Etické zásady pro používání a sdílení genomických dat z výzkumu

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Title in English Ethical principles for the usage and sharing of genomic data from research
Authors

FRANKOVÁ Věra SVOZILOVÁ Hana STRÁNECKÝ Viktor STAŇO KOZUBÍK Kateřina SROVNAL Josef BENEŠOVÁ Lucie UVÍROVÁ Magdalena MACEK Milan POSPÍŠILOVÁ Šárka

Year of publication 2022
Type Article in Periodical
Magazine / Source Časopis lékařů českých
MU Faculty or unit

Faculty of Medicine

Citation
Web https://www.prolekare.cz/casopisy/casopis-lekaru-ceskych/2022-7-8-1/eticke-zasady-pro-pouzivani-a-sdileni-genomickych-dat-z-vyzkumu-133467
Keywords ethics; genomics; data sharing; standards; guidelines
Attached files
Description The current significant development of human genome/exome sequencing in biomedical research is one of the important paths leading to personalized medicine. However, sequencing of human genetic information generates potentially sensitive and exploitable data, which leads to ethical, legal, and security issues. For this reason, it is necessary to follow several measures when working with these data, applying to their entire life cycle – i.e., acquisition, storage, processing, usage, sharing, archiving, and reuse. In addition, importance of good practice during the whole data life cycle is emphasized by current European trends towards open science and digital transformation. Therefore, the following recommendations have been developed, establishing principles for work with the whole human genome sequences or parts of it in research context. The recommendations are based on two documents published by the Global Alliance for Genomics and Health (GA4GH) and on foreign literature, thus summarizing recent relevant guidance on most aspects of working with human genomic data.
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