Ethical issues in bio-sample sharing among the public in Jordan

Abstract

BackgroundAmong the challenges of health research are sharing and the future use of human biological samples. Usually, participants show different opinions and ethical concerns regarding the usage and sharing of their biological samples. In this study, we investigated the perspectives of Jordanian participants regarding bio-samples collection, storage, use, and sharing. MethodsThe study is cross sectional, questionnaire-based, and involved 248 participants from Jordan. Data collected included demographic, qualitative, and quantitative information from research participants. The questionnaire was accomplished in the Arabic language and data were analyzed using SPSS version 22.0. ResultsMost of the participants (77%) supported providing samples for research purposes. Yet, they expressed concerns about the future use of their samples (27.8%), storage of their bio-samples after first use (19%), and export of the bio-samples outside of the country (27%). They further indicated that they will not mind if profits are generated from the samples (36.7%). On the other hand, about 18.5% would be very unhappy and would sue the researchers if their bio-samples were reused without their consent. Conclusions and RecommendationParticipants showed strong views on specimen collection, storage, export, benefit sharing and future usage - most significantly on the consent process that permits free choices. Further research should be conducted to explore the concept of bio-samples donation and the benefit of sharing among researchers in Jordan.