I-appendix ye Historical

Noma nini lapho kuxoxwa kwesimilo ucwaningo kudingeka ukuba bavume ukuthi, esikhathini esidlule, abacwaningi baye benza izinto netintfo letimbi kakhulu egameni yesayensi. Enye yezinto awful kakhulu kwaba Tuskegee ugcunsula Study. Ngo-1932, abacwaningi kusukela US Public Health Service (PHS) wabhalisa amadoda angaba ngu-400 black utheleleke nge ugcunsula esifundweni ukuqapha yemiphumela yokugula. Laba bantu 'babephendula ukubuthwa endaweni ezungeze Tuskegee, Alabama. Kusukela ekuqaleni isifundo non-ezelaphayo; wayeklanyelwe nje ukubhala umlando lesi sifo ansundu. Abahlanganyeli bakhohliseka ebabuza cwaningo-batshelwa ukuthi kwaba isifundo 'legazi ezimbi "-futhi they yayenziwa ukwelashwa yamanga futhi ungasizi, yize ugcunsula iyisifo ezibulalayo. Njengoba isifundo siqhubeka, zokwelapha eziphephile futhi eziphumelelayo for nogcunsula ezakhiwa, kodwa abacwaningi ngenkuthalo wangenela wakuvimba abawugijimayo zithole imithi kwenye indawo. Ngokwesibonelo, phakathi neMpi Yezwe II ucwaningo ithimba esethole okusalungiswa deferments bonke abantu kulolu cwaningo ukuze avimbele impatho amadoda ngabe ngitholile kwadingeka bangena Armed Forces. Abacwaningi waqhubeka ekhohlisa iqhaza wayiziba banakekele iminyaka engu-40. Ucwaningo kwaba deathwatch oneminyaka engu-40.

I Tuskegee ugcunsula ISifundo zenzeka kokukhuluma ngalezi zimo okungaqeda ukucwasana nokungalingani okukhulu owawuvamile engxenyeni eseningizimu US ngaleso sikhathi. Kodwa, phezu umlando walo oneminyaka engu-40, isifundo abathintekayo inqwaba abacwaningi, kokubili black and white. Futhi, ngaphezu abacwaningi abathintekayo ngqo, abaningi abengeziwe kumelwe ukuba ufunde omunye imibiko 15 we Ucwaningo olushicilelwe ku- izincwadi zezokwelapha ezisekelwe ekwazisweni (Heller 1972) . Phakathi nawo-1960-ngemva kweminyaka engu-30 esifundweni eqala-yini isisebenzi PHS egama layo uZweli Buxtun wagqugquzela ngaphakathi PHS sokuba aqede isifundo, okuyinto yena kubhekwe ngokokuziphatha njengento embi. Ekuphenduleni Buxtun, ngo-1969 i-PHS wahlela ukuba kube panel ukuba wenze ukubukezwa okuphelele zesimilo kwesifundo. Ezishaqisayo, lo zesimilo ukubuyekeza panel wanquma ukuthi abacwaningi kufanele uqhubeke ukubamba ukwelashwa amadoda onegciwane. Phakathi ezingxoxweni, elinye ilungu iphaneli ngisho waphawula: "Awusoze esinye isifundo kanje; ngokunenzuzo " (Brandt 1978) . I zonke panel emhlophe, okwakubekelwa ikakhulu yakhiwa odokotela, wenza unqume ukuthi uhlobo oluthile emvume unolwazi kufanele kuluthola. Kodwa, i-panel wahlulela babantu bathola ukuthi abakwazi ukuletha kwemvume unolwazi ngenxa yobudala babo kanye nezinga eliphansi lemfundo. Amajaji Kunconywa, Ngakho-ke, ukuthi abacwaningi zithola "emvume unolwazi ngokwesivumelwano" kusukela nabezempilo zendawo. Ngakho, ngisho nangemva kokuba i ukubuyekeza egcwele zokuziphatha, nokugodlwa ukunakekelwa okuqhubekayo. Ekugcineni, uRobert Buxtun wathatha indaba intatheli, futhi ngo-1972, uJean uHeller Wabhala uchungechunge lwezinsiza-athikili yeliphephandzaba adalula isifundo emhlabeni. Kwaba ngemva okwandile ukucasula umphakathi ukuthi isifundo wagcina baphela kanye nokunakekelwa lanikezwa amadoda ababesindile.

Izisulu kulolu cwaningo akuhlanganisi nje madoda 399, kodwa futhi ngemindeni yawo: nabafazi lokungenani 22, nezingane 17, futhi 2 nabazukulu nge ugcunsula kungenzeka isifo ngenxa ye Ukugodla ukwelashwa (Yoon 1997) . Ngaphezu kwalokho, umonakalo obangelwa isifundo sasiqhubeka isikhathi eside ngemva kokuba yaphela. Ucwaningo-anesizathu-bancipha trust African baseMelika kwadingeka kwezokwelapha, i nokuguguleka komhlabathi trust kungenzeka ukuthi kwaholela African-Americans ukugwema ukunakekelwa kwezokwelapha kuya determent impilo yabo (Alsan and Wanamaker 2016) . Ngaphezu kwalokho, lo ukungalethembi ingathiyeki imizamo ukwelapha i-HIV / AIDS e-1980 kanye 90 (Jones 1993, Ch. 14) .

Nakuba kunzima ukuzibona ngeso lengqondo ucwaningo ezihlasimulisa umzimba kanjalo okwenzekayo namuhla, ngicabanga kukhona izifundo ezintathu ezibalulekile Tuskegee ugcunsula Study for abantu ucwaningo emphakathini yobudala digital. Okokuqala, sisikhumbuza ukuthi kukhona abanye izifundo ukuthi umane akufanele kwenzeke. Okwesibili, lisibonisa ukuthi ucwaningo ungakulimaza hhayi nje ababambiqhaza, kodwa futhi imindeni yabo kanye yonke imiphakathi esikhathini eside ngemva kokuba ucwaningo seluphelile. Ekugcineni, kubonisa ukuthi abacwaningi ungenza izinqumo esabekayo zokuziphatha. Empeleni, ngicabanga ukuthi kufanele ntombazane abanye ngokwesaba abacwaningi namuhla ukuthi abantu abaningi kangaka abathintekayo kulolu cwaningo wenza izinqumo ezinjalo angathandeki enkathini ethile enjalo eside. Futhi, ngeshwa, Tuskegee neze eziyingqayizivele; kwakukhona nezinye izibonelo yocwaningo eziyinkinga social and medical phakathi nale nkathi (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .

Ngo-1974, lapho ephendula Tuskegee ugcunsula Study lezi okunye ukwehluleka zokuhle abacwaningi, US Congress wadala Commission National for Protection of Kwezikhonzi Engumuntu Biomedical kanye bokuziphatha Ucwaningo Ijube ikomidi ukuthuthukisa imihlahlandlela sokuziphatha ucwaningo ehilela izikhonzi womuntu. Ngemva kweminyaka emine emhlanganweni Belmont Conference Center, leli qembu zaveza Belmont Report, idokhumenti libe lincane kodwa obunamandla bokuthi uye waba nethonya elikhulu kokubili mpikiswano abstract in sezimiso kuso nokusenza umkhuba kwansuku yocwaningo.

I Belmont Umbiko has izigaba ezintathu. In the yokuqala esigabeni-imingcele ephakathi Practice Nocwaningo-noMbiko Belmont ubeka purview yayo. Ikakhulu, kusekela umahluko phakathi ucwaningo, elifuna ulwazi generalizable, futhi umkhuba, okuhlanganisa ukwelashwa kwansuku. Ngaphezu kwalokho, it uthi nezimiso zokuziphatha uMbiko Belmont of zisebenza kuphela ucwaningo. Kuye wagomela ukuthi lokhu umahluko okhona phakathi ucwaningo kanye practice enye indlela uMbiko Belmont kuyinto misfit nocwaningo yezenhlalakahle age digital (Metcalf and Crawford 2016; boyd 2016) .

Izingxenye uMbiko Belmont wesibili nowesithathu babeka izimiso-Ukuhlonipha ezintathu sokuziphatha Persons; Beneficence; kanye Justice-futhi uchaze ukuthi lezi zimiso singasetshenziswa ucwaningo practice. Yilezi izimiso ukuthi mina kuchazwe kabanzi ngayo esahlukweni.

I Belmont Umbiko Uzibekela imigomo ebanzi, kodwa akuyona incwadi kungenziwa kalula esetshenziswa ukuba engamele imisebenzi yansuku zonke. Ngakho-ke, i-US Uhulumeni wadala isethi ziqondiso ukuthi basuke colloquially esibizwa ngokuthi uMthetho Common (igama yabo esemthethweni kuyinto Isihloko 45 Code of Federal Regulations, Ingxenye 46, Subparts A - D) (Porter and Koski 2008) . Lezi ziqondiso ukuchaza inqubo kokubuyekeza, ngikwamukela, futhi yengamele ucwaningo, futhi yiziqondiso Institutional Review Boards (IRBs) Akhethelwe ngokuphoqelela. Ukuze siqonde umahluko phakathi Umbiko Belmont kanye noMthetho Ovamile, cabangela indlela ngayinye sidingida imvume unolwazi: uMbiko Belmont sichaza izizathu yefilosofi for imvume unolwazi nokubamba izici ebanzi lungamelela imvume weqiniso unolwazi kanti noMthetho Ovamile libala eziyisishiyagalombili edingekayo anamathandathu ozikhethela izakhi Amaphepha emvume unolwazi. Ngokomthetho, leli noMthetho Ovamile olawula cishe bonke ucwaningo esithola uxhaso US Uhulumeni. Ngaphezu kwalokho, ezikhungweni eziningi ezithola uxhaso US Uhulumeni ngokuvamile ukusebenzisa noMthetho Ovamile kubo bonke ucwaningo okwenzekayo ngaleso isikhungo, kungakhathaliseki umthombo ngezimali. Kodwa, i-noMthetho Ovamile akusho ngokuzenzakalelayo izicelo izinkampani ukuthi musa oyitholayo ucwaningo kusukela US Uhulumeni.

Ngicabanga ukuthi cishe bonke abacwaningi sihloniphe imigomo ebanzi yocwaningo zesimilo njengoba uvezwe kulo Report Belmont, kodwa kukhona kuyacasula okusakazekile noMthetho Common kanye inqubo esebenza IRBs (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Ukuze kucace, labo critical of IRBs kakumelananga izimiso zokuhle. Kunalokho, bacabanga ukuthi isimiso samanje akusho ashaye i balance ezifanele noma ongawufinyelela kangcono imigomo yayo ngokusebenzisa ezinye izindlela. Nokho, Lesisahluko, uzakutjheja IRBs njengombana sinikelwa. Uma kudingeka ukuba balandele imithetho i IRB, khona-ke kufanele abazilandelayo. Nokho, ngingathanda ukukhuthaza ukuba ubuye uthathe ndlela izimiso ezisekelwe lapho sicabangela izimiso ucwaningo lwakho.

Lokhu kubeka ngamafuphi background kancane indlela sifika uhlelo imithetho-based ukubuyekeza IRB e-United States. Lapho sicabangela Umbiko Belmont kanye noMthetho Ovamile namuhla, kufanele sikhumbule kutsi babedalelwe enkathini ehlukile kweyazo futhi base-ngempela beveza-kokuphendula ezinkingeni ngaleso sikhathi, ngo-ezibhodlokile ikakhulu izimiso zokuhle wezokwelapha ngesikhathi nangemva kwempi yezwe yesibili (Beauchamp 2011) .

Ngaphezu kwemizamo zokuhle nososayensi bezokwelapha nesimilo ukudala amakhodi zesimilo, kwakukhona ezincane kanye kangako imizamo aziwa ososayensi computer. Eqinisweni, abacwaningi kuqala ukuze iyangena zezinselele zezindinganiso adalwe ucwaningo yobudala digital kwakungewona ososayensi bezenhlalo; kade ososayensi computer, ikakhulukazi abacwaningi ngokulondeka computer. Phakathi 1990 futhi kowezi-2000 abacwaningi nokuvikeleka computer olwenziwe inani lezifundo uphula izimiso ukuthi yayihilela izinto efana kokuthatha phezu botnets nokugenca zibe izinkulungwane computer ne amaphasiwedi ezibuthakathaka (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Ekuphenduleni lezi zifundo, US Uhulumeni-ikakhulukazi uMnyango Homeland Security-wadala ikhomishana blue-Ribbon ukuze ubhale guiding uhlaka sokuziphatha ucwaningo ehilela ulwazi nobuchwepheshe bezokuxhumana (ICT). Imiphumela yalesi umzamo kwaba Umbiko Menlo (Dittrich, Kenneally, and others 2011) . Nakuba ukukhathazeka labacwaningi security computer akuzona nse abacwaningi social, uMbiko Menlo inikeza izifundo ezintathu ezibalulekile kubacwaningi social.

Okokuqala, uMbiko Menlo isamukele ezintathu Belmont izimiso-Inhlonipho Persons, Beneficence, futhi Justice-futhi unezela isimiso wesine: ezihlonipha umthetho ne- Public Interest. Ngachaza lesi simiso lesine futhi kanjani kufanele usetshenziswe ucwaningo emphakathini isahluko main (Isigaba 6.4.4).

Okwesibili, uMbiko Menlo ubiza on abacwaningi ukudlulela ngale incazelo emincane "ucwaningo ezihilela izikhonzi womuntu" kusukela Bika Belmont ukuze umqondo more jikelele we "ucwaningo nge okungenziwa ngabantu-ukuzilimaza ngamabomu." Lo ukulinganiselwa ukwenaba uMbiko Belmont lokuhlaba lokuthi kahle by Encore. I IRBs ePrinceton futhi Georgia Tech yakhipha isinqumo sokuthi Encore wayengeyena "ucwaningo ezihilela izikhonzi womuntu," futhi ngenxa yalokho ekubuyekezweni ngaphansi noMthetho Ovamile. Nokho, Encore has ngokucacile ukubaluleka kwabantu-ukuzilimaza ngamabomu; at yayo extreme kakhulu, Encore engase kuholele abantu abangenacala kokuba babafaka ohulumeni ingcindezelo. A kusondela based izimiso-Kusho ukuthi abacwaningi akufanele ukufihla ngemuva emincane, definition esingokomthetho esithi "ucwaningo ezihilela izikhonzi womuntu," ngisho noma IRBs uvumele it. Kunalokho, kufanele bashayele ngokucophelela ukuqonda okwengeziwe jikelele we "ucwaningo nge human-ukuzilimaza ngamabomu abangahle 'futhi kufanele okubeka + zonke yocwaningo lwabo wesintu-ukuzilimaza ngamabomu kokuphakelwa ukucabangela zokuziphatha.

Okwesithathu, uMbiko Menlo ubiza on abacwaningi ukuba bandise abanotho ezibhekwa uma sisebenzisa izimiso Belmont. Njengoba ucwaningo luye bathutha indilinga ehlukile yokuphila nokuthile okwengeziwe setintfo letitfolakala imisebenzi yansuku zonke, kufanele yezakhi zesimilo akhula ngendlela eyayingakaze nje lokubamba iqhaza ocwaningweni ethize yokufaka nabangewona iqhaza imvelo lapho ucwaningo senzeka. Ngamanye amazwi, uMbiko Menlo kudinga ukuba abacwaningi ukuba sikuqonde ensimini yabo zesimilo umbono ngalé nje abahlanganyeli yabo.

Le isithasiselo zomlando inikeza sokubukeza kafushane kakhulu kwesimilo ucwaningo social science yezokwelapha, kanye computer science. Ukuze uthole ukwelashwa incwadi ubude lokuziphatha ucwaningo emkhakheni wezokwelapha, bheka Emanuel et al. (2008) noma Beauchamp and Childress (2012) .