Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen’s health through public-private initiatives

Cinzia Piciocchi*, Rossana Ducato, Lucia Martinelli, Silvia Perra, Marta Tomasi, Carla Zuddas, Deborah Mascalzoni

*Corresponding author for this work

Research output: Contribution to journalArticle

3 Citations (Scopus)
1 Downloads (Pure)

Abstract

This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance of genetic resources in the context of genetic biobanks in Italy is discussed, as an example of the stratification of different inputs and rules: EU law, national law, orders made by authorities and soft law, which need to be integrated with ethical principles, technological strategies and solutions. After providing an overview of the Italian legal regulation of genetic data processing, it considers the fate of genetic material and IP rights in the event of a biobank’s insolvency. To this end, it analyses two case studies: a controversial bankruptcy case which occurred in Sardinia, one of the first examples of private and public partnership biobanks. Another case study considered is the Chris project: an example of partnership between a research institute in Bolzano and the South Tyrolean Health System. Both cases seem to point in the same direction, suggesting expediency of promoting and improving public-private partnerships to manage biological tissues and biotrust to conciliate patent law and public interest.

Original languageEnglish
Pages (from-to)177-190
Number of pages14
JournalJournal of Community Genetics
Volume9
Early online date18 Sep 2017
DOIs
Publication statusPublished - Apr 2018

Keywords

  • Bankruptcy
  • Biobanking
  • Data protection
  • Gene patent
  • General Data Protection Regulation
  • Genetic data
  • Informed consent
  • Italian law
  • Privacy

Fingerprint Dive into the research topics of 'Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen’s health through public-private initiatives'. Together they form a unique fingerprint.

  • Profiles

    Cite this