nesihlomelo historical
Esi sihlomelo sembali sinika ukuhlaziywa okufutshane malunga nokuziphatha kophando eMelika.
Naliphi na ingxoxo malunga nokuziphatha kophando kufuneka ivume ukuba, ngaphambili, abaphandi benze izinto ezinzima egameni lezesayensi. Enye yezona zimbi kakhulu zezi zifundo zeTuskegee Syphilis Study (itafile 6.4). Ngomnyaka we-1932, abaphandi base-US Service Health Service (PHS) babhalisa malunga namadoda angama-400 abamnyama abathwetshwe nge-syphilis kwisifundo ukujonga iziphumo zesifo. La madoda ayethabathelwa kwindawo ejikeleze iTuskegee, Alabama. Ukususela ekuqaleni isifundo sasingenakulinganiswa; Yenzelwe ukuba ibhale nje imbali yesifo kubantu abantsundu. Abathathi-nxaxheba bekhohlisiwe malunga nohlobo lwesifundo-baxelelwa ukuba kwakuyinto yokufunda "igazi elibi" -nokuba bafumana unyango olungamanga noluncedo, nangona isifo sisifo esibulalayo. Njengoko isifundo saqhubela phambili, uphuculo olukhuselekileyo nolunempumelelo lwe-syphilis lwaphuhliswa, kodwa abaphandi baphumelela ngokuthintela ukuthintela abathathi-nxaxheba ukuba bafumane unyango kwenye indawo. Ngokomzekelo, ngexesha leMfazwe Yehlabathi II, iqela lophando lugcina iifom zokufakela izibhengezo kubo bonke abantu ekufundeni ukwenzela ukuthintela unyango ababenokuyifumana xa bengena kwiiMpi zoMkhosi. Abaphandi baqhubeka bekhohlise inxaxheba kwaye bayabenqaba ukunyamekela iminyaka engama-40.
Isifundo seTuskegee Syphilis senzeke ngokubhekiselele kwintlupheko yobuhlanga kunye nokungalingani okugqithisileyo kwakuqhelekileyo kwinxalenye esemzantsi ye-United States ngelo xesha. Kodwa, ngaphezu kwembali yayo yeminyaka engama-40, uvavanyo lwabandakanya abaninzi abaphandi, abomnyama nabamhlophe. Kwaye, ngaphezu kwabaphandi abachaphazelekayo ngokuthe ngqo, baninzi kufuneka bafunde enye yeengxelo ezi-15 zoluphando olupapashwe kwiincwadi zonyango (Heller 1972) . Phakathi ne-1960-malunga neminyaka engama-30 emva kokuqalisa isifundo-umqeshwa we-PHS ogama linguRobert Buxtun waqalisa ukunyusa ngaphakathi kwe-PHS ukuphelisa isifundo, esicinga ngokuziphatha kakubi. Ekuphenduleni kwiBuxtun, ngo-1969, i-PHS yadibanisa iphaneli ukwenza ukuphononongwa okupheleleyo kovavanyo lwesifundo. Ngokukrakra, iipaneli zokuphonononga ngokuziphatha zenze isigqibo sokuba abaphandi bafanele baqhubeke bewuthintela unyango kubantu abasulelekileyo. Ngethuba leengxoxo, elinye ilungu lepaneli lathi: "Awuze ube nesinye isifundo esinje; uyisebenzise " (Brandt 1978) . Iphaneli yonke emhlophe, eyona yenziwe ngoogqirha, yenze isigqibo sokuba enye ifomu yemvume enolwazi ifumaneke. Kodwa iphaneli yawagweba amadoda angakwaziyo ukubonelela imvume enolwazi ngenxa yobudala kunye nezinga eliphantsi lemfundo. Iphaneli yinconywa, ngoko ke, ukuba abaphandi bafumana "imvume yokufumana ulwazi olunikeziweyo" ukusuka kumagosa ezonyango. Ngoko ke, nangemva kokuphononongwa okupheleleyo kwemilinganiselo yokuziphatha, ukugcinwa kwenkathalo kuqhubeka. Ekugqibeleni, uButxtun wathatha ibali kwintatheli, kwaye ngowe-1972, uJean Heller wabhala uluhlu lwamaphepha epapasho atyhila i sifundo kwihlabathi. Kwakuphela emva kokuthukutheliswa komphakathi okwakusasazeka ekugqibeleni ukuba isifundo sagqitywa kwaye ukunyamekelwa kwenzelwa amadoda ayesinda.
| Umhla | Isiganeko |
|---|---|
| 1932 | Malunga namadoda angama-400 ane-syphilis abhalisiwe kwisifundo; abazakwazisi ngolu hlobo lophando |
| 1937-38 | I-PHS ithumela iiyunithi zonyango zonyango kwindawo leyo, kodwa unyango luya kugcinwa kumadoda ekufundweni |
| 1942-43 | Ukuze ukhusele amadoda ekufundeni ukuba athathe unyango, i-PHS ingenelela ekuthintela ukuba ibhalwe phantsi kwiWWII |
| - 1950 | I-Penicillin iba yindlela ekhoyo ekhoyo kwaye yonyango ye-syphilis; Amadoda (Brandt 1978) |
| 1969 | I-PHS idibanisa ukuphononongwa kokuziphatha kweso sifundo; iphaneli icebisa ukuba isifundo siqhubeke |
| 1972 | UPeter Buxtun, owayengumqeshwa we-PHS, uxelele intatheli malunga nokuhlola, kwaye umshicileli uphula ibali |
| 1972 | I-Senate yase-United States inamacala okuvavanywa kwimizamo yabantu, kubandakanywa iSifundo seTuskegee |
| 1973 | Urhulumente uphelisa ngokusemthethweni uvavanyo kwaye ugunyazisa unyango lwabasindisayo |
| 1997 | UMongameli waseMelika uBill Clinton esidlangalaleni aze axolise ngokusemthethweni iSifundo seTuskegee |
Amaxhoba alesi sifundo awabandakanyi nje kuphela amadoda angama-399, kodwa kunye neentsapho zabo: ubuncinane abafazi abangama-22, abantwana abali-17 kunye nabazukulu aba-2 abane-syphilis banokuthi bangene kwisifo ngenxa yesigxina sokunyanga (Yoon 1997) . Ngaphezu koko, ingozi eyabangelwa isifundo yaqhubeka ixesha elide emva kokuba iphelile. Ucwaningo-olufanelekileyo-lwanciphisa ithemba lokuba ama-Afrika aseMelika ayenayo kuluntu lwezonyango, ukukhukuliseka kwithemba eliye lakhokelela ama-Afrika aseMelika ukuba agweme unyango lwezempilo ukuze (Alsan and Wanamaker 2016) impilo yabo (Alsan and Wanamaker 2016) . Ukongezelela, ukungabikho kwethemba kuye kwaphazamisa imizamo yokunyanga i-HIV / AIDS kuma-1980 kunye ne-90 (Jones 1993, chap. 14) .
Nangona Kunzima ukuba nomfanekiso uphando manyumnyezi eyenzekayo namhlanje, ndicinga ukuba kukho izifundo ezintathu ezibalulekileyo ukusuka Tuskegee Gcushuwa Study abantu liqhuba uphando lwezentlalo kweminyaka yesuntswana. Okokuqala, sisifundisa ukuba kukho amanye amaphononongo ngokulula kufuneka kwenzeke. Okwesibini, kubonisa ukuba uphando banokubenzakalisa bengenanxaxheba nje, kodwa iintsapho zabo kunye noluntu luphela elide emva kokuba uphando lugqityiwe. Okokugqibela, ibonisa ukuba abaphandi kwenza izigqibo ezoyikekayo ngokweenqobo. Enyanisweni, ndicinga ukuba kufanele esenza ezinye kukoyika abaphandi namhlanje ukuba abantu abaninzi kangaka inxaxheba kwesi sifundo wenza izigqibo ezimbi ezifana kwithuba elide xesha. Kwaye, ngelishwa, Tuskegee yayingathethi eyodwa; kukho eminye imizekelo emininzi yophando yingxaki zentlalo zonyango ngeli xesha (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .
Ngowe-1974, ngokuphendula kwisifundo se-Tuskegee Syphilis kunye nezinye iziphulo zokuziphatha ezenziwa ngabaphandi, i-US Congress yenze iKhomishoni kaZwelonke yoKhuseleko lwaBantu abaSebenzi bezoBomi kunye noPhando loPhando kwaye yenze umsebenzi wokuphuhlisa izikhokelo zokuziphatha zophando lwezifundo zabantu. Emva kweminyaka emine yentlanganiso kwiziko leNkomfa yeBelmont, iqela livelise ingxelo yeBelmont , ingxelo eye yaba nefuthe elikhulu kwiimbambano ezingabonakaliyo kwi-bioethics kunye nomsebenzi wemihla ngemihla yophando.
I-Belmont Report inezigaba ezintathu. Kwiimimiselo zokuqala phakathi koMsebenzi kunye noPhando-ingxelo ibeka ingcamango yayo. Ngokukodwa, ichaza ulwahlulo phakathi kophando , olufuna ulwazi olusenzekayo, kunye nokusebenza , olubandakanya unyango lweentsuku kunye nemisebenzi. Ukongezelela, ichaza ukuba imigaqo yokuziphatha yeBelmont Report isebenza kuphela kuphando. Kuye kwaxelwa ukuba oku kwahlukileyo phakathi kophando kunye nokusebenza yindlela enye iBellmont Report engayifanelekanga ngayo uphando loluntu kwi-digital age (Metcalf and Crawford 2016; boyd 2016) .
Ingxenye yesibini neyesithathu yeNgxelo yeBelmont ibeka imigaqo emithathu yokuziphatha-Inhlonipho yabantu; Inzuzo; kunye noBulungisa-kwaye uchaze indlela le migaqo ingasetyenziswa ngayo kwindlela yokuphanda. Le yimi miselo endiyichaze ngokubanzi kwingcaciso ebalulekileyo yesi sahluko.
Umbiko weBelmont ubeka iinjongo ezibanzi, kodwa akusikho umbhalo onokusetyenziswa ngokulula ukujongana nemisebenzi yemihla ngemihla. Ngako oko, uRhulumente waseMelika udale imimiselo yemigaqo ebizwa ngokuba yi- Common Rule (igama labo elisemthethweni yiCandelo 45 loMgaqo weMigangatho kaRhulumente, iNgxenye 46, i-Sub-AD) (Porter and Koski 2008) . Le migaqo ichaza inkqubo yokuhlaziywa, ukuvunywa, nokunyamekela uphando, kwaye yimimiselo yokuba amabhodi okuhlaziywa kweziko (i-IRBs) enomsebenzi wokunyanzelisa. Ukuqonda umahluko phakathi kweNgxelo yeBelmont kunye noMthetho oqhelekileyo, qwalasela indlela nganye ixoxa ngayo ngemvume enolwazi: I-Belmont Report ichaza izizathu zefilosofi yemvume enolwazi kunye nemimandla ebanzi emele ivume imvume enyanisekileyo, ngoxa i-Common Rule ibhala ezisibhozo ezifunekayo kunye nezithandathu izinto ezikhethiweyo zedivayili yemvume enolwazi. Ngokomthetho, uMthetho oqhelekileyo ulawula phantse yonke uphando olufumana inkxaso-mali evela kuRhulumente wase-US. Ukongezelela, amaziko amaninzi afumana inkxaso-mali evela kuRhulumente wase-US ngokuqhelekileyo asebenzisa uMthetho oqhelekileyo kuwo onke uphando olwenzekayo kweso sikhungo, kungakhathaliseki ukuba yintoni inkxaso-mali. Kodwa uMthetho oqhelekileyo awusebenzi ngokuzenzekelayo kwiinkampani ezingafumani inkxaso-mali yophando evela kuRhulumente wase-US.
Ndicinga ukuba phantse bonke abaphandi bahlonipha iinjongo ezibanzi zophando lwezobugcisa njengoko kuboniswe kwiNgxelo yaseBelmont, kodwa kukho ukucaphukiswa komthetho oqhelekileyo kunye nenkqubo yokusebenza ne-IRBs (Schrag 2010, 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Ukuze kucace, abo baxhomekeke kwi-IRB akuhambisani nokuziphatha. Kunoko, bakholelwa ukuba inkqubo yangoku ayifaki ibhalansi efanelekileyo okanye ukuba ikwazi ukufezekisa iinjongo zayo ngezinye iindlela. Noko ke, ndiya kuthatha le i-IRB njengoko kunikwe. Ukuba kufuneka ulandele imigaqo ye-IRB, kufuneka wenze njalo. Noko ke, bendiya sikukhuthaza ukuba uthathe indlela imigaqo-based xa ucinga le izimiso uphando lwakho.
Le ngxelo imfutshane ngokufutshane isishwankathela indlela esifike ngayo kwi-system-based system ye-IRB yokuhlaziywa kwe-IRB e-United States. Xa sicinga ngeNgxelo yeBelmont kunye noMthetho oqhelekileyo namhlanje, simele sikhumbule ukuba zidalwe ngexesha elithile kwaye zaziphendulela ngokucacileyo kwiingxaki zelo xesha, ngokukodwa ukuphulwa kwemigaqo yezokwelapha ngexesha nangemva kweMfazwe Yehlabathi II (Beauchamp 2011) .
Ukongeza kwimigudu yenzululwazi kunye nezenzululwazi ukudala iikhowudi zokuziphatha, kwakukho nemigqaliselo emincinci nangaphantsi kakhulu eyenziwa yizinzululwazi zekhompyutha. Enyanisweni, abaphandi bokuqala ukuba baqhube kwiingxaki zokuziphatha ezidalwe ngophando lwe-digital-age babengezona zenzululwazi zentlalo: bezingcali zeengcali zeekhompyutheni, abaphandi ngokukodwa kwi-computer. Ngethuba lama-1990 kunye no-2000, abaphandi bekhompyutha bezokhuseleko baqhuba izifundo ezininzi ezingathandabuzekiyo ezibandakanya izinto ezifana nokuthatha iibhenets kunye nokukhwabanisa kumawaka eekhompyutheni kunye neephasiwedi ezibuthathaka (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Ekuphenduleni kwezi zifundo, uRhulumente wase-US-ngokukodwa iSebe loKhuseleko lwaseKhaya-wenza ikhomishoni yerbhoni ukuba ibhale isakhelo sokuziphatha esicwangcisiweyo sophando olubandakanya ulwazi kunye nobuchwepheshe bezobuchwepheshe (ICT). Isiphumo salo mzamo kwakuyimpendulo ye- Menlo (Dittrich, Kenneally, and others 2011) . Nangona iingxaki zabaphandi bezokhuseleko lwekhompyutha azifani ngokufanayo nabaphandi bezentlalo, ingxelo ye-Menlo inikeza izifundo ezintathu ezibalulekileyo kubaphandi bezenhlalakahle.
Okokuqala, iNgxelo ye-Menlo iphinda iqinisekise imigaqo emithathu ye-Belmont-Inhlonipho yabantu, inzuzo kunye noBulungisa-kwaye yongeza yesine: Inhlonipho yoMthetho kunye nomdla woluntu . Ndayichaza lo mgaqo wesine kunye nendlela ekufuneka isetyenziswe ngayo kuphando loluntu kwisicatshulwa esinqununu sahluko (icandelo 6.4.4).
Okwesibini, iNgxelo ye-Menlo ifuna abaphandi ukuba bahambe ngaphaya kwengcaciso encinci ye "uphando olubandakanya izifundo zabantu" ukusuka kwi-Report yaseBelmont kwingcamango epheleleyo "yophando olunokulimaza abantu." Ukunciphisa ububanzi beNgxelo yeBelmont iboniswe kakuhle yi-Encore. I-IRB e-Princeton ne-Georgia Tech yalawula ukuba u-Encore wayengekho "uphando olubandakanya izifundo zabantu," ngoko ke ayizange ihlaziywe phantsi koMthetho oqhelekileyo. Nangona kunjalo, i-Encore ngokucacileyo inamandla okulimaza abantu; kwiyona nto ibaluleke kakhulu, i-Encore inokubangela ukuba abantu abangenacala babanjwe ngurhulumente ophangaleleyo. Imigaqo-siseko esekelwe kumgaqo-nkqubo ithetha ukuba abaphandi akumele bafihle emva kwenkcazo emfutshane, yomthetho "yophando olubandakanya izifundo zabantu," nangona i-IRB ivumela. Kunoko, bafanele bafumane ingcamango epheleleyo "yophando ngonobungozi obunobungozi bomntu" kwaye bafanele bazithobe yonke uphando lwabo ngokwenza izinto ezinokulimaza abantu ukuba baqwalaselwe ngokuziphatha.
Okwesithathu, ingxelo ye-Menlo ifuna abaphandi ukuba bandise abachaphazelekayo abacatshangelwayo xa besetyenziselwa imigaqo yeBelmont. Njengoko uphando luye lwavela kummandla ohlukeneyo wobomi kwinto ehlanganiswe kakhulu kwimisebenzi yemihla ngemihla, iingcamango zokuziphatha kufuneka zandiswe ngaphaya kwabathathi-nxaxheba abathile bezophando ukubandakanya abangabandakanyekanga kunye nommandla apho uphando luyenzeka khona. Ngamanye amagama, ingxelo ye-Menlo ifuna abaphandi ukuba banwebe insimu yabo yokuziphatha ngaphandle kwebathathi-nxaxheba.
Esi sihlomelo sesiganeko sinikezele ngokuphononongwa okufutshane malunga nokuziphatha kophando kwizentlalo nakwizonyango nakwi-computer yesayensi. Ngonyango lobungakanani bemihla yokuziphatha kophando kwenzululwazi yezokwelapha, khangela Emanuel et al. (2008) okanye Beauchamp and Childress (2012) .
