title: Confidentiality, informed consent and children's participation in the Saudi biobank governance: a comparative study.
abstract: The growth of research biobanks has created many new ethical challenges worldwide. This article outlines and discusses key issues in the governance of Saudi Biobank, a newly established national biobank in Saudi Arabia launched in 2014. The Saudi Biobank project includes human biological samples from participants aged 10-70 years and aims to conduct an extensive study on the influence of genes, environment and lifestyle in common diseases. We examined the strengths and weaknesses of Saudi Biobank's governance as well as the similarities and differences with 4 other biobanks (in the United Kingdom, Iceland, Estonia and Canada). Three different ethical issues are discussed in detail: confidentiality, informed consent and children's participation in research. We evaluated these issues in relation to international ethical guidelines and Islamic law. The insights gained may be useful in developing national biobanking regulations in other Islamic countries, particularly in countries of the Eastern Mediterranean Region.
authors.affiliation: King Abdullah International Medical Research Centre, Riyadh, Saudi Arabia.
authors.forename: G H
authors.initials: GH
authors.lastname: Alahmad
authors.affiliation: Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven, Leuven, Belgium.
authors.forename: K
authors.initials: K
authors.lastname: Dierickx
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D018070:Biological Specimen Banks / Q000941:ethics* / Q000458:organization & administration; D035843:Biomedical Research / Q000941:ethics* / Q000379:methods / Q000458:organization & administration; D002170:Canada; D002648:Child; D002669:Child Welfare / Q000941:ethics*; D003219:Confidentiality / Q000941:ethics; D003431:Cross-Cultural Comparison; D004957:Estonia; D030661:Genetic Privacy / Q000941:ethics*; D006801:Humans; D007055:Iceland; D007258:Informed Consent / Q000941:ethics*; D038622:Internationality; D007514:Islam; D008875:Middle Aged; D012529:Saudi Arabia; D006113:United Kingdom; D055815:Young Adult