Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research

Abstract

Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data from diverse segments of the population have made such research possible. However, the success of biobank research depends on the willingness of the public to participate in this type of research. We aimed to explore the factors associated with the willingness of the public to participate in biobank research from four low- and middle-income countries in the Arab region (Egypt, Jordan, Morocco, and Sudan). We used a previously validated questionnaire to assess several constructs that included the public’s perceptions, attitudes, and willingness to participate in biobank research. We recruited 967 participants. More than half did not have prior awareness of biobanks. Participants’ willingness to donate biospecimens and health data was less than 10%. Our results also showed that participants harbored concerns with trust, privacy, and with data-sharing involving international researchers. Predictors of willingness to participate in biobank research included no previous involvement in research and positive attitudes toward biobanks. Finally, our study showed several differences between the four countries regarding several of the investigated constructs. We conclude there should be additional efforts to raise public awareness and enhance perceptions of the public in biobanking research to enhance trust. We further recommend qualitative research to explore the underlying factors that contribute to the public’s concerns with international data sharing that would enhance global health.

Health data sharing attitudes towards primary and secondary use of data: a systematic review

“…Studies reported the same concerns ( Table 6 ) related to sharing biobank data as with the previously discussed data types: trust, privacy, 78 , 80 , 81 and the misuse of data, 80 while sharing data with international researchers concerned Arab people. 78 However, study participants also perceived that sharing biobank data would lead to improvements in healthcare. 79 , 82 …”

“…The willingness of sharing this type of data ( Table 3 ) varied from as low as 10% in Arab countries, 78 to very high of 96% among Canadian participants. 79 Only one study reported parents’ willingness to enrol their youngest minor child in a hypothetical biobank and reported a rate of 55%.…”

“…We identified several sociodemographic predictors ( Table 7 ) of higher willingness to participate in biobank research and donate data, of which higher educational attainment and lower religiosity was confirmed in two studies. 80 , 81 Other significant data-specific predictors included: no previous involvement in research and positive attitudes toward biobanks, 78 perceiving more research benefits, fewer concerns, and fewer information needs. 81 …”

A conceptual analysis of public opinion regarding genome research in Japan

“…A possible reason for this result may come from the possibility that the general public obtains less information regarding concerns about GR through main sources (e.g., mass media). In addition, an international study reported inaccurate perceptions of the respondents about GR, such as cloning and bioweapons from biobanking donations ( Ahram et al, 2022 ). These findings suggest that social benefits (e.g., benefits to a target community), concerns, and rules (e.g., protections against genetic discrimination) must be fairly delivered to the public using social and mass media, given to the payoff and social biases.…”

Attitude towards donation of the excised foreskin after circumcision surgery for research: A study from Madinah, Saudi Arabia

“…In the current study, among the reasons underlying refusal to donate the excised foreskin for research were fear of excision of excess tissue, lack of trust, and possibilities of commercial use. Trust has been reported by several studies to be crucial for tissue donation and participation in research and clinical trials [ 28 , 42 , 43 ]. For example, a study that was conducted in Poland showed that the willingness to donate tissue for research was mostly shaped by social trust in physicians and scientists [ 35 ].…”