Genetika, zasebnost in diskriminacija – raba in zloraba informacij / Genetics, Privacy and Discrimination – Use and Abuse of Information

author: Goran Klemenčič, Ministrstvo za pravosodje Republike Slovenije
produced by: Videofon d.o.o.
published: Aug. 25, 2010,   recorded: October 2007,   views: 2709
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Človeštvo se danes sooča z vsaj dvema tehnološkima revolucijama: revolucijo informacijskih in komunikacijskih tehnologij ter revolucijo na področju genetike. Obe izzivata tradicionalne poglede na bistvo posameznika, njegovo vlogo v družbi, njegovo dostojanstvo, avtonomijo in svobodo. Poleg (očitne) uporabe v medicini in raziskovanju že danes obstaja vrsta področij – v zasebnem in javnem sektorju –, v katerih so genske informacije vse pomembnejše: preprečevanje, odkrivanje in pregon kriminalitete; civilna in odškodninska odgovornost; forenzične preiskave; zdravstveno, nezgodno in življenjsko zavarovanje; zaposlitev in delovna razmerja; družinsko-pravna razmerja; izobraževanje; delovanje na trgu. Na vsakem ob omenjenih področij obstajajo dejanske in še neslutene možnosti uporabe genskih informacij; in na vsakem obstajajo možnosti zlorabe. Zato je uporabo (in zlorabo) genskih informacij nujno umestiti v širšo razpravo o pravici do zasebnosti, varstva osebnih podatkov in prepovedi diskriminacije. Hote ali nehote obstoječih pravnih in družboslovnih paradigem ni mogoče zadovoljivo aplicirati na napredek znanosti na področju elektronskih komunikacij in genetske tehnologije. Nerešeno ostaja celo vprašanje, kako gensko informacijo pravno pojmovati: kot lastnino (z vsemi njenimi nevarnostmi – odtuljivost, prenosljivost, predmet finančnih transakcij) ali kot osebnostno pravico (neodtuljiva, naravna, človeku lastna); prav tako ni zarisana meja, v kakšni meri je (bo) genske informacije dopustno uporabiti za pozitivno ali negativno diskriminacijo na različnih področjih človekovega življenja. Gre za vprašanja, ki nikakor niso le tehnične narave, ampak pomembno prispevajo k temu, v kolikšni meri bo napredek v genetiki iz Orwella (1984), Huxleyja (Pogumni novi svet) in Kafke (Proces) ustvaril preroke prihodnosti.

Humanity is in the midst of two important technological revolutions: revolution of information and communication technologies and revolution of genetic science. Both pose great challenges to the traditional established views on the place of an individual in a society, on human dignity, personal autonomy and individual freedoms. In addition to (obvious) use of genetic information in medical science and research the number of fields in which genetic information is used is increasing: law enforcement, criminal law, torts and personal injury, domestic relations, forensic science, education, employment, insurance and market. Each of these fields holds great promises for future use of genetic information; each also poses distinct and severe dangers. It is therefore essential to posit the discourse on the use (and abuse) of genetic information in a broader context of the right to privacy, protection of personal data and equality before the law. Established legal doctrines prove increasingly insufficient to deal with the myriad of issues arising from the progress of genetic science. The question of the legal nature of genetic information remains highly disputed – should it be treated as property or as individual personal right; should it come closer to the regime of property rights or of civil liberties such as privacy. Furthermore, we are only starting to contemplate the boundaries of positive and negative discrimination already arising from the use of genetic data in public and private sector. The way we proceed to answer those questions will determine to what extent will the progress of genetic science fulfil Utopian prophecies of Orwell (1984), Huxley (The Brave New Word) or Kafka (The Process).

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