NDLI: Attitudes toward medical and genetic confidentiality in the Saudi research biobank: An exploratory survey.

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Attitudes toward medical and genetic confidentiality in the Saudi research biobank: An exploratory survey.

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Alahmad, Ghiath Hifnawy, Tamer Abbasi, Badaruddin Dierickx, Kris
Spatial Coverage	Saudi Arabia
Description	Author Affiliation: Alahmad G ( King Abdullah International Medical Research Center (KAIMRC), King Abdulaziz Medical City, Riyadh, Saudi Arabia); Hifnawy T ( Department of Public Health and Community Medicine, College of Dentistry, Taibah University, Medina, Saudi Arabia); Abbasi B ( Deanship of Scientific Research, Dammam Univerity, Dammam, Saudi Arabia.); Dierickx K ( Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium.)
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.
File Format	HTM / HTML
ISSN	13865056
Volume Number	87
e-ISSN	18728243
Journal	International Journal of Medical Informatics
Language	English
Publisher	Elsevier
Publisher Date	2016-03-01
Publisher Place	Ireland
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Discipline Medical Informatics Attitude Biological Specimen Banks Ethics Biomedical Research Confidentiality Genetic Privacy Medical Records Access To Information Adolescent Adult Standards Female Humans Informed Consent Male Middle Aged Saudi Arabia Questionnaires Young Adult Journal Article
Content Type	Text
Resource Type	Article
Subject	Health Informatics

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