nesihlomelo historical
Nayiphi na ingxoxo zokuphatha uphando kufuneka ukuba, elidlulileyo, abaphandi baye benza izinto ezimbi egameni ngenzululwazi. Enye yezona nobubi yaba Tuskegee Gcushuwa Study. Ngo-1932, abaphandi ukusuka US Health weNkonzo kaRhulumente (PHS) ababhalise amadoda antsundu malunga 400 abosulelwe kunye negcushuwa kwisifundo ukujonga iziphumo sifo. Aba bantu baye bagaywa ukusuka kummandla ongqonge Tuskegee, Alabama. Zisuka nje isifundo lwalungekho-zonyango; yayenzelwe ukuba uxwebhu nje imbali sifo eyindoda abamnyama. Nxaxheba za la malunga nohlobo phando-baxelelwa ukuba isisifundo 'igazi olubi "-yaye kokuba zinikwe unyango bobuxoki yaye ayiloncedo, nangona igcushuwa sisifo esibulalayo. Njengoko besiya befunda, kuphuhliswa ukuba unyango ekhuselekileyo esisebenzayo negcushuwa, kodwa abaphandi ngenkuthalo wangenelela ukuthintela nxaxheba ekufumaneni unyango kwenye indawo. Ngokomzekelo, ebudeni beMfazwe Yehlabathi II uphando iqela yafumana deferments esaqulunqwayo bonke abantu isifundo ukwenzela ukuthintela unyango amadoda obunokuyifumana ukuba bangena omkhosi. Abaphandi baqhubeka akhohlise nxaxheba kwaye ndinga- ukunyamekela engama-40. Phando yaba deathwatch engama-40.
The Tuskegee Gcushuwa Study kwenzeka nxamnye ahonjiswe ubuhlanga kunye nokungalingani ngokugqithisileyo ezithi eyayiqhelekile emazantsi US ngelo xesha. Ke, phezu kwimbali yawo engama-40, uphando obandakanyekayo abaninzi abaphandi, bobabini abamnyama nabamhlophe. Kwaye, ukongeza abaphandi babandakanyeke ngqo, abaninzi kufuneka ufunde omnye iingxelo 15 isifundo epapashwe iincwadi zonyango (Heller 1972) . Ngeminyaka yee-1960-malunga neminyaka engama-30 emva kokuqalisa kwesi sifundo-umqeshwa PHS ogama Robert Buxtun waqalisa ngunga ngaphakathi PHS ukuphelisa isifundo, leyo yena ingqalelo ngokuziphatha nyala. Ukuphendula Buxtun, ngowe-1969 le PHS labiza lenjongo ukwenza uphononongo olupheleleyo yemikhwa yophononongo. Ezothusayo, lenjongo kwakhona ezisesikweni sagqiba ukuba abaphandi kufuneka iqhubeke zokubamba unyango ebantwini abosulelekileyo. Ngexesha kwiingxoxo, elinye ilungu lenjongo wada wathi: "Uya kuze enye isifundo enjengale; Ungathatha ingqalelo kuyo " (Brandt 1978) . Zonke lenjongo emhlophe, apho uninzi yenziwe oogqirha, wenza isigqibo ukuba kukho uhlobo lwemvumelwano eyazisiweyo kufuneka zifunyanwe. Kodwa, lenjongo bagwetywa amadoda bona akakwazi ukunika imvume esekelwe elwazini ngenxa yobudala babo kunye nezinga eliphantsi lemfundo. Lenjongo kucetyiswa, ke ngoko, ukuba abaphandi kufumana "kwemvume lobunina elwazini" kumagosa yezonyango yasekuhlaleni. Ngoko ke, nokuba emva kuphononongwe ngokupheleleyo ngokweenqobo, ukurhoxisa unonophelo waqhubeka. Ekugqibeleni, uRobert Buxtun wathabatha ibali intatheli, yaye ngowe-1972 UJean Heller wabhala uthotho amanqaku amaphephandaba yayizibhenca isifundo ehlabathini. Kuphela emva kubakhubekisa uluntu ngokubanzi ukuba isifundo ekugqibeleni laphela kunye nokhathalelo babonelelwa kumadoda abo basinda.
| umhla | isiganeko |
|---|---|
| 1932 | nama 400 amadoda igcushuwa ababhalise kwisifundo; ke abangaxelelwanga uhlobo lophando |
| 1937-38 | PHS uthumela iiyunithi unyango mobile kwindawo, kodwa unyango zabanjelwa ukuba abantu ukufunda |
| 1942-43 | PHS iyangenelela ukuthintela amadoda esayilwayo ngenxa WWII ukwenzela ukuthintela ukuba bafumane unyango |
| 1950 | Ipenicillin uba unyango lufumaneke ngokubanzi kunye olusebenzayo negcushuwa; amadoda nangoku akuthathwanga (Brandt 1978) |
| 1969 | PHS ubiza ngokutsha yemikhwa phando; lenjongo licebisa ukuba isifundo kuqhubeka |
| 1972 | Peter Buxtun, umsebenzi owayesakuba PHS, ubalisa intatheli malunga phando; kwaye cinezela waphula ibali |
| 1972 | EMerika ibamba zimvo kwi ukulinga zabantu, kuquka Tuskegee Study |
| 1973 | Urhulumente iphela ngokusesikweni isifundo egunyazisa unyango abasindileyo |
| 1997 | US uMongameli Bill Clinton licela esidlangalaleni ngokusesikweni iSifundo Tuskegee |
Amaxhoba yolu phando ibandakanya kungekuphela nje amadoda 399, kodwa iintsapho zabo: abafazi ubuncinane 22, 17 Abantwana, kunye nabazukulwana 2 kunye negcushuwa basenokuba losulelwa sisifo ngenxa ukurhoxisa unyango (Yoon 1997) . Ngaphezu koko, umonakalo owenziwe isifundo waqhubeka ixesha elide emva kokuba luphelile. Isifundo-sizathu-mthetho zanciphayo intembeko ukuba baseMerika Afrika kwafuneka ekuhlaleni zonyango, ukuba ukhukuliseko sokukholosa osenokuba kwakhokelela Afrika-Merika ukuphepha unyango ukuba determent impilo yabo (Alsan and Wanamaker 2016) . Ngaphezu koko, ukungabikho trust zenza iinzame ukunyanga i-HIV / AIDS kwi-1980 kunye 90s (Jones 1993, Ch. 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, ekhawulelana Tuskegee Gcushuwa Study nezinye ezi iintsilelo ngokweenqobo ezisesikweni ngokuthi abaphandi, le Congress US wadala iKomishoni yeSizwe yokuKhuselwa of Subjects Human of Biomedical nezokuziphatha Uphando umsebenzi ikomiti ukuphuhlisa ngokwemigaqo esesikweni lophando elibandakanya izifundo zabantu. Emva kweminyaka emine yokuhlangana kwi-Belmont Iziko leNkomfa, iqela wavelisa Report Belmont, uxwebhu kwavela kodwa enamandla ukuba uye waba negalelo elikhulu zombini kwiingxoxo abstract kwi Bioethics kunye nendlela ngemihla uphando.
INgxelo Belmont amacandelo amathathu. Yokuqala lama-Imida Phakathi Practice noPhando-Report Belmont imisa purview yayo. Ngokukodwa, oko umyilim umahluko phakathi kophando, nto leyo ifuna ukwazi generalizable, afeze, ebandakanya unyango ngemihla kunye nemisebenzi. Ukongeza apho, zikhalazela ukuba imigaqo yokuziphatha iNgxelo Belmont isicelo kuphela uphando. Kuxoxiwe ukuba oku umahluko phakathi kophando kunye nendlela enye indlela iNgxelo Belmont na Misfit kuphando zentlalo kweminyaka digital (Metcalf and Crawford 2016; boyd 2016) .
Amalungu yesibini neyesithathu iNgxelo Belmont walala imigaqo-Ukuhlonela ezintathu ezisesikweni Abantu; Beneficence; kwaye Justice-kwaye uchaze ukuba ingaba le migaqo unokusetyenziswa ukwenza uphando. Ezi zizikhokelo ukuba ichazwe ngokwenkcukacha okungakumbi kwisahluko.
INgxelo Belmont ubeka iinjongo ebanzi, kodwa hayi uxwebhu ezinokuthi ngokulula kusetyenziswa ukongamela imisebenzi yemihla ngemihla. Ngoko ke, uRhulumente US kudale iseti imimiselo ukuba ibizwa ekudla ngokuba nguMthetho Common (igama yabo esemthethweni Title 45 Code of Regulations Federal, Icandelo 46, Subparts A - D) (Porter and Koski 2008) . Le mimiselo achaza inkqubo yokuphonononga, ukwamkelwa, nokongamela uphando, kwaye leyo imimiselo Institutional Review (IRBs) uxanduva ukunyanzelisa. Ukuze uqonde umahluko phakathi iNgxelo Belmont kunye Rule Common, cinga axoxe ngendlela nganye esivumelwano: iNgxelo Belmont ichaza izizathu bulumko ukuze lwemvumelwano eyazisiweyo kwaye iimpawu ngokubanzi ukuba uza kumela imvume oyinyaniso kwaziswa ngexesha Rule Common udwelisa ezisibhozo ezifunekayo ezintandathu optional iingxenye ezilungiselelwe loluxwebhu lwemvumelwano eyazisiweyo. Ngokomthetho, i Rule Common elawula phantse yonke uphando elifumana inkxaso evela US Government. Ngaphezu koko, amaziko ezininzi ezifumana inkxaso-mali evela US Government isicelo ngokokuqhelekileyo le Rule Common bonke uphando kwenzeka ngelo iziko, kungakhathaliseki ukuba umthombo mali. Kodwa ke, le Rule Common alisebenzi ngokuzenzekelayo kwiinkampani ukuba abafumani mali kuphando evela US Government.
Ndicinga ukuba phantse bonke abaphandi intlonelo iinjongo ebanzi yophando ezisesikweni njengoko ichazwe kwiNgxelo Belmont, kodwa kukho ukruqukile ngokubanzi kunye Rule Common kwaye inkqubo yokusebenza IRBs (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Ukuze icace, abo amadlala IRBs kungekhona yokuziphatha. Kunoko, bakholelwa ukuba inkqubo ekhoyo akuthethi abethe ulingano olufanelekileyo okanye angafikelela iinjongo zayo ngokusebenzisa ezinye iindlela. Esi sahluko ke, uya kuthatha ezi IRBs njengoko elinikiweyo. Ukuba ngaba kufuneka balandele imithetho ye IRB, ngoko kuzilandela. Noko ke, kukhuthaza ukuba bethathe indlela imigaqo-esekelwe xa kuqwalaselwa zokuziphatha zophando lwakho.
Le imvelaphi ngokufutshane kakhulu ishwankathela indlela Ukufika kwethu inkqubo imithetho-based ngokutsha IRB eUnited States. Xa kuqwalaselwa iNgxelo Belmont kunye Rule Common namhlanje, sifanele sikhumbule ukuba wadalwa ngexesha elahlukileyo yaye-kakhulu sandule-ophendula iingxaki elo xesha, kwi iintanda ingakumbi yezonyango ngexesha nasemva leMfazwe yeSibini yeHlabathi (Beauchamp 2011) .
Ukongeza iinzame yokuziphatha zizazinzulu zonyango nezokuziphatha ukudala iikhowudi yokuziphatha, kukho kwakhona ezincinane ngaphantsi kakuhle imizamo eyaziwa zizazinzulu computer. Eneneni, abaphandi sokuqala ukuphelelwa mingeni yokuziphatha wadalwa luphando yobudala digital ingabi ntle; ke oosonzululwazi computer, ngokukodwa abaphandi ngonqabiseko computer. Ngexesha 1990 kunye kowama-2000 abaphandi zokhuseleko computer laqhuba iqela lezifundo yokuziphatha ethandabuzekayo ukuba abandakanyekayo izinto ezifana kokuthatha ziibotnet kwaye kusiko namawakawaka iikhompyutha anamagama agqithisiweyo buthathaka (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Ukuphendula ezi zifundo, i US Government-ngokukhethekileyo laseMerika iSebe Security-udale uthumo blue-iribhoni ukubhala lokukhokela emasiwulandele ukuze uphando olubandakanya ulwazi nonxibelelwano (ICT). Iziphumo yoku yaba iNgxelo Menlo (Dittrich, Kenneally, and others 2011) . Nangona iinkxalabo abaphandi zokhuseleko lezekhompuyutha ncam efanayo abaphandi zentlalo, iNgxelo Menlo sinezifundo ezintathu ezibalulekileyo kubaphandi zentlalo.
Okokuqala, iNgxelo Menlo iqinisekisa ezintathu Belmont imigaqo-Ukuhlonela Abantu, Beneficence, kwaye Justice-kwaye idibanisa umgaqo sesine: Intlonelo Law and Public Inzala. Ndachaza lo mgaqo yesine nendlela kufuneka kusetyenziswa kuphando zentlalo kwisahluko eziphambili (Icandelo 6.4.4).
Okwesibini, iNgxelo Menlo ikhwelo abaphandi ukuba zizame ukwenza ngaphezu nkcazelo emnxinwa "lophando elibandakanya izifundo zabantu" ukusuka Ingxelo Belmont ukuba kuyingcamango jikelele ngakumbi "uphando izakhono-ezintlungwini." Mida somxholo zeNgxelo Belmont na kuboniswe kakuhle elithile. Ezi IRBs e Princeton Georgia Tech walawula ukuba elithile ukuba "uphando ezibandakanya kwizifundo zabantu," ngoko ke asikho phantsi koqwalaselo ngokutsha phantsi Rule Common. Nangona kunjalo, elithile yacaca izakhono-endikutyayo; phantse ibe maxongo, elithile ibanako kubangela abantu abamsulwa ukuba avalelwe ngoorhulumente resistance. A iindlela nemigaqo-esekelwe kuthetha ukuba abaphandi kufuneka Asinakukufihla ngasemva emxinwa, kwenkcazelo yomthetho "lophando elibandakanya izifundo zabantu," nokuba IRBs kuvumela oko. Kunoko, kufuneka amkele kuyingcamango jikelele ngakumbi "uphando kunye oluntu-usenzakalisa nokuba 'yaye kufuneka phantsi kwakhe zonke yophando lwabo yoluntu-kokuzenzakalisa ekuqhutyeni ingqalelo yokuziphatha.
Okwesithathu, iNgxelo Menlo ikhwelo abaphandi ukwandisa abachaphazelekayo ukuba ingqalelo xa kusetyenziswa imigaqo Belmont. Njengoko uphando mayisuswe singummandla eyahlukileyo ubomi into lamakhonkco ngakumbi Imisebenzi yemihla-ngemihla, ingqwalasela yokuziphatha kufuneka yandiswe ngaphaya nxaxheba ezithile sophado ukuquka non-nxaxheba kunye nokusingqongileyo apho uphando kwenzeka. Ngamanye amazwi, iNgxelo Menlo ikhwelo abaphandi ukwandisa intsimi yabo yokuziphatha lwembono ngaphaya nje nxaxheba yabo.
Esi sihlomelo imbali inika ngokufutshane kakhulu yeenqobo uphando kwinzululwazi kwezentlalo yezonyango, ngokunjalo kwinzululwazi computer. Kuba unyango ubude incwadi yokuziphatha uphando kwinzululwazi yezonyango, bona Emanuel et al. (2008) okanye Beauchamp and Childress (2012) .
