Willingness to donate samples for biobank research: factors associated, attitudes and perceptions of patients in Kiruddu General Hospital.

Abstract

Background: There is a high unmet demand for human biospecimens in Africa for research. In response to this need, a biobank was established in Uganda with support from the human heredity and health in Africa (H3Africa) to collect biospecimens and accelerate research. Collection and storage of biological biospecimens is a new practice in Uganda. Widespread public participation in biobanking is central to the success of biobanks. Ownership of biospecimens is reserved as patient right. For patients to exercise their right there is need to empower them with information on biobanking. Since the practice is new to Uganda, investigating factors that impact public participation in biobanking is critical. Objectives: Our objective was to determine the willingness of patients seeking clinical care in Kiruddu General Hospital to donate their samples for biobank research, factors that influence this decision, attitudes and perceptions towards biobanking. Methods: We used convergence triangulation mixed methods study design to study factors affecting willingness to donate samples for biobank research, and the perceptions of patients towards biobanking. Seven hundred and sixty-nine participants (769), enrolled into a cross-sectional study from Kiruddu General Hospital, and six focus group discussions were conducted. Participants were selected by consecutive sampling and purposive sampling for the quantitative and qualitative arm respectively. Results: The overall willingness to donate biospecimens was (93.4, 95%CI: 91.4-94.9). Majority of the respondents had neither heard of biobanking before nor donated biospecimens at (79.2, 95%CI: 76.1 -81.9) and (93.6, 95% 91.7-95.2). Overall, participants’ preferred donation of urine compared to other biospecimens with (91.4, 95% CI: 89.2-93.2). Level of education (PR=1.06, p-value=0.02), participation of international researchers (PR=0.91, p-value= 0.03), allowed withdrawal (PR=1.07, p-value<0.001), and compensated donating (PR 0.81, p-value 0.04) were significantly associated with willingness to donate. Participants in the focus group discussions reported fear of using biospecimens in rituals, and fear of bad news as barriers to donating biospecimens. Conclusion Level of willingness to donate biospecimens reported in this study is high. There is need to educate patients about the practice of storage of biospecimens and their future use in research. This should also address the benefits of this practice, and the socio-cultural concerns of potential donors. Researchers should continuously educate patients receiving care in hospitals about biobanking to alleviate fears and negative attitudes about this practice.