Title |
Pseudonymization of patient identifiers for translational research
|
---|---|
Published in |
BMC Medical Informatics and Decision Making, July 2013
|
DOI | 10.1186/1472-6947-13-75 |
Pubmed ID | |
Authors |
Harald Aamot, Christian Dominik Kohl, Daniela Richter, Petra Knaup-Gregori |
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. |
X Demographics
Geographical breakdown
Country | Count | As % |
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India | 2 | 67% |
Unknown | 1 | 33% |
Demographic breakdown
Type | Count | As % |
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Practitioners (doctors, other healthcare professionals) | 3 | 100% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
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Germany | 4 | 3% |
Finland | 1 | <1% |
Mexico | 1 | <1% |
United Kingdom | 1 | <1% |
Unknown | 118 | 94% |
Demographic breakdown
Readers by professional status | Count | As % |
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Student > Ph. D. Student | 23 | 18% |
Researcher | 18 | 14% |
Student > Master | 15 | 12% |
Other | 8 | 6% |
Student > Bachelor | 7 | 6% |
Other | 27 | 22% |
Unknown | 27 | 22% |
Readers by discipline | Count | As % |
---|---|---|
Computer Science | 35 | 28% |
Medicine and Dentistry | 22 | 18% |
Social Sciences | 5 | 4% |
Unspecified | 5 | 4% |
Agricultural and Biological Sciences | 4 | 3% |
Other | 22 | 18% |
Unknown | 32 | 26% |