Abstract
Biobanks have become a powerful tool that fosters biomedical research. The success of biobanks depends upon people's perception and willingness to donate their samples for research. This is the first biorepository in Egypt, hence, little is known about the beliefs and attitudes of parents toward participation. To investigate the level of willingness of Egyptians to donate samples of their children and themselves for research and the different factors influencing participation. A structured questionnaire was designed covering multiple items expected to affect the enrollment decision. This was conducted in-person, and data collected included demographic data, socioeconomic, and educational level. In addition, in the case of refusal, participants were asked about reasons behind their decision. Only about 3.1% of patients have not been enrolled in the project, and 0.3% have withdrawn. Three demographic factors were found having disparate trends in the decision-making process to participate or not: father's education (p = 0.0001), mother's education (p = 0.0001), and father's age (p = 0.034). Egyptian parents were willing to donate their samples as well as their children's samples in our research biorepository. The idea of participation was presented in an interview during which the consent form was explained in a comprehensive transparent way allowing participants the right to refuse or withdraw at any time. Still, different communication approaches are needed with older, more highly educated parents to encourage them to participate.
Highlights
Mapping the human genome and the advancement of high-throughput technology has attracted more attention toward the importance of establishing and sustaining human biobanks
Our study found that parents who refused to participate in the biobank were fathers of older age rather than those of older age (p = 0.034) whereas mother’s age was of no significant influence (p = 0.056)
Our biobank is the first biobank in Egypt and during the establishment phase, we did not have an idea about people’s attitude and the rate of acceptance or refusal so we designed a survey to guide us to different reasons that might affect people’s participation
Summary
Mapping the human genome and the advancement of high-throughput technology has attracted more attention toward the importance of establishing and sustaining human biobanks. A human biobank ( known as a biorepository) is a vault to collect and archive high quality samples from participants, annotated and linked with all the clinical, demographic, and epidemiologic data of Planning Today for Tomorrow’s Research participants for advancing biomedical research (2). Even though the collection and storage of human biospecimen for research has been known for decades, a biobank as a structured harmonized core facility for sample collection is a relatively new tool (3). The success of biobanks depends upon people’s perception and willingness to donate their samples for research. This is the first biorepository in Egypt, little is known about the beliefs and attitudes of parents toward participation. Aim: To investigate the level of willingness of Egyptians to donate samples of their children and themselves for research and the different factors influencing participation
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