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Slovenska pediatrija 2017; 24: 230-237

https://doi.org/

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Professional article

ETHICAL DILEMMAS IN THE USE OF DIRECT-TO-CONSUMER GENETIC TESTING

M. Oražem
Sektor radioterapije, Onkološki inštitut Ljubljana, Ljubljana, Slovenija

U. Grošelj
Klinični oddelek za endokrinologijo, diabetes in bolezni presnove, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Slovenija

Abstract

The rapid development in the field of genetic diagnostics in the last few decades has enabled it to become much more effective and cheaper at the same time, and therefore much more available, even outside the traditional settings of public healthcare institutions. New models of genetic test marketing have emerged – commercial (usually referred to as direct-to-consumer or DTC) genetic tests, which pose many ethical and medical dilemmas. At this point of development, commercial genetic tests still have very little clinical use, are mostly scientifically groundless and, because they deal with particularly sensitive healthcare genetic data, they are potentially harmful. Furthermore, genetic diagnostic testing of any kind must not be performed without appropriate non-directive genetic counselling at the same time, which is a frequent issue with commercial genetic tests. From an ethical perspective, the use of commercial genetic tests is therefore not recommended; the use of commercial genetic tests in minors is considered by most professional bodies in the field of genetics to be unacceptable.

Key words: direct-to-consumer, genetic testing, ethical dilemmas.