Ethical principles for the usage and sharing of genomic data from research

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00064165%3A_____%2F22%3A10457222" target="_blank" >RIV/00064165:_____/22:10457222 - isvavai.cz</a>

Alternative codes found

RIV/65269705:_____/22:00077617 RIV/00064203:_____/22:10457222 RIV/00216208:11110/22:10457222 RIV/00216208:11130/22:10457222 RIV/00216224:14110/22:00133979

Result on the web

<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=MSTX_rfPDh" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=MSTX_rfPDh</a>

DOI - Digital Object Identifier

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Result language

čeština

Original language name

Etické zásady pro používání a sdílení genomických dat z výzkumu

Original language 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 sum-marizing recent relevant guidance on most aspects of working with human genomic data.

Czech name

Etické zásady pro používání a sdílení genomických dat z výzkumu

Czech 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 sum-marizing recent relevant guidance on most aspects of working with human genomic data.

Type

J_SC - Article in a specialist periodical, which is included in the SCOPUS database

CEP classification

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OECD FORD branch

30209 - Paediatrics

Project

Result was created during the realization of more than one project. More information in the Projects tab.

Continuities

V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Publication year

2022

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

Časopis lékařů českých

ISSN

0008-7335

e-ISSN

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Volume of the periodical

161

Issue of the periodical within the volume

7-8

Country of publishing house

CZ - CZECH REPUBLIC

Number of pages

5

Pages from-to

271-275

UT code for WoS article

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EID of the result in the Scopus database

2-s2.0-85148210333