Ghiath Alahmad1,2, Tamer Hifnawy3,4, Kris Dierickx5. 1. King Abdullah International Medical Research Center (KAIMRC), Riyadh, Saudi Arabia. 2. Center of Bioethics, Harvard Medical School, Boston, Massachusetts, USA. 3. Department of Public Health and Community Medicine, College of Dentistry, Taibah University, Medina, Saudi Arabia. 4. Faculty of Medicine, Beni Suef University, Beni Suef, Egypt. 5. Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium.
Abstract
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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: M Al-Jumah; M A Abolfotouh; I B Alabdulkareem; H H Balkhy; M I Al-Jeraisy; A F Al-Swaid; E M Al-Musaaed; B Al-Knawy Journal: East Mediterr Health J Date: 2011-06 Impact factor: 1.628
Authors: David Kaufman; Gail Geller; Lisa Leroy; Juli Murphy; Joan Scott; Kathy Hudson Journal: Am J Med Genet C Semin Med Genet Date: 2008-02-15 Impact factor: 3.908