Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.
Maha E Ibrahim, Latifa Adarmouch, Alya Elgamri, Samar Abd ElHafeez, Zeinab Mohammed, Fatma Abdelgawad, Eman H Elsebaie, Ahmed Samir Abdelhafiz, Ehsan Gamel, Karima El Rhazi, Asmaa Abdelnaby, Mamoun Ahram, Henry Silverman
Author Information
Maha E Ibrahim: Department of Physical Medicine, Rheumatology and Rehabilitation, Faculty of Medicine, Suez Canal University, Ismailia, Egypt. ORCID
Latifa Adarmouch: Department of Community Medicine, Public Health and Epidemiology, Faculty of Medicine, Cadi Ayyad University, Marrakesh, Morocco.
Alya Elgamri: Department of Orthodontics, Pediatric Dentistry and Preventive Dentistry, Faculty of Dentistry, University of Khartoum, Khartoum, Sudan.
Samar Abd ElHafeez: Epidemiology Department, High Institute of Public Health, Alexandria University, Alexandria, Egypt. ORCID
Zeinab Mohammed: Department of Public Health and Community Medicine, Faculty of Medicine, Beni-Suef University, Beni-Suef, Egypt.
Fatma Abdelgawad: Pediatric Dentistry and Dental Public Health Department, Faculty of Dentistry, Cairo University, Cairo, Egypt. ORCID
Eman H Elsebaie: Department of Public Health, Faculty of Medicine, Cairo University, Cairo, Egypt.
Ahmed Samir Abdelhafiz: Department of Clinical Pathology, National Cancer Institute, Cairo University, Cairo, Egypt.
Ehsan Gamel: Department of Oral Rehabilitation, Faculty of Dentistry, University of Khartoum, Khartoum, Sudan.
Karima El Rhazi: Department of Epidemiology and Public Health, Faculty of Medicine, Sidi Mohamed Ben Abdellah University, Fez, Morocco.
Asmaa Abdelnaby: Department of Public Health, Faculty of Medicine, Cairo University, Cairo, Egypt.
Mamoun Ahram: Department of Physiology and Biochemistry, School of Medicine, The University of Jordan, Amman, Jordan. ORCID
Henry Silverman: Department of Medicine, University of Maryland School of Medicine, Baltimore, Maryland, USA. ORCID
The recent expansion of genomic biobank research in the Arab region in the Middle East North Africa has raised complex ethical and regulatory issues. However, there is a lack of studies regarding the views of Arab researchers involved in such research. We aimed to assess the perceptions and attitudes of Arab researchers regarding these issues in biobank research. We developed a questionnaire to assess the perceptions and attitudes regarding genetic research of researchers from Egypt, Sudan, Morocco, and Jordan. The questionnaire requested demographic data, perceptions, and attitudes regarding the collection, storage, and use of biospecimens and data, the use of broad consent, data security, data sharing, and community engagement. We used multiple linear regressions to identify predictors of perceptions and attitudes. We recruited 383 researchers. Researchers favored equally the use of broad and tiered consent (44.1% and 39.1%, respectively). Most respondents agreed with the importance of confidentiality protections to ensure data security (91.8%). However, lower percentages were seen regarding the importance of community engagement (64.5%), data sharing with national colleagues and international partners (60.9% and 41.1%, respectively), and biospecimen sharing with national colleagues and international partners (59.9% and 36.2%, respectively). Investigators were evenly split on whether the return of individual research results should depend on the availability or not of a medical intervention that can be offered to address the genetic anomaly (47.5% and 46.4%, respectively). Predictors of attitudes toward biospecimen research included serving on Research Ethics Committees, prior research ethics training, and affiliation with nonacademic institutions. We recommend further exploratory research with researchers regarding the importance of community engagement and to address their concerns about data sharing, with researchers within and outside their countries.
