Znanje kot družbena vrednota. Pogled iz medicine / Knowledge as a societal value. Perspectives from medicine

author: Jože Trontelj, Slovenska akademija znanosti in umetnosti (SAZU)
published: Oct. 21, 2011,   recorded: October 2011,   views: 21
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Pravice iz intelektualne lastnine so pomembna spodbuda za raziskovalno delo, ki naj vodi do tržne dobrine. V medicini pa lahko pripelje tudi do resnih etičnih vprašanj. Patente lahko podelijo tudi raziskovalcem, ki imajo le to zaslugo, da so prvi prihiteli do cilja po poti, ki so jo zgradili drugi. Tem pa je patent zaprl nadaljnje napredovanje. Preprosta preiskava za nenormalen gen, ki povzroča raka na dojki, se prodaja za nerazumno visoko ceno, kakršna je mnogim pacientkam, ki jo potrebujejo, nedosegljiva. Zadeva je ta čas predmet sodne obravnave v ZDA. Prihaja personalizirana, pacientu prikrojena medicina. Ne gre le za to, da se standardna zdravila izbirajo in odmerjajo glede na pacientove genetske posebnosti. Navaja se pričakovanje, da bodo razvita nova zdravila, ki bodo usmerjena naravnost na okvarjeni gen. To bi pomenilo velikansko prednost. Resni raziskovalci pa svarijo, da so ta pričakovanja najbrž močno pretirana in da je dejanski cilj zbujanja varljivih upov povečanje priliva denarja na to področje raziskav. Podobna zavajanja javnosti smo doživeli pri velikanskih obetih genske terapije in zdravljenj z zarodkovimi matičnimi celicami. Hitro naraščajoče biomedicinsko znanje je začelo vplivati na javno mnenje o zdravem načinu življenja. Kot neugoden učinek vidimo polagoma rastočo medikalizacijo družbe. Dojemanje bolezni kot negativne moralne vrednote, povezane z neodgovornostjo posameznika nasproti lastnemu zdravju, je lahko nevarna napaka, škodljiva za moralni ugled bolnikov in invalidov.


Intellectual property rights provide an incentive for research leading to marketable products. In medicine, this may give rise to serious ethical concerns. Patents may be granted to those who come first, although most of the road to the goal has been built by a number of other researchers, whose progress is now blocked by the patent. As a result a simple test for an abnormal gene causing breast cancer may be sold at a quite unreasonable price, inaccessible to many patients in need. The matter is presently a subject of legal controversy in the USA. Personalised medicine is gradually setting in. Apart from individually determined dosage regimens for standard drugs adjusted to the genetic makeup of the patient it is hoped to provide new drugs directly targeting the abnormal gene. This would offer great advantages. Serious researchers warn that such expectations may be grossly exaggerated and that greater investment into advertised research is the actual purpose of feeding false hopes. Previous examples of similar public deceit include the huge promises of gene therapy and treatments based on embryonic stem cells. The rapidly accumulating biomedical knowledge has influenced public perception of the significance of healthy life styles. As an undesired side effect, we are seeing slowly growing medicalisation of society. Perception of illness as a negative moral value associated with poor personal responsibility for one’s own health may become a dangerous misconception, detrimental to the moral status of the sick and disabled.

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