What Egyptians think. Knowledge, attitude, and opinions of Egyptian patients towards biobanking issues

Abstract

Background Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to assess the knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. Methods We designed a structured survey to be administered to patients coming to the outpatient clinics in 3 university hospitals in Egypt. The survey included questions estimating the level of knowledge about the term “Biobank”, together with questions about the attitudes and opinions about related issues. Results Two hundred and fifty-nine patients participated in the survey. Eighty-one percent of participants reported that they never heard about the term before. About 85% expressed that they would be willing to donate their samples for research and about 87% thought that sample donation did not contradict their religious beliefs. Fifty eight percent were willing to participate in a genetic research project, 27.8% supported sharing their sample with pharmaceutical companies, and 32.4% agreed to share their samples with institutions abroad. Conclusion Although there is limited knowledge about biobanking among Egyptian patients, many had a positive attitude towards sample donation and didn’t show religious concerns against it. However, they showed concerns regarding participation in genetic research and with sharing their samples across borders or with pharmaceutical companies. Public education about biobanking is possible, taking into consideration the specific cultural and legal framework in Egypt. Electronic supplementary material The online version of this article (10.1186/s12910-019-0394-6) contains supplementary material, which is available to authorized users.

Study of laboratory staff' knowledge of biobanking in cote d'ivoire

“…This is lower than the Merdad et al study, where 73% of health science students in Saudi Arabia reported that they had never heard of biobanking [8]. Studies on patients and general populations have shown a low level of knowledge of the term "biobank " [9][10][11][12][13].…”

“…This limited knowledge seems to be related not only to the novelty of the concept in Côte d'Ivoire, but also to the fact that the term itself can be confusing to many people. Indeed, the code "Bio" in the term "Biobank" does not refer to the role of a biobank [9]. In addition, this term is often confused with stem cell, corneal or even semen banks [14].…”

Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study

“…Corresponding results were higher for sharing of samples to other Arab countries (62.0%) compared with sharing of samples with European countries (41.8%) and with the US (37.2%) [32] . In another study involving Egyptian patients' perspectives and attitudes towards biobanking issues, the investigators found that only 32.4% agreed to share their biospecimens with institutions abroad and only 27.8% supported such sharing with pharmaceutical companies [33]. In an Italian survey involving family members of patients attending an outpatient clinic, 86% of the participants thought it was permissible to share their biospecimens and related data with non-profit organizations, but only 30% agreed with such sharing with for-profit organizations [34].…”

"Who is Watching the Watchdog?": Ethical Perspectives of Sharing Health-related Data for Precision Medicine in Singapore

“…Previous research has shown general public reticence to share data across national borders, and especially with respect to sharing genomic data 48 or biological samples 49 and/or data relating to Indigenous communities. 50 Participants in this study, however, recognized the benefits of international data sharing to drive research and innovation, highlighted the value of generating knowledge that would benefit all humankind.…”