Historical sehlomathiso

puisano ea leha e le efe ea melao ea bongaka etsa lipatlisiso lokela ho lumela hore, nakong e fetileng, bafuputsi ba entse lintho bohloko bo tsabehang ka lebitso la saense. E mong oa bohloko bo tsabehang fetisisa e ne e le Tuskegee ea mokaola Tsa Sehlooho se Ithutoang. Ka 1932, bafuputsi ho tloha US Public Health Service (PHS) ngolisa ka bang 400 banna ba batsho le tšoaetso ea mokaola a thuto ea ho hlokomela liphello tsa lefu lena. Banna bana ba ne ba le thaotha tsoang sebakeng sa potolohileng Tuskegee, Alabama. Ho tloha qalong ea thuto e ne e bao e seng phekolo; e ne e etselitsoe ho mpa feela boitsebiso ka ho fetisisa historing ea maloetse batona ba batšo. barupeluoa ba ne ba thetsoa mabapi mofuta wa thuto-ba ile ba bolelloa hore ho ne ho ithuta "mali mpe" -le ba e filwe ea bohata 'me ba tsoele molemo kalafo, le hoja mokaola ke lefu le bolaeang. Ha thuto e ntse e tsoela pele, sireletsehileng le e sebetsang ea phekolo e bakeng sa mokaola ne ba ntshetswa pele, empa bafuputsi mafolofolo a kenella ho thibela barupeluoa ho fumana kalafo libakeng tse ling. Ka mohlala, nakong ea Ntoa ea II ea Lefatše ho etsa lipatlisiso tsa sehlopha sena secured moralo deferments bakeng banna bohle thutong e le hore ho thibela ho phekola banna ba ne ba amohetse ne ba kena hlometseng Makhotla. Bafuputsi ba tsoela pele ho thetsa barupeluoa 'me latola bona hlokomela ka lilemo tse 40. thuto e ne e le lilemo tse 40 deathwatch.

The Tuskegee ea mokaola Tsa Sehlooho se Ithutoang etsahetse khahlanong a okametsoeng ke khethollo ea morabe le ho se lekane ho feteletseng hore ho ne ho tloaelehile karolong e ka boroa ea United States ka nako eo. Empa lilemong tse fetang histori ea eona ba 40 lilemo, ho ithuta e amehang mesebetsi e mengata ea bafuputsi, ka bobeli ba batsho le ba basweu. 'Me, ho phaella ho bafuputsi ameha ka ho toba, ba bangata ho feta e tlameha ebe bala e' ngoe ea litlaleho tse 15 ea thuto e hatisitsoeng ka lingoliloeng tsa bongaka (Heller 1972) . Ka bo-ya 1960-hoo e ka bang lilemo tse 30 ka mor'a hore thuto ea qala-e leng PHS mosebeletsi e mong ea bitsoang Robert Buxtun qala ho sutumetsa ka hara PHS ho felisa thuto, e leng o ne a nka o totobetseng boitšoarong. E le karabelo ea Buxtun, ka 1969 tsa PHS ile a tsoara seboka phanele ho etsa e feletseng boitshwaro tlhahlobo ea thuto. Shockingly, e boitshwaro tekolo botjha phanele etsa qeto ea hore bafuputsi ba lokela ho tsoela pele ho hana phekolo e itseng e tsoang ho batho e leng mafu ana. Nakong ea mererong eo, setho se seng sa phanele esita ile a re: "U ke ke ba le thuto e 'ngoe e kang ena; nka monyetla oa lona " (Brandt 1978) . Tsohle phanele tšoeu, e neng e boholo entsoeng ka lingaka, o ile a etsa qeto ea hore mofuta o itseng oa tumello tsebiswa lokela ho fumaneng. Empa, phanele ahloloa banna ka bobona khone ho fana ka tumello ya hae ka lebaka la lilemo tsa bona 'me ho bophahamo ba tlaase ea thuto. Phanele kgothaletswa Ka hona, eo bafuputsi ba fumana "surrogate tumello ya hae" ho tloha ba boholong sebakeng seo bongaka. Kahoo, esita le ka mor'a hore a review le feletseng boitshwaro, e khaolitse ea tlhokomelo tsoela pele. Qetellong, Robert Buxtun nka pale eo ho ba moqolotsi oa litaba, 'me ka 1972 Jean Heller o ile a ngola letoto la lihlooho koranta ea hore a pepesa thuto ho lefatše. E ne e feela ka mor'a hore atile libete setjhaba hore thuto eo e ile ea qetella e ile ea fela le tlhokomelo ile a ithaopela ho banna ba ile ba pholoha.

Mahlatsipa a thuto ena e kenyeletsa eseng feela banna 399, empa hape ba malapa a bona: basali ba leshome bonyane 22, bana ba 17, 'me 2 litloholo le mokaola ka' na eaba tumellano le maloetse kaofela ka lebaka la khaolitse tsa kalafo (Yoon 1997) . Ho ekelletsa moo, ntsa kotsi a bakoang ke thuto ea tsoela pele ka nako e telele ka mor'a hore e ile ea fela. The thuto-lebaka le utloahalang-fokotseha tšepa hore African Maamerika a neng a sechabeng bongaka, e khoholeho a tshepa hore ka 'na eaba se ile sa etsa African-Maamerika ho qoba tlhokomelo ea meriana ho determent ea bophelo ba bona (Alsan and Wanamaker 2016) . Ho ekelletsa moo, lebaka la ho hloka ho tšepa sitisoa boiteko ba ho tšoara HIV / AIDS ka 1980 le 90s (Jones 1993, Ch. 14) .

Le hoja ho thata ho nahana lipatlisiso e tšabehang etsahalang kajeno, ke nahana ho na le lithuto life tse tharo tsa bohlokoa tse tsoang ka Tuskegee ea mokaola Tsa Sehlooho se Ithutoang bakeng sa batho khanna etsa lipatlisiso tsa phedisano a le lilemo dijethale. Ea pele, e re hopotsa hore ho na le ba bang ba lithuto tsa hore bamameli feela lokela ho etsahala. Ea bobeli, re bontša hore ho etsa lipatlisiso ka lematsa eseng feela barupeluoa, empa hape ba malapa a bona le metse ea lohle Nakoana ka mor'a ho etsa lipatlisiso e se e phethiloe. Qetellong, se bontša hore bafuputsi ka etsa liqeto tšabehang boitšoaro. Ha e le hantle, ke nahana hore ho lokela ho susumelletsa ba bang tšabo bafuputsi kajeno hore batho ba bangata ho akarelletsa ho ithuta sena se ile liqeto tse joalo bohloko bo tsabehang holim'a lintho tse joalo nako e telele ea nako. 'Me, ka bomalimabe, Tuskegee ho hang ha e ikhethang; ho ne ho le mehlala e meng e 'maloa ea ho etsa lipatlisiso mathata boiketlong ba sechaba le tsa meriana mehleng ena (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .

Ka 1974, e le karabelo ea Tuskegee ea mokaola Tsa Sehlooho se Ithutoang le tsena tse ling ho hloleha ha boitshwaro ke bafuputsi, US Congress bōpa Komisi National bakeng sa Tšireletso ea Bafo Human oa tsa lithibelo tsa biomedical le boitshwaro Research le filwego mosomo wa go ling tsohle tsa komiti ho ntshetsa pele ka ditataiso tsa boitshwaro bakeng sa phuputso amang bafo ba batho. Ka mor'a lilemo tse 'nè tsa liboka holong ea Belmont Center Conference, sehlopha se hlahisitseng le Tlaleho ea Belmont, tokomane mosesaane empa li matla e bile le sephetho se hlollang a hae mabapi le ho pheha khang ka bobeli inahaneloang a bioethics le mokhoa ona letsatsi le letsatsi re etse lipatlisiso.

The Report Belmont na likarolo tse tharo. Ea pele karolo-meeli Pakeng Itloaetseng le Research-e leng Report Belmont beha tsoa purview eona. Ka ho khetheha, e pheha khang bakeng sa ho khethollo pakeng tsa ho etsa lipatlisiso, e leng batla tsebo generalizable, 'me mokhoa ona, e akarelletsang kalafo ea letsatsi le letsatsi le mesebetsi. Ho ekelletsa moo, ho pheha khang ea hore melao-motheo e boitshwaro ea Tlaleho ea Belmont etsa feela hore a etse lipatlisiso. Ho 'nile ha pheha khang ea hore mohlomong khethollo ena pakeng tsa ho etsa lipatlisiso le ho itlhakisa ke tsela e' ngoe hore Report Belmont ke misfit hore a etse lipatlisiso tsa phedisano a le lilemo dijethale (Metcalf and Crawford 2016; boyd 2016) .

Bobeli le la boraro likarolo tse ling tsa Tlaleho ea Belmont behe boitshwaro melao-motheo-Hlompha Batho tse tharo; Beneficence; le Toka-le ho hlalosa kamoo melao-motheo ena e ka sebelisoa mokhoa ona o lipatlisiso. Tsena ke melao-motheo e le hore nka hlalosa ka ho qaqileng haholoanyane mosebetsing khaolo.

The Report Belmont beha lipakane tse sephara, empa ho ke ke ha tokomane eo ka habonolo sebelisa ho hlokomela mesebetsi e meng ea letsatsi le letsatsi. Ka lebaka leo, 'Muso oa United States o bōpile sete ya melao ea tsamaiso tse colloquially bitsoa Molao oa Common (lebitso tsa bona tsa molao ke Title 45 Code of Melawana Federal, Karolo ea 46, Subparts A - D) (Porter and Koski 2008) . le melao ea tsamaiso tsena hlalosa tshebetso bakeng sa ho hlahloba, ke lumellana le, le ho hlokomela mesebetsi etsa lipatlisiso, 'me ba melao ea tsamaiso eo Institutional Review Boards (IRBs) ba filwego mosomo wa go le qobella. Ho utloisisa phapang pakeng tsa le Tlaleho ea Belmont le Rule Tloaelehileng, nahana kamoo e mong le e tšohla tsebisoa tumello: ho Report Belmont hlalosa mabaka filosofi bakeng tumello tsebiswa le litšobotsi tse sephara tse neng li tla emela 'nete tsebisoa tumello ha a ntse a Puso Tloaelehileng thathamisa tse robeli ho hlokahala le tse tšeletseng boikhethelo likarolo tsa fumanoa tokomane tumello ya hae. Ka molao, Molao oa Common laola hoo e ka bang tsohle lipatlisiso tseo a fumana thuso ho tsoa 'Muso US. Ho ekelletsa moo, mekgatlo e mengata e amohela thuso ho tsoa 'Muso US tloaelo sebelisa Rule Tloaelehileng hore a etse lipatlisiso tsohle li etsahala nakong setheo se se, ho sa tsotellehe e leng mohloli lichelete. Empa, Molao oa Common ha e iketsang etsa nakong lik'hamphani tse sa fumane etsa lipatlisiso thuso ho tsoa 'Muso US.

Ke nahana hore hoo e ka bang bafuputsi bohle hlompha lipakane tse sephara ea patlisiso ea boitshwaro joalokaha bontšoa ka le Tlaleho ea Belmont, empa ha ho atile tšoenyeng hakaalo le Rule Tloaelehileng le tshebetso ya ho sebetsa le IRBs (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Ho ba hlakileng, ba nyatsa IRBs hase khahlanong melao ea bongaka. Na le hoo, ba lumela hore tsamaiso ya hajwale ha otla e leka-lekana loketseng ho tse thathamisitsoeng kapa ka hamolemo ho fihlela lipakane tsa lona ho pholletsa le mekhoa e meng. khaolong ena, Leha ho le joalo, e tla nka IRBs tsena e fanoang. Haeba u lokela ho latela melao ea IRB e, joale u lokela ho latela. Leha ho le joalo, ke ne ke u khothalletsa hore u boetse nka melao-motheo e thehiloeng katamelo ha ho hlahloba melao ea bongaka ea patlisiso ea hao.

semelo sena ka bokhutšoanyane haholo akaretsa kamoo re fihla melao e thehiloeng tsamaiso tsa tlhahlobo IRB United States. Ha le tšohla le Tlaleho ea Belmont le Rule Tloaelehileng kajeno, re lokela ho hopola hore ba ne ba bōpiloe ka mehla e fapaneng 'me ba-haholo ka kelello-arabela mathata a mehla ea hore, sebakeng makhalo itseng a amang melao ea bongaka ea nakong eo le ka mor'a hore ho ntoa ea bobeli ea Lefatše (Beauchamp 2011) .

Ho phaella ho matlafatsoa boiteko ba boitshwaro bo-rasaense bongaka le boitshwaro ho bopa dikhoutu boitshwaro, ho boetse ho tse nyenyane tse 'me ka tlaase ho moo hantle e ne e le tsejoa boiteko ba bo-rasaense ba k'homphieutha. Ha e le hantle, eo bafuputsi ba pele ba ho matha ho kena mathata a boitshwaro bōpiloe ke etsa lipatlisiso tsa digital dilemo ba ne ba sa litsebi tsa kahisano; ba ne ba khomphuta ya-rasaense, ka ho khetheha bafuputsi ba sireletsehile k'homphieutha. Nakong ya 1990 le 2000s khomphuteng ya bafuputsi tshireletso khanna maloa ea lithuto tsa boitshwaro tseo amehang lintho tse joaloka ho nka lilemo tse fetang botnets le Hacking ho kena lilemong tse likete lik'homphieutha le diphasewete fokolang (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . E le karabelo ea lithuto tsa tsena, US Government-ho toba Lefapha la Homeland Security-bōptjoa khomishene blue lente ho ngola tataisang moralo wa boitshwaro bakeng sa phuputso amang tlhahisoleseding le puisano e ntle kamehla theknoloji e (Marangrang). Diphetho tsa ho bapala ka matla e ne e le Tlaleho ea Menlo (Dittrich, Kenneally, and others 2011) . Le hoja dingongoreho tsa k'homphieutha bafuputsi tshireletso ha ba e tsoanang hantle joalokaha bafuputsi ha sechaba, taba tsa Report Menlo o fana ka thuto e meraro ea bohlokoa bakeng sa bafuputsi sechabeng.

Ntlha ea pele, Report Menlo se boetse se matlafatsa bana ba bararo ba Belmont melao-motheo-Hlompha Batho, Beneficence, le Toka-'me o phaella ka ho molao-motheo oa bone: Hlompha Molao le ditabatabelo tsa setjhaba. Ke hlalosoa molao-motheo ona oa bone le kamoo e lokela ho sebelisoa ho etsa lipatlisiso tsa phedisano khaolong ka sehloohong (Karolo 6.4.4).

Ea bobeli, Report Menlo ipiletsang bafuputsi ho fallela ka nģ'ane ho tlhaloso e moqotetsane ea "etsa lipatlisiso tse amanang le bafo botho" ho tloha le Tlaleho ea Belmont ho maikutlo a akaretsang ea "lipatlisiso ka ntlafatsa bokhoni ba motho-intša kotsi." Ka mefokolo ea pharalla ha le Tlaleho ea Belmont ba hantle bontšoa ke Encore. The IRBs nakong Princeton le Georgia Tech liha kahlolo ea hore e ne e se Encore "etsa lipatlisiso tse amanang le bafo ba batho," 'me kahoo hase ho ipeha tlas'a ho hlahloba tlas'a Molao oa Tloaelehileng. Leha ho le joalo, Encore ho hlaka na bokgoni ba botho-intša kotsi; ea eona e feteletseng ka ho fetisisa, Encore ka nang le monyetla fella ka batho ba se nang molato a ntse a chankaneng ke mebuso repressive. A atamela mathata melao-motheo e thehiloeng bolele hore bafuputsi ha baa lokela ho ea ipata ka mor'a moqotetsane, tlhaloso ea molao ea "etsa lipatlisiso tse amanang le bafo ba batho," esita le haeba IRBs lumella eona. Na le hoo, ba lokela ho amohela maikutlo a akaretsang ea "lipatlisiso ka motho-intša kotsi bokgoni ba" 'me ba lokela ho ipeha tlas'a' ohle a ho etsa lipatlisiso bona le motho-intša kotsi bokhoni ba ho hlahloba boitsebiso bona ho boitšoaro.

Ea boraro, ea Report Menlo ipiletsang bafuputsi ho atolosa nang le seabo hore li nkoa ha re sebelisa melao-motheo Belmont. Joalokaha ho etsa lipatlisiso e ile ea tloha le chitja fapaneng tsa bophelo ba ka ho hong ho e eketsehileng aa ageletsweng mesebetsing ea letsatsi le letsatsi, re elellwa hore boitshwaro lokela ho atolosoa ka nģ'ane ho feela barupeluoa ho etsa lipatlisiso tse tobileng tseo ho kenyeletsa batho bao e seng barupeluoa le tikoloho moo lipatlisiso tse bang teng. Ka mantsoe a mang, Report Menlo batla bafuputsi ho atolosa tšimo ea bona ea boitshwaro ea pono ea ka nģ'ane ho barupeluoa bona feela.

Sena se sehlomathiso histori ea fana ka tekolo botjha e khutšoanyane e ea melao ea bongaka phuputso e ileng ea saense ea bitsoang phedisano le bongaka, hammoho le saense ea bitsoang k'homphieutha. Bakeng sa buka bolelele kalafo ea melao ea bongaka etsa lipatlisiso tsa saense ea bongaka, ho bona Emanuel et al. (2008) kapa Beauchamp and Childress (2012) .