Planning Today for Tomorrow’s Research: Analysis of Factors Influencing Participation in a Pediatric Cancer Research Biorepository

Abstract

BackgroundBiobanks 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.AimTo investigate the level of willingness of Egyptians to donate samples of their children and themselves for research and the different factors influencing participation.Materials and methodsA 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reasons behind their decision.ResultsOnly about 3.1% of patients have not been enrolled in the project, and 0.3% have withdrawn.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).ConclusionEgyptian 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.

What Egyptians think. Knowledge, attitude, and opinions of Egyptian patients towards biobanking issues

“…These results are comparable to those of a previous study, which found that two-thirds of Egyptians surveyed were willing to donate blood samples for future research [27]. In another study, about 97% of Egyptian parents of pediatric cancer patients agreed to donate blood samples for a cancer research biobank [28]. Our results showed similar attitudes towards donating samples for biomedical research to the attitudes of the general public in Germany, [11] Jordan, [10] and Sweden [14].…”

“…Studies conducted on the effect of sociodemographic data on attitudes towards donating to biobanks have reported contradictory results. For example, while Labib et al [28] and Nilstun and Hermerén [32] have reported negative or restrictive attitudes towards donating samples to biobanks among those with higher levels of education, Ahram et al [10] reported the presence of a positive correlation between higher education and willingness to donate samples for research.…”

Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

“…Interestingly, a similar proportion (57.7%) of 315 senior Egyptian medical students studying in medical schools in the same governorates (Cairo, Alexandria, and Assiut), who participated in a similar survey indicated a similar reluctance to donate samples or encourage family members to do so (data not published). Another comparable study to the current work reported a negative correlation between willingness to donate samples to biobanks and higher levels of education [26]. Evidently, some physicians as well as medical students prefer to lead the process of patient care and research, but not to take part in it by donating their own samples.…”

Assent and consent in adolescent research: teachers’ perspectives from a developing country

“…Especially, if the research involves invasive procedures drug trial. The parent education level can also influence the decision of participation in paediatric research [26,27].…”