Unique characteristics of informed consent in clinical genetics and genetic counselling
Authors:
Markéta Havlovicová 1; Václava Curtisová 2; Ivan Šubrt 3
Authors‘ workplace:
Ústav lékařské genetiky 2. LF UK a FN Motol, Praha
1; Ústav lékařské genetiky LF UP a FN Olomouc
2; Ústav lékařské genetiky LF UK a FN Plzeň
3
Published in:
Čas. Lék. čes. 2019; 158: 38-43
Category:
Review Article
Overview
Rapid development of clinical genetics was enabled by the advances of molecular genetic laboratory diagnostics. Genetic laboratory testing has unique characteristics, and results of germinal genome testing has consequences not only for the patient but also for his relatives. Genetic laboratory testing in the Czech Republic is governed by the act no. 373/2011, which explicitly states that the testing requires the completion of a written informed consent.
This article explains in detail the process of obtaining an informed consent within a broader framework of genetic counselling. An informed consent with genetic laboratory testing not only informs the patient (this being its primary purpose), but can also serve as a lead for physicians of other clinical specialties intending to order genetic laboratory tests.
Keywords:
genetic counseling – Clinical genetics – genetic laboratory testing – informed consent
Sources
1. van El CG, Cornel MC, Borry P et al. Whole-genome sequencing in health care. Eur J Hum Genet 2013; 21: 580–584.
2. European Society of Human Genetics. Statement of the ESHG on direct-to-consumer genetic testing for health-related purposes. Eur J Hum Genet 2010; 18: 1271–1273.
3. Společnost lékařské genetiky a genomiky ČLS JEP, z. s. Stanovisko Společnosti lékařské genetiky ČLS JEP ke genetickým testům nabízeným přímo spotřebiteli. Dostupné na: www.slg.cz/2015/stanovisko-spolecnosti-lekarske-genetiky-cls-jep-ke-genetickym-testum-nabizenych-primo-spotrebi
4. Zákon č. 373/2011 Sb., o specifických zdravotních službách. Sbírka zákonů 2011; 131: 4802–4838.
5. Společnost lékařské genetiky a genomiky ČLS JEP, z. s. Doporučení týkající se informovaného souhlasu pro genetická laboratorní vyšetření. Dostupné na: www.slg.cz/2013/doporuceni-tykajici-se-informovaneho-souhlasu-pro-geneticka-laboratorni-vysetreni
6. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Oxford University Press, New York, 2001
7. European Society of Human Genetics. Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics. Eur J Hum Genet 2009; 17: 720–721.
8. Zákon č. 202/2017 Sb., kterým se mění zákon č. 373/2011 Sb., o specifických zdravotních službách, ve znění pozdějších předpisů, a některé další zákony. Sbírka zákonů 2017; 72: 2085–2108.
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 managementArticle was published in
Journal of Czech Physicians
2019 Issue 1
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