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Portrait of Ana Nordberg. Photo.

Ana Nordberg

Senior lecturer

Portrait of Ana Nordberg. Photo.

Biobank and Biomedical Research: Responsibilities of Controllers and Processors under the EU General Data Protection Regulation

Author

  • Ana Nordberg

Editor

  • santa slokenberga
  • Olga Tzoryzatou
  • Jane Reichel

Summary, in English

Biobanks are essential infrastructures in current health and biomedical research. Advanced scientific research increasingly relies on processing and correlating large amounts of genetic, clinical and behavioural data. These data are particularly sensitive in nature and the risk for privacy invasion and misuse is high. The EU General Data Protection Regulation (GDPR) developed and increased harmonization, resulting in a framework defining specific duties and obligations of entities processing personal data – controllers and processors. Biobanks, in the exercise of their functions assume the role of controllers and/or processors and as such need to comply with a number of complex rules. This chapter analyses these rules, in light of Article 89 GDPR, which creates safeguards and derrogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. It identifies key compliance challenges faced by biobanks as data controllers and processors, such as determining whether the GDPR is applicable and its intersection with other regulations; when should a biobank be considered controller and processor; what are the main duties of biobanks as data controllers and processors and options for compliance.

Department/s

  • Human Rights Law
  • Health Law
  • Department of Law

Publishing year

2021-01-07

Language

English

Pages

61-89

Publication/Series

GDPR and biobanking : Individual rights, public interest and research regulation across Europe

Document type

Book chapter

Publisher

Springer

Topic

  • Law

Keywords

  • Law
  • GDPR
  • EU
  • Data Protection
  • Biobank research & GDPR
  • Biomedical research & GDPR
  • Big data & GDPR
  • Data controllers' duties
  • Biobanks & GDPR
  • Rättsvetenskap
  • EU
  • Biobanker

Status

Published

Research group

  • Human Rights Law
  • Health Law

ISBN/ISSN/Other

  • ISBN: 978-3-030-49387-5
  • ISBN: 978-3-030-49388-2