Logo: to the web site of Uppsala University

uu.sePublikasjoner fra Uppsala universitet
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks
Middlesex Univ, Sch Law, London, England;EURAC, Ctr Biomed, Bolzano, Italy.
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Lund Univ, Fac Law, Lund, Sweden.ORCID-id: 0000-0002-5621-8485
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. EURAC, Ctr Biomed, Bolzano, Italy.
2019 (engelsk)Inngår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, nr 8, s. 1159-1167Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

The General Data Protection Regulation (GDPR) came into force in May 2018. The aspiration of providing for a high level of protection to individuals' personal data risked placing considerable constraints on scientific research, which was contrary to various research traditions across the EU. Therefore, along with the set of carefully outlined data subjects' rights, the GDPR provides for a two-level framework to enable derogations from these rights when scientific research is concerned. First, by directly invoking provisions of the GDPR on a condition that safeguards that must include 'technical and organisational measures' are in place and second, through the Member State law. Although these derogations are allowed in the name of scientific research, they can simultaneously be challenging in light of the ethical requirements and wellestablished standards in biobanking that have been set forth in various research-related soft legal tools, international treaties and other legal instruments. In this article, we review such soft legal tools, international treaties and other legal instruments that regulate the use of health research data. We report on the results of this review, and analyse the rights contained within the GDPR and Article 89 of the GDPR vis-a-vis these instruments. These instruments were also reviewed to provide guidance on possible safeguards that should be followed when implementing any derogations. To conclude, we will offer some commentary on limits of the derogations under the GDPR and appropriate safeguards to ensure compliance with standard ethical requirements.

sted, utgiver, år, opplag, sider
NATURE PUBLISHING GROUP , 2019. Vol. 27, nr 8, s. 1159-1167
HSV kategori
Identifikatorer
URN: urn:nbn:se:uu:diva-390502DOI: 10.1038/s41431-019-0386-5ISI: 000474847300002PubMedID: 30996335OAI: oai:DiVA.org:uu-390502DiVA, id: diva2:1342625
Forskningsfinansiär
EU, Horizon 2020, 741716Tilgjengelig fra: 2019-08-14 Laget: 2019-08-14 Sist oppdatert: 2019-08-14bibliografisk kontrollert

Open Access i DiVA

fulltext(457 kB)439 nedlastinger
Filinformasjon
Fil FULLTEXT01.pdfFilstørrelse 457 kBChecksum SHA-512
6061f4974fe3ab3dbe0a7887287c82ae2c5f1027c33cba8bac6fe898e708ff9de4b63eec3a847686b51ba25d0cb627804a3268dbc72a86832266e5f53930a3ff
Type fulltextMimetype application/pdf

Andre lenker

Forlagets fulltekstPubMed

Person

Slokenberga, SantaMascalzoni, Deborah

Søk i DiVA

Av forfatter/redaktør
Slokenberga, SantaMascalzoni, Deborah
Av organisasjonen
I samme tidsskrift
European Journal of Human Genetics

Søk utenfor DiVA

GoogleGoogle Scholar
Totalt: 439 nedlastinger
Antall nedlastinger er summen av alle nedlastinger av alle fulltekster. Det kan for eksempel være tidligere versjoner som er ikke lenger tilgjengelige

doi
pubmed
urn-nbn

Altmetric

doi
pubmed
urn-nbn
Totalt: 297 treff
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf