Pseudonymization of patient identifiers for translational research

• Verfasst von: Aamot, Harald Andreas [VerfasserIn]
• Verfasst von: Kohl, Christian Dominik [VerfasserIn]
• Verfasst von: Richter, Daniela [VerfasserIn]
• Verfasst von: Knaup-Gregori, Petra [VerfasserIn]
• Titel: Pseudonymization of patient identifiers for translational research
• Verf.angabe: Harald Aamot, Christian Dominik Kohl, Daniela Richter and Petra Knaup-Gregori
• E-Jahr: 2013
• Jahr: 24 July 2013
• Umfang: 15 S.
• Fussnoten: Gesehen am 04.05.2021
• Titel Quelle: Enthalten in: BMC medical informatics and decision making
• Ort Quelle: London : BioMed Central, 2001
• Jahr Quelle: 2013
• Band/Heft Quelle: 13(2013), Artikel-ID 75, Seite 1-15
• ISSN Quelle: 1472-6947
• DOI: doi:10.1186/1472-6947-13-75
• Datenträger: Online-Ressource
• Sprache: eng
• Sach-SW: Anonyms and pseudonyms
• Sach-SW: Biobanking
• Sach-SW: Data privacy
• Sach-SW: De-pseudonymisation
• Sach-SW: De-pseudonymization
• Sach-SW: Individual research results
• Sach-SW: Pseudonym
• Sach-SW: Pseudonymisation
• Sach-SW: Pseudonymization
• Sach-SW: Re-identification
• Sach-SW: Record linkage
• Sach-SW: Translational research
• K10plus-PPN: 175707354X

Abstract

The usage of patient data for research poses risks concerning the patients’ privacy and informational self-determination. Next-generation-sequencing technologies and various other methods gain data from biospecimen, both for translational research and personalized medicine. If these biospecimen are anonymized, individual research results from genomic research, which should be offered to patients in a clinically relevant timeframe, cannot be associated back to the individual. This raises an ethical concern and challenges the legitimacy of anonymized patient samples. In this paper we present a new approach which supports both data privacy and the possibility to give feedback to patients about their individual research results.