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Kusha, akubonakali futhi kunokusebenzisa okuthile. Lezo kwakuyizimo ezintathu eziyisisekelo okwathi, ngokusho kwe-US Patent Office, izakhi zofuzo ezimbili zabantu ezihlobene nomdlavuza kwakufanele zinikeze i-patent enkampanini yezofuzo, ngaphezu kweminyaka eyishumi edlule. Manje, ijaji likahulumeni kuleliya lizwe linquma ukuthi lokhu kuvunyelwa akuhambisani yini noMthethosisekelo ngoba, njengoba abanye besho, imikhiqizo yemvelo ayinakuba nelungelo lobunikazi. Isinqumo sakhe singaguqula enye yezesayensi ehamba phambili emhlabeni, i-biotechnology, ibhekise phansi. |
La I-American Union yenkululeko yomphakathi (I-ACLU, indlalifa yokunyuswa kwamalungelo omphakathi ngawo-1) kanye nePubPat Foundation (i-NGO ephikisana nohlelo lwamanje lobunikazi) bafaka, egameni lezinhlangano ezahlukahlukene zodokotela, abacwaningi nabesifazane, icala elimelene nokunikezwa kwamalungelo obunikazi amabili izakhi zofuzo ze-BRCA2 ne-BRCAXNUMX ngoMeyi odlule. Zombili zihlobene nokuvela kwezinhlobo ezahlukahlukene zomdlavuza, ikakhulukazi ibele ne-ovarian. IJaji likaHulumeni waseNew York uRobert Sweet uzwe lawa maqembu ngesonto eledlule ngaphambi kokuthatha isinqumo sokuthi liyalivala yini leli cala noma livulwe icala ngomlomo.
Phakathi kwabamangalelwa kunesikhungo sokucwaninga e-University of Utah esathola ngo-1993 ukuthi izinguquko ezithile ze-BRCA1 zixhumene nomdlavuza. Ngalolu lwazi, abanye babaphenyi bayakha inkampani I-Myriad genetics futhi baqhubeka nokusebenza kwaze kwahlukaniswa i-BRCA2. Baphinde bakhomba izinguquko eziningi. Phakathi kuka-5% no-10% wabesifazane abanomdlavuza webele banezinguquko. Ngaphezu kwalokho, labo abaphethe lezi zofuzo eziguquliwe banengozi engama-40% kuya kuma-85% yokuthola lesi sifo.
Ukuhlolwa komdlavuza kuma-euro angama-2.200
Isisekelo e-University of Utah safaka isicelo selungelo lobunikazi ngo-1995 kuzakhi zofuzo ngokwazo nasekuguqulweni kwezinguquko abakutholile, kodwa nakulokho okungase kuvele ngokuzayo. Ngemuva kokuthola imvume yabo e-United States Patent and Trademark Office (USPTO), yabanikeza ilayisense kuMyriad Genetics, eyanikeza le nkampani ilungelo elikhethekile phezu kwabo futhi, okubaluleke kakhulu, ngokusho kwabamangali, ilungelo lokucwaninga, ukuvotela abanye ososayensi . Kokubili i-USPTO kanye nenkampani yezokwelapha ebikezelayo nabo bamangalelwe.
IMyriad Genetics iyona kuphela engamaketha izivivinyo zayo ze-DNA ezweni lonke. Abesifazane abafuna ukwazi ukuthi i-BRCA1 yabo no-2 bashintshile kufanele bakhokhe cishe ama-euro angama-2.200 20.000. Inkinga ukuthi abaningi abakwazi ukuyikhokhela. Amaqembu amabili abesifazane, ahlanganisa abalingani abangaphezu kuka-XNUMX XNUMX, avele enkantolo.
Kodwa njengoba umkhulumeli we-ACLU uRachel Myers echaza, akukhona nje mayelana nobulungiswa bezenhlalo, kumayelana nokwenza izinto ezintsha. “Siyaphikisana nasenkantolo ukuthi amalungelo obunikazi avimba ukuqulwa kwamacala nocwaningo olungaholela ekwelashweni,” usho kanje. Icala lakhe liphinde lidalule ijaji: "Amalungelo obunikazi ezakhiweni zofuzo aphula iSichibiyelo Sokuqala [ukuguqulwa koMthethosisekelo wase-US oqinisekisa inkululeko yokukhuluma, phakathi kwabanye] nomthetho welungelo lobunikazi ngoba izakhi zofuzo zingumkhiqizo wemvelo futhi azikwazi ukuba nelungelo lobunikazi", uyanezela .
Ngemuva kwe-ACLU ne-PubPat kunezinhlangano ezimbalwa ezihola phambili zezokwelapha nezesayensi zase-US. Ngaphezu kwe-Association for Molecular Pathology, icala lisayinwe yi-American College of Genetic Medicine noma i-American Society for Clinical Pathology enamandla, enamalungu ayo ayi-130.000, kanye ne-College of American Pathologists, emele abayi-17.000 babo. Bonke baphikisa ukuthi amalungelo obunikazi amabili ayalimaza umsebenzi wabo.
Yomibili imithetho yase-US kanye ne-European patent ayikuvumeli ukubhaliswa kwezinto ezintsha kumuntu jikelele. Kepha okweminyaka lokho abakunike amandla, ngokomthetho welungelo lobunikazi waseSpain, ukuvikelwa kwento ehlukaniswe nomzimba womuntu, kufaka phakathi ukulandelana okuphelele noma okuyingxenye yofuzo. Njengoba u-Eva Serrano, uchwepheshe we-biosciences emnyangweni welungelo lobunikazi waseClarke, Modet & Cº, echaza, "uma ngabe ingaphandle komzimba, ingaba nelungelo lobunikazi."
Lokho kukuvikela kukaMyriad. Bahlukanisa ufuzo ngaphandle komzimba womuntu futhi babhala imininingwane yalo. "Akuyona engokwemvelo kodwa eyenziwe ngabantu," kusho ummeli wenkampani uBrian Poissant, oyilungu lenye yezinkampani zabameli ezihlonishwayo ezweni.
Ijaji, elisalelwe amasonto ambalwa ukuthi linqume, kufanele lihlolisise ukuthi amalungelo obunikazi amabili ayayinciphisa yini indlela emisha yokulwa nomdlavuza futhi alimaze nelungelo lempilo yezakhamizi, njengoba kusho abamangali, noma ngokuphambene nalokho, bakukhuthaza lokho. Isinqumo sakhe singaphinde sibe nomthelela omkhulu emithethweni ephathelene nobunikazi bezakhi zofuzo zomuntu futhi, ngokujwayelekile, kwi-biotechnology.
Njengomphumela wamalungelo obunikazi, iMyriad Genetics inelungelo lokulawula ukuhlolwa kofuzo okuhlobene ne-BRCA1 ne-BRCA2. Eqinisweni, abanye babamangali bathole izincwadi eziyisixwayiso ezivela kule nkampani esikhathini esedlule ukuthi bashiye uphenyo lwabo.
Awekho amalungelo obunikazi angasunguli
Iphini likamongameli wenkampani, uRichard Marsh, uqinisekisa ukuthi iMyriad Genetics inelungelo elikhethekile lohlobo lwe-BRCA1 kanye ne-BRCA2 e-United States. "Kodwa-ke, asikaze sigweme noma siphike noma ngubani inhloso yabo yokuphenya," usho kanje. Futhi unikeza imininingwane ethile: "Selokhu kukhishwe amalungelo obunikazi, sekushicilelwe izindatshana ezingaba ngu-7.000 ngezakhi zofuzo." Le nkampani, engomunye wabokuqala e-US ukugembula umuthi wokuqagela owenzelwe wena uqobo, isetshenziswe, ngokusho kukaMarsh, iminyaka eyi-15 namakhulu ezigidi zamadola kuzakhi zofuzo ezimbili nasekuguqulweni kwazo. "UMyriad ubengeke asebenzise sonke leso sikhathi nemali ngaphandle kokuvikelwa kwelungelo lobunikazi," uyachaza.
Uprofesa nomqondisi wesikhungo sobunikazi e-University of Barcelona, uPascual Segura, ukhumbula ukuthi amalungelo obunikazi "awanikezi ilungelo elingakanani lokuxhaphaza okusungulwayo njengokuthi avimbele abanye ekwenzeni lokho." Noma kunjalo, vikela uhlelo. "Uma unikeza ilungelo lobunikazi, uphoqelekile ukuthi ushicilele imininingwane yokwenziwa okusha." Lokho kuvumela wonke umuntu ukuthi aseshe azungeze. "Okunye okungaba wukugcina imfihlo futhi kuzoba kubi kakhulu," uyanezela.
UPascual Segura uphinde akhumbule ukuthi, ngezikhathi ezithile ezikhethekile, ohulumeni bangathatha amalungelo obunikazi. Okufunwa yisicelo se-ACLU e-US, njengoba kuvuma uRachel Myers, "ukuze isinqumo sejaji sibe nomthelela omkhulu" ekuphatheni kofuzo ngokujwayelekile. Inhloso yabo, kufaka phakathi i-USPTO ecaleni, ukuyithola ingahambisani nomthethosisekelo.