The complete mapping of the human genome has greatly expanded the ability to better understand the genetic basis of human disease, thus ushering in new era of personalized medicine1. Thus there is a need for the establishment of biobanks that are able to collect and supply large amounts of samples and data required to conduct large genomic studies2. Genomic research supported by population biobanks is growing worldwide, guided by the hope that this research will lead to better disease prevention and treatment through novel drug targeting, personalized treatment, as well as prediction of disease risk.
In Egypt, eight disease-based biobanks have been founded in the past few years in order to support both clinical and genomic research3. Locations of these biobanks were chosen with aim of them being equally geographically distributed. Although the number of biobanks and their research activities are growing in Egypt, no specific guidelines or regulations for biobanks have been formulated. Ethical, legal, and social issues (ELSI) are currently among the hottest topics in biobanking research. The absence of full ethical and regulatory frameworks that would govern genomic studies and biobanking activities represents one of the most pressing research-related ethical challenges in many African countries, including Egypt. Most research ethics committees (RECs) in Egypt use international research ethics guidelines, such as the Declaration of Helsinki and guidelines of the Council for International Organizations of Medical Sciences (CIOMS) and/or the Islamic Organization for Medical Sciences (IOMS) to review research protocols4.
Biobank stakeholders include participants, physicians, researchers, research institutions, funders, as well as ethics committees1. It is imperative to formulate proper strategies to identify, communicate, and engage all potential stakeholders in order to achieve mutual benefit5. The first step of building a good relationship between biobanks and their different stakeholders is to survey their prior knowledge and attitudes with regards to the concept of biobanking and related ethical issues. Building on a previous report that focused on patients, in this article, Abdelhafiz et al. examined the perceptions, attitudes and knowledge of Egyptian physicians of biobanking and biobanking activities in Egypt.
A cross-sectional online survey was designed for the purposes of this study. The target population was Egyptian physicians currently working in Egypt at different public and private health centers. An introduction preceded the first section of the questionnaire on Google Forms. The introduction included a brief explanation of what biobanks were and a summary of their role in research. This was supplemented by a number of links to videos and sources of further reading about biobanks. The survey questionnaire was comprised of three main sections; a) sociodemographic information; b) basic prior knowledge of biobanking; and c) perceptions and attitudes towards biobanking. The study was performed in accordance with relevant regulations.
About two thirds of physicians reported having heard the term “biobanking” before. However, only 45.7% had knowledge about the existence of a number of biobanks in Egypt. The majority of participants’ responses towards the survey items indicated positive attitudes towards biobanking. It is noteworthy that physicians reported the highest level of agreement in response to the following statements “I would like more information about biobanks to be more readily available” (97.3%); “I think biobanks can make a difference in biomedical research in general” (95.9%); “The presence of biobanks is important for the development of new treatments” (95.5%); and “The presence of biobanks is important for the development of new methods of diagnosis” (94.1%). Moreover, the following statements yielded the highest level of uncertainty (a response of ‘unsure’) among participants: “I will donate samples myself and will ask my relatives to donate samples to a biobank” (39%); “Donating samples for research is in line with my religious beliefs” (30%); “I would be willing to help create a biobank at my institute” (21.1%); and “In the future, I will be interested in applying to acquire samples for research from a biobank” (20.6%).
The highest level of disagreement, at 41.3%, was in response to the following statement “I will not donate my samples to a biobank because my identity could be known through my DNA“. On the other hand, the following statements yielded the highest levels of agreement: “Biobanks may provide any medical information to the treating physician” (82.1%); and “Biobanks may share samples and data with international research organizations” (73.1%). The majority of the physicians (94.2%) supported the following statement: “A transparent policy for distribution of samples to researchers should exist“. On the other hand, the statement asserting that “biobanks own the stored samples” attained the lowest level of agreement (35.4%) of the five statements in the governance section of the questionnaire. With regards to consent and biobank participant’s rights, most responses revealed a general agreement among physicians.
According to the authors, “Although Egyptian physicians displayed an acceptable level of knowledge of biobanking, they had limited knowledge of the actual existence of biobanks in Egypt. They had concerns about the commercialization of biobanks, the use of broad consent and about user fees. A knowledge gap exists among these important biobank stakeholders, which should be covered by active marketing and continuous engagement by biobankers in Egypt. Broad community-wide discussions are essential in order for stakeholders to reach consensus with regards to issues of commercialization and return of research results.”
References
- Swede H, Stone CL, Norwood AR. National population-based biobanks for genetic research. Genet Med. 2007 Mar;9(3):141–9.
- Amin L, Hashim H, Mahadi Z, Ismail K. Determinants of the willingness to participate in biobanking among Malaysian stakeholders in the Klang Valley. BMC Med Res Methodol. 2018 Dec 5;18(1):163.
- Abdelhafiz AS, Fouda MA, El-Jaafary SI, Farghly MI, Salem M, Tammam A, et al. Targeting Future Customers: An Introductory Biobanking Course for Undergraduate Students of Life Sciences. Biopreserv Biobank. 2017 Aug;15(4):350–359.
- Sleem H., El-Kamary S.S. & Silverman H.J. Identifying structures, processes, resources and needs of research ethics committees in Egypt. BMC Med Ethics 11, 12 (2010).
- Campos AH, Schreeder M, Parry-Jones A, Abdelhafiz AS, Larson D, Pruetz B, et al. Addressing the Challenge of Financial Sustainability in Biobanking. Biopreserv Biobank. 2015 Dec;13(6):387–95.
About the Author
Dr. Aparna Rao is a research scientist experienced in tumor immunology, cell biology and genetics. She is also a biobank manager overseeing collection, processing and inventorying of 250+ brain tumor specimens for the adult brain tumor bank at the University of Pittsburgh.
