Abstract
The growing involvement of biobanks in international collaborative research creates invaluable opportunities but raises critical ethical and legal issues, e.g. on the use and sharing of health and genetic data. The appropriate governance of biobanks is key to ensuring research integrity and public trust in the methods and findings of the research. A crucial part of this requires identifying who is the controller, joint controller, or processor of personal data under the European General Data Protection Regulation (GDPR). These qualifications determine who is liable for compliance with different data protection provisions and how data subjects can implement their rights. This chapter maps the issues related to the GDPR qualifications of biobanks and external researchers. In particular, it outlines whether and under what conditions biobanks and external researchers are in a controller-processor relationship or joint controllers and the respective operational implications for biobanks. Finally, it provides some general practical advice to research biobanks.
Original language | English |
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Title of host publication | Integrity of Scientific Research |
Subtitle of host publication | Fraud, Misconduct and Fake News in the Academic, Medical and Social Environment |
Publisher | Springer International Publishing |
Pages | 93-100 |
Number of pages | 8 |
ISBN (Electronic) | 9783030996802 |
ISBN (Print) | 9783030996796 |
DOIs | |
Publication status | Published - 1 Jan 2022 |
Keywords
- Biobanks
- Controller
- Controller-processor relationship
- Data governance
- Data protection
- ELSI
- Health and genetic data
- Joint controllers
- Processor
- Research integrity