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Human Genetics

, Volume 130, Issue 3, pp 403–413 | Cite as

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

  • Kristien HensEmail author
  • Emmanuelle Lévesque
  • Kris Dierickx
Review Paper

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.

Keywords

Legal Representative Ethical Literature Privacy Risk Broad Consent International Ethical Guideline 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

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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Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Kristien Hens
    • 1
    Email author
  • Emmanuelle Lévesque
    • 2
  • Kris Dierickx
    • 1
  1. 1.Centre for Biomedical Ethics and LawKatholieke Universiteit LeuvenLeuvenBelgium
  2. 2.Centre de Génomique et Politiques (CGP), Département de Génétique Humaine, Faculté de MédecineUniversité McGillMontréalCanada

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