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.