Abstract
When complying with appropriate safeguards, the processing of personal data for scientific research under the GDPR benefits from a special regime which is of interest for biobank research. On the one hand, under this condition, the further processing of personal data will not be incompatible with the initial purposes for which the data were originally collected and processed and it allows for retaining data for longer periods of time for scientific research. Complying with this condition is a condition to lift the prohibition to process special categories of personal data in the context of scientific research. On the other hand, complying with this condition makes it possible to derogate to some extent to several data subjects’ rights such as the right of access, the right to rectification, the right to the restriction of processing and the right to object to the processing.
Possible safeguards range from specific procedures to support the exercise of data subjects’ rights to the use of anonymous data or (where necessary) of pseudonymised data, the appointment of a data protection officer, enforcing a procedure to ensure a feedback to data subjects on the results of the research, requiring specific professional accreditations, creating a specific supervisory body for the biobank research, or the creation of a specific Code of conduct for biobank research activities.
This double regime under the GDPR is finally compared with the 2009 OECD Guidelines in biobanks and genetic research databases.
Possible safeguards range from specific procedures to support the exercise of data subjects’ rights to the use of anonymous data or (where necessary) of pseudonymised data, the appointment of a data protection officer, enforcing a procedure to ensure a feedback to data subjects on the results of the research, requiring specific professional accreditations, creating a specific supervisory body for the biobank research, or the creation of a specific Code of conduct for biobank research activities.
This double regime under the GDPR is finally compared with the 2009 OECD Guidelines in biobanks and genetic research databases.
Original language | English |
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Title of host publication | Law, Governance and Technology Series |
Subtitle of host publication | Individual rights, public interest and research regulation across Europe |
Editors | Santa Slokenberga, Olga Tzortzatou, Jane Reichel |
Publisher | Springer |
Pages | 105-120 |
Number of pages | 16 |
ISBN (Electronic) | 978-3-030-49388-2 |
DOIs | |
Publication status | Published - 6 Jan 2021 |
Publication series
Name | Law, Governance and Technology Series |
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Volume | 43 |
ISSN (Print) | 2352-1902 |
ISSN (Electronic) | 2352-1910 |