#PAGE_PARAMS# #ADS_HEAD_SCRIPTS# #MICRODATA#

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


Authors: Věra Franková 1,2;  Hana Svozilová 3,4,5;  Viktor Stránecký 2;  Kateřina Staňo Kozubík 3,5;  Josef Srovnal 6,7;  Lucie Benešová 8;  Magdalena Uvírová 9;  Milan Macek 10;  Šárka Pospíšilová 3,4,5
Authors‘ workplace: Ústav humanitních studií v lékařství 1. LF UK v Praze 1;  Klinika pediatrie a dědičných metabolických poruch 1. LF UK a VFN v Praze 2;  Centrum molekulární medicíny, Středoevropský technologický institut (CEITEC) MU v Brně 3;  Ústav lékařské genetiky a genomiky LF MU a FN Brno 4;  Centrum molekulární biologie a genetiky, Interní hematologická a onkologická klinika LF MU a FN Brno 5;  Ústav lékařské genetiky LF UP a FN Olomouc 6;  Ústav molekulární a translační medicíny LF UP v Olomouci 7;  Genomac výzkumný ústav, s. r. o. 8;  EUC Laboratoře CGB, a. s. 9;  Ústav biologie a lékařské genetiky 2. LF UK a FN Motol 10
Published in: Čas. Lék. čes. 2022; 161: 271-275
Category: Guidelines

Overview

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.

Keywords:

Genomics – ethics – guidelines – standards – data sharing


Sources
  1. Zákon č. 373/2011 Sb., o specifických zdravotních službách. Dostupné na: www.zakonyprolidi.cz/cs/2011-373
  2. Global Alliance for Genomic and Health. Framework for Responsible Sharing of Genomic and Health-Related Data. GA4GH, 2019. Dostupné na: www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/framework-for-responsible-sharing-of-genomic-and-health-related-data
  3. Global Alliance for Genomics and Health. Data Privacy and Security Policy. GA4GH, 2019. Dostupné na: www.ga4gh.org/wp-content/uploads/GA4GH-Data-Privacy-and-Security-Policy_FINAL-August-2019_wPolicyVersionsUPDATED.docx-2.pdf
  4. Thorogood A, Dalpé G, Knoppers BM. Return of individual genomic research results: are laws and policies keeping step? Eur J Hum Genet. 2019; 27: 535–546.
  5. Finnegan T, Hall A. Identification and genomic data. PHG Foundation, Cambridge, 2017. Dostupné na: www.phgfoundation.org/report/identification-and-genomic-data
  6. National Human Genome Research Institute. Privacy in Genomics. Dostupné na: www.genome.gov/about-genomics/policy-issues/Privacy
  7. Tavaglione N, Martin, AK, Mazger N et al. Fleshing Out Vulnerability. Bioethics 2017; 29(2): 98-107.
Labels
Addictology Allergology and clinical immunology Angiology Audiology Clinical biochemistry Dermatology & STDs Paediatric gastroenterology Paediatric surgery Paediatric cardiology Paediatric neurology Paediatric ENT Paediatric psychiatry Paediatric rheumatology Diabetology Pharmacy Vascular surgery Pain management Dental Hygienist

Article was published in

Journal of Czech Physicians

Issue 7-8

2022 Issue 7-8

Most read in this issue
Topics Journals
Login
Forgotten password

Enter the email address that you registered with. We will send you instructions on how to set a new password.

Login

Don‘t have an account?  Create new account

#ADS_BOTTOM_SCRIPTS#