Population’s perspectives toward biobanks in scientific research: a study from Jordan

Hanin Makhlouf,1 Nasr Alrabadi,2 Omar F Khabour,1 Karem H Alzoubi,3 Wael Al-Delaimy4 1Department of Medical Laboratory Sciences, Jordan University of Science and Technology, Irbid, Jordan; 2Department of Pharmacology, Faculty of Medicine, Jordan University of Science and Technology, Irbid, Jordan; 3Department of Clinical Pharmacy, Jordan University of Science and Technology, Irbid, Jordan; 4Division of Global Health, Department of Family and Preventive Medicine, University of California at San Diego, San Diego, CA, USA Background: Biobanks (biorepositories) were established to compile collected bio-specimens for future research and usage. The collection/storage of bio-specimens triggers several social, legal, and ethical implications where public attitudes can represent the core measurement/parameter in defining the most acceptable practices and ethical approaches when dealing with biobanks. Aim: The aim of this study was to explore and understand population’s perspectives, expectations, and concerns toward biobanks in Jordan. Methods: A cross-sectional survey that included closed-ended questions was distributed among Jordanians. A total of 500 participants who are representative of the Jordanian population were included in this study. Results: There was overwhelming support (>85%) for the establishment of biobanks in Jordan, and most of the participants agreed on the importance of biobanks and samples’ donation for promoting medical research. Enthusiasm in biobanking participation was associated with the sociodemographic characteristics of participants including age, educational level, and previous knowledge of biobanks. Moreover, considering sample donation as a religiously good deed appeared to have the strongest positive correlation with willingness to donate bio-specimens for future research. Also, participants’ trust in medical and research services, especially the protection of their privacy and confidentiality, was the most critical concern when they decided to participate in biobanks. Conclusion: Population’s attitude toward biobanks in Jordan was positive and promising, and can encourage the future establishment of different biobanks. It is also necessary to take into consideration certain sociodemographic characteristics when discussing specific information with potential biobanks’ donors. Keywords: biorepositories, sample storage, sample donation, sample reuse, ethics