Author/Editor		Trontelj, Jože
Title		Človeška genetika v osnutku slovenskega zakona o genski tehnologiji (1997)
Translated title		Human genetics in the Slovene draft law on gene technology (1997)
Type		članek
Source		Zdrav Vestn
Vol. and No.		Letnik 66, št. 10
Publication year		1997
Volume		str. 525-9
Language		slo
Abstract		The author, a member of the Working Party drafting the Law on Gene Technology, presents the principles and provisions of Chapter 4 regulating the use of gene technology in human genetics. The Draft Law, completed in September this year (1997), is structurally similar to the Austrian law on gene technology of 1994. Its provisions have been fully harmonised with the Recommendations of the Council of Europe on human genetics, as well as with the Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. Among the basic principles is that of freedom of scientific research, however restricted by the limits of ethical and social acceptability, as well as responsible behaviour towards animal and plant life and eco-systems. The Draft Law also calls for public debate before making principal decisions. The Draft Law regulates genetic testing and screening, including that used for prenatal genetic diagnosis. Any genetic testing requires the free and informed consent of the person concerned. No genetic testing is allowed unless appropriate counselling and medical support (when needed) is made available both before and after the procedure. Predictive genetic testing for late onset disorders for which no effective treatment is available is prohibited. Prenatal genetic testing may only be undertaken in the presence of a serious risk to health of the unborn child. Counselling must be of a non-directive nature. The Draft law contains detailed provisions regarding confidentiality and protection of personal genetic data, particularly outside the medical field. (Abstract truncated at 2000 characters).
Summary		Avtor, član delovne skupine, ki je izdelala osnutek zakona o genski tehnologiji, predstavlja načela in določbe 4. poglavja zakona, ki ureja rabo genske tehnologije v človeški genetiki. Osnutek novega zakona, ki je bil končan septembra letos (1997), je po zasnovi podoben avstrijskemu zakonu o genski tehnologiji iz leta 1994. Njegove določbe so povsem usklajene s priporočili Sveta Evrope o človeški genetiki, kakor tudi s Konvencijo o varovanju človekovih pravic in dostojanstva človeškega bitja z ozirom na uporabo biologije in medicine. Med osnovnimi načeli je svoboda znanstvenega raziskovanja, vendar omejena z mejami etične in družbene sprejemljivosti, kot tudi z načelom odgovornega ravnanja z živalskim in rastlinskim svetom in ekosistemi. Osnutek zakona zahteva tudi javno razpravo pred načelnimi odločitvami. Zakon ureja genetsko preiskovanje in presejanje, vključno s tistim za namen predrojstne diagnostike. Za vsako genetsko preiskovanje človeka je potrebna svobodna privolitev po primerni poučitvi prizadete osebe. Genetsko preiskovanje ni dovojeno, če prizadeti osebi ni omogočeno posvetovanje in zdravstvena pomoč (kadar je ta potrebna) tako pred posegom kot po njem. Napovedne genetske preiskave za bolezni poznega nastopa so prepovedane, če zanje ni učinkovitega zdravljenja. Predrojstna genska diagnostika je dopustna le za bolezni, ki pomenijo resno grožnjo zdravju bodočega otroka. Svetovanje ne sme biti sugestivno. Osnutek Zakona vsebuje podrobne določbe o varovanju zaupnosti osebnih genetskih podatkov, posebno če gre za nemedicinsko rabo. (Izvleček prekinjen pri 2000 znakih.)
Descriptors		GENETICS, MEDICAL GENETIC ENGINEERING GENOME, HUMAN GENETIC TECHNIQUES GENE THERAPY