Article Text

other Versions

PDF
Biobanks for non-clinical purposes and the new law on forensic biobanks: does the Italian context protect the rights of minors?
  1. Pamela Tozzo1,
  2. Renzo Pegoraro2,
  3. Luciana Caenazzo1
  1. 1Department of Environmental Medicine and Public Health, Legal Medicine Unit, University of Padua, Padua, Italy
  2. 2Fondazione Lanza, Padua, Italy
  1. Correspondence to Dr Pamela Tozzo, Department of Environmental Medicine and Public Health, Legal Medicine Unit, University of Padua, Via Falloppio 50, 35121, Padua, Italy; pamela.tozzo{at}unipd.it

Abstract

Biobanks are an important resource for medical research. Genetic research on biological material from minors can yield valuable information that can improve our understanding of genetic–environmental interactions and the genesis and development of early onset genetic disorders. The major ethical concerns relating to biobanks concern consent, privacy, confidentiality, commercialisation, and the right to know or not to know. However, research on paediatric data raises specific governance and ethical questions with regard to consent and privacy. We have considered the Italian normative context focusing on what is mentioned in each document on the ethical and legal requirements that guarantee the rights of minors. We found out that there is no systematic reflection on the ethical and policy issues arising from the participation of minors in biobank research. Moreover, we have focused on the same aspects for the new Italian Law on the National Forensic Biobank.

  • Biobank
  • minor
  • consent
  • forensic DNA database
  • tissue donation
  • confidentiality/privacy
  • informed consent
  • minors/parental consent
  • donation/procurement of organs/tissues

Statistics from Altmetric.com

Footnotes

  • This work is a contribution to the activities of the European project ‘Assessing Legal and Ethical Aspects of Research Using Human Tissue and Cells’.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.