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Zintsha, azicacanga kwaye zinokusetyenziswa okuthile. Leyo yayizimeko ezintathu ezisisiseko ezathi, ngokwe-Ofisi yePatent yase-US, izakhi zofuzo zabantu ezimbini ezinxulumene nomhlaza kwafuneka zinike ilungelo lobunikazi kwinkampani yemfuza, ngaphezulu kweshumi leminyaka elidlulileyo. Ngoku, ijaji yomanyano kwela lizwe ithatha isigqibo sokuba ngaba umnyinyiva awuhambisani nomgaqo-siseko kuba, njengoko abanye besitsho, iimveliso zendalo azinakuba nelungelo elilodwa lomenzi wechiza. Isigwebo sakhe sinokujika esinye sezenzululwazi eziphambili zehlabathi, i-biotechnology, sijongise ezantsi. |
La I-American Union yenkululeko yoluntu (I-ACLU, indlalifa yentshukumo yamalungelo oluntu ngeminyaka yoo-1) kunye ne-PubPat Foundation (i-NGO ephikisana nenkqubo yangoku yelungelo elilodwa lomenzi wechiza), egameni lemibutho eyahlukeneyo yoogqirha, abaphandi nabasetyhini, ityala elichasene nokunikezelwa kwamalungelo awodwa abenzi I-BRCA2 kunye ne-BRCAXNUMX zemfuza ngoMeyi ophelileyo. Zombini zinxulumene nembonakalo yeentlobo ezahlukeneyo zomhlaza, ngakumbi ibele kunye ne-ovari. Umgwebi wase-New York Federal uRobert Sweet uve la maqela kwiveki ephelileyo ngaphambi kokuthatha isigqibo sokuba alivale na ityala okanye avule ityala ngomlomo.
Phakathi kwabamangalelwa liziko lophando kwiYunivesithi yase-Utah eyafumanisa ngo-1993 ukuba ezinye iinguqulelo ze-BRCA1 zidibene nomhlaza. Ngale nto, abanye babaphandi bayile inkampani Imimandla emininzi yemfuza Kwaye baqhubeka nokusebenza de i-BRCA2 yabekwa yodwa. Baye bachonga inani leenguqulelo. Phakathi kwe-5% kunye ne-10% yabasetyhini abanomhlaza webele banezi nguqulelo. Ngaphezu koko, abo baphatha ezi zofuzo ziguqukileyo banomngcipheko we-40% ukuya kwi-85% yomngcipheko wokuphuhlisa esi sifo.
Uvavanyo lomhlaza kwii-euro ezingama-2.200
Isiseko seYunivesithi yase-Utah safaka isicelo selungelo elilodwa lomenzi ngo-1995 kwizakhi zofuzo ngokwazo nakwinguqu abaye bayifumana, kodwa nakwabo banokuvela kwixesha elizayo. Emva kokufumana imvume yabo kwi-United States Patent nakwi-Ofisi yoRhwebo (i-USPTO), yabanika ilayisenisi kwi-Myriad Genetics, eyathi yanika le nkampani ilungelo elilodwa phezu kwabo, kwaye okona kubaluleke kakhulu, ngokutsho kwabakhalazi, ilungelo elilodwa lophando, ukuphikisa abanye oososayensi . Zombini i-USPTO kunye nenkampani yamayeza exelwe kwangaphambili nazo ziye zamangalelwa.
I-Myriad Genetics kuphela kwento enokuthengisa iimvavanyo zayo ze-DNA kwilizwe liphela. Abasetyhini abafuna ukwazi ukuba i-BRCA1 kunye ne-2 yabo iguqukile kufuneka bahlawule malunga ne-2.200 euro. Ingxaki kukuba uninzi alunakho ukuyifumana. Amaqela amabhinqa amabini, adibanisa ngaphezulu kwama-20.000 XNUMX, avele enkundleni.
Kodwa, njengoko uRachel Myers, isithethi se-ACLU, echaza, ayisiyiyo malunga nobulungisa kwezentlalo, imalunga nezinto ezintsha. "Siphikisana nomthetho ukuba amalungelo awodwa omenzi wechiza athintela ulingo kunye nophando olunokukhokelela kunyango," utshilo. Isimangalo sakhe sikwabhentsisa ijaji: "Amalungelo awodwa omenzi wechiza kwimfuzo yabantu aphula iSilungiso sokuQala [ukuguqulwa koMgaqo-siseko wase-US oqinisekisa inkululeko yokuthetha, phakathi kwabanye] kunye nomthetho welungelo elilodwa lomenzi kuba iintlobo zemvelo ziyimveliso yendalo kwaye azinakho ukuba nelungelo elilodwa lomenzi", wongeza .
Emva kwe-ACLU kunye ne-PubPat ziindidi zemibutho yezonyango nezenzululwazi zase-US. Ukongeza kuMbutho we-Molecular Pathology, ityala lisayinwe yi-American College of Genetic Medicine okanye i-American Society enamandla ye-Clinical Pathology, kunye namalungu ayo angama-130.000, kunye neKholeji ye-American Pathologists, emele i-17.000 yabo. Bonke babanga ukuba amalungelo awodwa omenzi wechiza awonakalisa umsebenzi wabo.
Zombini i-United States kunye nemithetho yase-Europe yamalungelo awodwa omenzi wechiza ayikuvumeli ukubhaliswa kwezinto ezintsha ebantwini ngokubanzi. Kodwa kangangeminyaka into abayenzileyo, ngokomthetho welungelo lobunikazi waseSpain, kukukhuselwa kwento ehlukaniswe nomzimba womntu, kubandakanya ukulandelelana ngokupheleleyo okanye ngokungafaniyo kofuzo. Njengoko u-Eva Serrano, ingcali ye-biosciences kwi-Clarke, Modet & Cº patent department, echaza, "ukuba sele iphumile emzimbeni, inokuba nelungelo elilodwa lomenzi wechiza."
Oko kukuzikhusela kukaMyriad. Bayihlukanisa imfuza ngaphandle komzimba womntu kwaye babhala ulwazi lwayo. "Ayisiyonto yendalo kodwa yenziwe ngumntu," litsho igqwetha lenkampani uBrian Poissant, olilungu lenye yeefemu zomthetho ezidumileyo kweli.
Ijaji, eseneeveki ezininzi zokuthatha isigqibo, kufuneka ivavanye ukuba ngaba amalungelo awodwa omenzi wechiza ayayeka ukutsha kumlo wokulwa nomhlaza kwaye onakalise ilungelo lempilo yabemi, njengoko abamangali begcina, okanye ngokuchaseneyo, bayakukhuthaza. Isigqibo sakhe sinokuba nefuthe elomeleleyo kumthetho welungelo lokushicilela kwabantu, kwaye ngokubanzi, kwibhayoloji.
Ngenxa yelungelo elilodwa lomenzi wechiza, iMyriad Genetics inelungelo lokulawula uvavanyo lwemfuzo olunxulumene ne-BRCA1 kunye ne-BRCA2. Ngapha koko, abanye babamangali bafumene iileta ezilumkisayo ezivela kwinkampani kwixa elidlulileyo ukuba bayeke uphando lwabo.
Akukho patents ayenzi ntsha
Usekela-mongameli wenkampani, uRichard Marsh, uqinisekisa ukuba iMyriad Genetics inelungelo elilodwa kwi-BRCA1 kunye ne-BRCA2 zofuzo e-United States. "Nangona kunjalo, asikaze sithintele okanye siphike nabani na iinjongo zabo zokuphanda," utshilo. Kwaye unikezela ngedatha: "Okoko kwakukhutshwe amalungelo awodwa omenzi wechiza, malunga namanqaku angama-7.000 aphuma kuhlobo lofuzo." Le nkampani, yenye yeyokuqala e-US ukubheja amayeza okuxela kwangaphambili, achithwe, ngokukaMarsh, iminyaka eli-15 kunye namakhulu ezigidi zeedola kwimfuza emibini nakwinguqu. Ucacisa esithi: "Amashumi amaninzi ebengazukuchitha lonke elo xesha kunye nemali ngaphandle kokhuseleko lobunikazi."
Unjingalwazi kunye nomlawuli weziko lobunikazi kwiYunivesithi yaseBarcelona, uPascual Segura, ukhumbula ukuba amalungelo awodwa omenzi wechiza "awaluniki ilungelo elininzi lokuxhaphaza into eyenziweyo ukuthintela abanye ekwenzeni oko." Okwangoku, khusela inkqubo. "Xa umenzi wechiza unyanzelekile ukuba upapashe iinkcukacha ezintsha" Oko kuvumela wonke umntu ukuba akhangele ngeenxa zonke. Enye into kukugcina imfihlo kwaye izakuba mbi kakhulu, utshilo.
U-Pascual Segura ukwakhumbula ukuba, kumaxesha athile nakwizinto ezizodwa, oorhulumente banokuthi bathimbe amalungelo awodwa omenzi wechiza. Isimangalo se-ACLU e-US sifuna, njengoko uRachel Myers evuma, "ukuba isigqibo sejaji sinefuthe elikhulu" kwilungelo lokufumana amalungelo awodwa omenzi ngokubanzi. Iinjongo zayo, kubandakanya isuti eya kwi-USPTO, kukuyifumana ingahambelani nomgaqo-siseko.