Jordanian university students were less eager to participate in a biobank managed by a non-Arab entity compared with the government or an Arab institution (but more than a private sector) . 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 biobanking 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 an open consent for biomedical research .
In contrast, studies from other regions demonstrate 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 EU countries . 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 [35–37]. This value of data sharing appears to be a global trend, as recently reported by the multi-national study of Middleton et al. . In contrast, 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 .
Several factors might explain the reluctance to data sharing. For example, Shabani and colleagues analyzed 15 empirical studies investigating the attitudes of research participants and the public towards genomic data sharing through public databases . Their results revealed a wide variety of interrelated concerns with data sharing, including the personal perceptions of controllability and sensitivity of data, potential risks, and benefits of data sharing at individual and social levels, and also governance considerations.
Pawlikowski and colleagues explored the associations between the willingness to donate samples to biobanks and selected psychological variables. These variables included trust in doctors and scientists, a tendency towards risk, certain personality traits, a sense of and searching for meaning in life, and preferred values such as work, helping others, travels, personal development, tradition, and knowledge .
Kalkman and colleagues performed a narrative review of the empirical evidence addressing patients' and public views and attitudes towards the use of health data for research purposes . They showed that support for data sharing for health research is conditioned on the value of the research, risk minimization, protection of privacy, data security, transparency, trust, and accountability.
Trust appears to be a common factor in all of these studies. Our study corroborates the importance of trust regarding biobank research. Specifically, we showed that a majority of our participants did not trust doctors or scientists to protect the privacy of their information, and many did not trust individuals in charge of biobanks. 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.
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 [14, 37, 43–45]. 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 trust plays a role in the willingness of individuals to share their private information. We showed that a majority of our participants did not trust doctors or scientists to protect the privacy of their information. For example, Abdelhamid and colleagues also demonstrated that privacy concerns had the most influence on individuals' intentions to share their “protected health information” electronically with health care providers .
Our result contrasts with other studies showing that health care providers are the most trustworthy individuals among the public [37, 44, 45]. Middleton et al. found similar findings whereby physicians received the highest level of trust . In contrast to our study, Middleton and colleagues also revealed that Egyptians had the highest level of trust in their physicians.
A reluctance to data sharing could also be related to potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes . These results are contrary to what has been reported in the US and Australia, where people were more comfortable with sharing their biospecimens and data with local researchers [43, 46]. The situation is also different among Canadians who were more welcoming to share their biospecimens and information with international researchers .
The importance of trust and privacy protection probably played a role in our respondents’ choices for informed consent. Most selected either a biobank with the option of re-consenting 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. In general, other studies have shown a lack of consensus on the preferred type of consent [48, 51], while others have shown a preference for broad consent . The preference for broad consent among Australians was influenced by whether the biobank is in Australia or overseas . 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 . Studies conducted in the Arab region of the Middle East (Jordan and Morocco) showed a preference for broad consent [25, 26]. However, in a questionnaire study involving 600 Egyptians, many participants favored a tiered consent model or a preference for recontact . An overview of the studies that assessed the public preference for consent forms for biobanks suggests no consensus even within the same population .
Inadequate perceptions might also play an essential role in an unwillingness to share biospecimens and data with international researchers. For example, a significant proportion of our respondents thought that biobank research might lead to human cloning (16.3%) or the manufacturing of biological weapons (32.9%). Such a misperception warrants efforts to inform the public of the actual risks and benefits of biobanking, as the lack of accurate information regarding biobanks can hinder participation in such research [13, 54, 55].
We found certain factors to be of little importance to the Arab public. These included receiving potential health benefits from their donation and obtaining research results from the analysis of their specimens. Returning research results were not found to promote the public to participate in biobanking research. However, in a recent study, many Jordanians were not in favor of receiving research results regardless of whether the results revealed a treatable or untreatable disease . This is contrary to previous studies showing that Egyptians desired in having such information added to their medical files  and that most Jordanians expressed an interest in performing genetic testing to learn if they would develop cancer .
We demonstrated that the level of awareness of biobanks was not significantly associated with a willingness to participate in biobank research. This result compares with other studies investigating the views of the public toward biobanks. For example, Mezinska and colleagues surveyed the Latvia public regarding their awareness and attitudes toward biobanks and showed only a quarter of the participants were aware of biobanks and that awareness was significantly associated with education, income, residential status, and place of work . These investigators also showed that despite a low awareness, most participants either would definitely or probably be willing to provide health information about themselves to a biobank. Similar results regarding awareness and willingness were shown in a study performed in Egypt . Other studies from Europe have shown a high willingness to donate samples and information to a biobank despite low awareness.
Our participants’ level of awareness (29.9%) regarding biobanking 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 . This result is surpassed by newer studies from Egypt , Eastern Moroccans , and, more recently, Jordan , in which the rates of awareness were 53.7%, 32.4%, and 28/5%; respectively.
We found that the level of awareness about biobanks was not a predictor of a willingness to participate in biobank research. Accordingly, raising awareness alone would not be sufficient for promoting the willingness to donate samples and personal data . One possible approach might consist of promoting collaborative biobank governance that involves “the different interests of patients/donors, (public) funding agencies, clinicians/researchers acting as stewards of the hosted biosamples” . Such collaboration would preclude having scientists as the main responsible agent for the stewardship of the specimens . As shown in the fields of business, a broader understanding of partnerships that moves towards active engagement of stakeholders can be highly beneficial in allowing researchers to focus on the needs of the public and enable them to understand what is valuable to these other stakeholders [59–62]. This approach of active collaborative engagement would ensure that the public is not a mere bystander in biobank activities .