Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

Abstract

Objectives Collection and storage of biospecimens and data for biobanking raise many ethical concerns. Stakeholders’ opinions about these ethical issues are important since they can help in the development of ethical guidelines to govern biobanking activities. Physicians are among the important stakeholders since they contact potential participants and could be biobank users. The goal of this study is to evaluate the perceptions and attitude of Egyptian physicians towards ethical issues in biobanking. Methods A cross-sectional online survey was designed and distributed with the target group between November 2019 and January 2020. Results The questionnaire was completed by 223 physicians. While 65.5% reported hearing the term "Biobanking" before, 45.7% knew that there are biobanks in Egypt. Participants had a general positive attitude towards the value of biobanks in research. About 73% agreed that biobanks can share biospecimens with international research organizations, but only 42.6% supported collaboration with pharmaceutical companies, and 44% agreed to the use of user fees by biobanks. About 48% supported the use of broad consent in biobanks, and 73.1% believed that donors of biospecimens should be informed about results of research performed on their biospecimens. Conclusion Although many Egyptian physicians heard about biobanking, they had limited knowledge about the existence of biobanks in Egypt. They had concerns about commercialization, use of broad consent and user fees. A knowledge gap exists among these stakeholders, which should be covered by different educational activities. Community discussions should start to reach consensus about the issues of commercialization and return of research results.

Public Attitude towards Biobanking: An Italian University Survey

“…A quarter of participants raised a concern about the confidentiality of information (privacy) and the commercialization of biological samples. These were also the main concerns expressed in other studies [ 6 , 17 , 18 , 19 , 20 ], especially when genetic data are involved [ 13 ]. In our study the percentage of subjects willing to participate in biobanking decreased by about 10% when respondents were asked if they were willing to provide, in addition to biological samples, health and lifestyle data.…”

“…Human research biobanks can be distinguished according to the types of biological samples, such as DNA, plasma, and tissue samples, or the purpose, including disease-based (samples from patients with a specific disease), population-based, or project-driven biobanks [ 6 ]. Population biobanks are a fundamental tool to carry out pioneering multidisciplinary research for the investigation of genetic, environmental, lifestyle, and socioeconomic factors associated with the state of health [ 7 ].…”

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

“…For example, Egyptian biobank managers expressed apprehensions about international collaboration, including fears of the samples being used to develop biological weapons. Although such fears have not been reported among physicians in Egypt [ 10 ], policymakers harbor concerns related to national security considerations. As required by the recent Egyptian clinical research law, the entry or exit of human samples for medical research is allowed only after obtaining the approval of the Supreme Council for ethical review of clinical medical research [ 42 ].…”

“…Limited knowledge of stakeholders about biobanks in the Arab Middle East region has been reported in the literature [10,[19][20][21]. Educational activities aimed at communicating the concept of biobanks have been limited and often fail to reach many stakeholders [22].…”

“…Several guidelines and best practices have been advanced to manage these challenges [ 8 , 9 ]. However, variability in the political, institutional, and cultural conditions limits the seamless application of these guidelines in different settings [ 10 ], especially in low and middle-income countries (LMICs) [ 11 ]. As biobanking facilities are either underdeveloped or non-existent in many LMICs, the Biobank and Cohort Building Network (BCNet[ 12 ]) was established to allow LMICs an opportunity to work together in a coordinated and effective manner and jointly address the many challenges in developing sustainable biobanking research infrastructures [ 13 ].…”