Advanced

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

Nordberg, Ana LU (2019)
Abstract
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... (More)
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 exceptional norms ensuring safeguards and derogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Chapter in Book/Report/Conference proceeding
publication status
submitted
subject
keywords
Law, GDPR, EU, Data Protection, Biobank research & GDPR, Biomedical research & GDPR, Big data & GDPR, Data controllers' duties, Biobanks & GDPR, Rättsvetenskap, EU, Biobanker
host publication
Individual Rights, the Public Interest and Biobank Research
editor
slokenberga, santa; Tzoryzatou, Olga; Reichel, Jane; ; and
pages
14 pages
publisher
Springer International Publishing AG
language
English
LU publication?
yes
id
d922eed9-f641-433e-a386-f4c3739d03da
date added to LUP
2019-02-27 10:09:52
date last changed
2019-02-27 14:22:55
@inbook{d922eed9-f641-433e-a386-f4c3739d03da,
  abstract     = {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 exceptional norms ensuring safeguards and derogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. },
  author       = {Nordberg, Ana},
  editor       = {slokenberga, santa and Tzoryzatou, Olga and Reichel, Jane},
  keyword      = {Law,GDPR,EU,Data Protection,Biobank research & GDPR,Biomedical research & GDPR,Big data & GDPR,Data controllers' duties,Biobanks & GDPR,Rättsvetenskap,EU,Biobanker},
  language     = {eng},
  month        = {02},
  pages        = {14},
  publisher    = {Springer International Publishing AG},
  title        = {Biobank and Biomedical Research:  Responsibilities of Controllers and Processors under the EU General Data Protection Regulation},
  year         = {2019},
}