Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

Abstract

Background Biobanks have recently been established in several low- and middle-income countries (LMICs) in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks. Methods In-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt (6), Jordan (1), and Sudan (1). Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45–75 min. After verbal consent, interviews were recorded and then transcribed. The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process. Results Biobank managers discussed the main challenges in establishing their biobanks. These included the staff’s lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders. Conclusion Managers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust.

Sustained agreement rates in the longitudinal assessment of lupus patients to a Broad Consent for personal data and specimen usage in the RHINEVIT biobank

“…This holds true also for rheumatology care in the United Kingdom, where patients' knowledge of biobanks was described as still limited even though a large nationwide biobank is in place for a large population-based prospective study ( 1 , 38 ). Limited biobank funding may hinder the establishment of appropriate governance infrastructures, including patient and staff education and marketing ( 39 ).…”

Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research

“…Few studies have investigated stakeholders' perspectives on biobank research in the Middle East. One study explored the perspectives of biobank managers (Abdelhafiz et al, 2022) and several surveyed research professionals (Alahmad et al, 2015(Alahmad et al, , 2020Al-Ebbini et al, 2020;Alkaraki et al, 2022). In addition, one paper explored the Islamic perspectives regarding biobanks (Alahmad and Dierickx, 2018).…”

Expert opinion on the article "Assessment of awareness of biobanking among patients and doctors: experience of the Tomsk Oblast"

“…Интервьюированные пациенты имели разный уровень образования, разную профессиональную сферу деятельности, их возраст варьировал от 19 до 65 лет, а, следовательно, они имели разный накопленный багаж знаний. При анализе литературы обращает на себя внимание тот факт, что исследования осведомленности или отношения к биобанкированию с применением метода полуструктурированного интервью обычно проводят среди определенных групп лиц, которых объединяет либо сфера профессиональной деятельности [3], либо, например, готовность быть донором [4].…”