Pseudonymization of patient identifiers for translational research
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...
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| Main Authors: | , , , |
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| Format: | Article (Journal) |
| Language: | English |
| Published: |
24 July 2013
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| In: |
BMC medical informatics and decision making
Year: 2013, Volume: 13, Pages: 1-15 |
| ISSN: | 1472-6947 |
| DOI: | 10.1186/1472-6947-13-75 |
| Online Access: | Verlag, lizenzpflichtig, Volltext: https://doi.org/10.1186/1472-6947-13-75
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| Author Notes: | Harald Aamot, Christian Dominik Kohl, Daniela Richter and Petra Knaup-Gregori |
| Summary: | 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. |
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| Item Description: | Gesehen am 04.05.2021 |
| Physical Description: | Online Resource |
| ISSN: | 1472-6947 |
| DOI: | 10.1186/1472-6947-13-75 |