title: Ethics of children's participation in a Saudi biobank: an exploratory survey.
abstract: The aim of this study was to investigate the ethical issues involved in children's participation in research biobanks in Saudi Arabia and the Middle East.
  
  
  
  A survey of 160 respondents from four groups (researchers, physicians, medical students, and laypersons) was conducted at King Abdulaziz Medical City in Riyadh, Saudi Arabia.
  
  
  
  A clear and positive attitude toward pediatric clinical and genetic research inside and outside of Saudi Arabia was found. Parental consent is viewed as essential, with 60% saying parental consent is sufficient for children up to 12, and 40% saying it is sufficient for children 12-18 years old. More than 90% of respondents preferred to gain approval from any child with a decision-making capability; 58.2 and 38.6% of them believed that children between 12 and 18, and >18 years of age, respectively, can understand and thus give their approval for genetic research. Clear majorities in the study agreed with re-consenting children when they become adults, allowing them to withdraw at any time. A clear majority agreed that either parent could sign a consent form for their child to participate in a research biobank.
  
  
  
  All four groups believed, to varying degrees, that elements of ethical consideration were critical when involving children in research.Genet Med 18 8, 806-813.
authors.affiliation: King Abdullah International Medical Research Center (KAIMRC), Riyadh, Saudi Arabia.|Center of Bioethics, Harvard Medical School, Boston, Massachusetts, USA.
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.identifier: 0000-0001-6490-3899
authors.initials: T
authors.lastname: Hifnawy
authors.affiliation: Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium.
authors.forename: Kris
authors.initials: K
authors.lastname: Dierickx
mesh_terms: D000293:Adolescent; D018070:Biological Specimen Banks / Q000941:ethics*; D002648:Child; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D057828:Informed Consent By Minors; D008297:Male; D033282:Parental Consent / Q000706:statistics & numerical data; D010358:Patient Participation; D012529:Saudi Arabia; D011795:Surveys and Questionnaires