caa a22 4500 445860863 CHVBK 20180317145442.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s00439-011-1031-8 doi (NATIONALLICENCE)springer-10.1007/s00439-011-1031-8 Children and biobanks: a review of the ethical and legal discussion [Elektronische Daten] [Kristien Hens, Emmanuelle Lévesque, Kris Dierickx] The use of tissue samples from children is vital to genetic research. Collections of such tissue, in so-called biobanks, can take the form of large-scale prospective cohort studies or disease-specific studies using tissue of children with that specific disease. Collections of samples gathered in a diagnostics context, such as blood spot cards, can also be used for genetic research. Research on stored tissue samples from children poses ethical questions that are different from those posed by the use of samples from adults. Also, the ethical questions raised by the participation of children in biobanks are not analogous to those raised by the participation of children in clinical trials. In this review we first give an overview of the international ethical guidelines and legal regulations concerning biobanking and minors. Next, we review the different themes that occur in the ethical literature on this subject. Specifically we focus on questions of risk and benefit, consent and assent and the return of individual results. We also discuss the concept of solidarity, which is a relatively new concept in the context of children and biomedical research. To conclude, we discuss the gaps and questions raised by the review. Springer-Verlag, 2011 Hens Kristien Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35/3, Box 7001, 3000, Leuven, Belgium aut Lévesque Emmanuelle Centre de Génomique et Politiques (CGP), Département de Génétique Humaine, Faculté de Médecine, Université McGill, 740, Avenue Dr. Penfield, Bureau 5202, H3A 1A4, Montréal, QC, Canada aut Dierickx Kris Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35/3, Box 7001, 3000, Leuven, Belgium aut Human Genetics Springer-Verlag 130/3(2011-09-01), 403-413 0340-6717 130:3<403 2011 130 439 https://doi.org/10.1007/s00439-011-1031-8 text/html Onlinezugriff via DOI 1 review-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00439-011-1031-8 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Hens Kristien Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35/3, Box 7001, 3000, Leuven, Belgium aut NATIONALLICENCE 700 1- Lévesque Emmanuelle Centre de Génomique et Politiques (CGP), Département de Génétique Humaine, Faculté de Médecine, Université McGill, 740, Avenue Dr. Penfield, Bureau 5202, H3A 1A4, Montréal, QC, Canada aut NATIONALLICENCE 700 1- Dierickx Kris Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35/3, Box 7001, 3000, Leuven, Belgium aut NATIONALLICENCE 773 0- Human Genetics Springer-Verlag 130/3(2011-09-01), 403-413 0340-6717 130:3<403 2011 130 439 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer