title: Attitudes toward medical and genetic confidentiality in the Saudi research biobank: An exploratory survey.
abstract: Achieving a balance between giving access to information and respecting donors' confidentiality is a crucial issue for any biobank, with its large number of samples and associated information. Despite the existence of much empirical literature on confidentiality, there are too few surveys in the Middle East about the topic, particularly in the Saudi context. A survey was conducted of 200 respondents at King Abdulaziz Medical City in Riyadh, Saudi Arabia, among 5 groups of equal size, comprised of researchers, physicians, medical students, donors and laypersons, respectively. The majority of participants agreed that confidentiality is an important issue and that it is well protected in the Saudi biobank. All 5 groups showed different attitudes toward disclosing information to various third parties. They were in favor of allowing treating physicians, and to a certain extent family members, to have access to medical and genetic results from research. No significant differences were found between views on medical and genetic confidentiality. The majority of respondents agreed that confidentiality might be breached in cases with specific justified reasons. Even considering differences in religion, culture and other factors, the results of the study were consistent with those reported in the literature and research conducted in other countries. We therefore place emphasis on the importance of protecting and promoting patient/donor confidentiality and privacy.
authors.affiliation: King Abdullah International Medical Research Center (KAIMRC), King Abdulaziz Medical City, Riyadh, Saudi Arabia; Center of Bioethics, Harvard Medical School, Boston, MA, USA. Electronic address: ghiathalahmad@hotmail.com.
authors.forename: Ghiath
authors.initials: G
authors.lastname: Alahmad
authors.affiliation: Department of Public Health and Community Medicine, College of Dentistry, Taibah University, Medina, Saudi Arabia; Faculty of Medicine, Beni Suef University, Beni Suef, Egypt.
authors.forename: Tamer
authors.initials: T
authors.lastname: Hifnawy
authors.affiliation: Deanship of Scientific Research, Dammam Univerity, Dammam, Saudi Arabia.
authors.forename: Badaruddin
authors.initials: B
authors.lastname: Abbasi
authors.affiliation: Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium.
authors.forename: Kris
authors.initials: K
authors.lastname: Dierickx
mesh_terms: D022126:Access to Information; D000293:Adolescent; D000328:Adult; D001290:Attitude; D018070:Biological Specimen Banks / Q000941:ethics* / Q000592:standards; D035843:Biomedical Research / Q000941:ethics*; D003219:Confidentiality / Q000941:ethics*; D005260:Female; D030661:Genetic Privacy / Q000941:ethics*; D006801:Humans; D007258:Informed Consent; D008297:Male; D008499:Medical Records; D008875:Middle Aged; D012529:Saudi Arabia; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Biobank; Confidentiality; Ethics; Genetic research; Survey