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Children and biobanks: a review of the ethical and legal discussion

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Abstract

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.

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Acknowledgments

Kristien Hens and Kris Dierickx were supported by FWO Flanders, project number G029107. They also gratefully acknowledge the financial support of the European Commission under the DISC REGENERATION project (NMP3-LA-2008-213904). Emmanuelle Lévesque gratefully acknowledges the financial support of the Québec Network of Applied Genetic Medicine (RMGA) and the Canadian Institutes of Health Research (Écogène project).

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Authors and Affiliations

  1. Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Box 7001, Kapucijnenvoer 35/3, 3000, Leuven, Belgium

    Kristien Hens & Kris Dierickx

  2. Centre de Génomique et Politiques (CGP), Département de Génétique Humaine, Faculté de Médecine, Université McGill, 740, Avenue Dr. Penfield, Bureau 5202, Montréal, QC, H3A 1A4, Canada

    Emmanuelle Lévesque

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  1. Kristien Hens
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  2. Emmanuelle Lévesque
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Correspondence to Kristien Hens.

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Hens, K., Lévesque, E. & Dierickx, K. Children and biobanks: a review of the ethical and legal discussion. Hum Genet 130, 403–413 (2011). https://doi.org/10.1007/s00439-011-1031-8

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