Historical okuwedzera
Izvi zvinyorwa zvezvakaitika kare zvinopa kuongorora kwenguva pfupi kwemaitiro ekutsvakurudza muUnited States.
Kwose kukurukurirana kwemitemo yekutsvakurudza kunoda kubvuma kuti, munguva yakapfuura, vatsvakurudzi vakaita zvinhu zvinotyisa muzita resainzi. Chimwe chezvinhu zvakanyanya pane izvi ndezveChidzidzo cheTuskegee Syphilis (tafura 6.4). Muna 1932, vatsvakurudzi vanobva kuUnited States Public Health Service (PHS) vakanyoresa varume mazana masere vakavhiringidzwa nehupiritsi mukuongorora kuti vaone migumisiro yechirwere. Varume ava vakanyorerwa kubva kunharaunda yakapoteredza Tuskegee, Alabama. Kubvira pakutanga chidzidzo chaiva nontherapeutic; yakanga yakagadzirirwa kungorondedzera nhoroondo yechirwere muvanhu vasiri varume. Vadzidzi vacho vakanyengerwa pamusoro pemhando yekudzidza-vakaudzwa kuti kwaive kuongorora "ropa rakaipa" -uye vakapiwa manyepo uye asingabatsiri kurapwa, kunyange zvazvo chirwere chechirwere chiri chirwere chinouraya. Sezvo chidzidzo ichi chichienderera mberi, kurapa kwakachengeteka uye kwakagadzirisa kwechivifisi kwakagadzirwa, asi vatsvakurudzi vakapindira kuti vadzivise vatori vechikamu kuti vawane kurapwa kune imwe nzvimbo. Somuenzaniso, munguva yeHondo Yenyika II, boka rekutsvakurudza rakachengetedza zvinyorwa zvinyorwa zvevarume vose mukudzidza kuitira kudzivirira kurapwa kwevarume vaizogamuchira kana vakapinda mauto ehondo. Vatsvakurudzi vakaramba vachinyengedza vateereri uye vachiramba vachiva nehanya kwemakore makumi mana.
Chidzidzo cheTuskegee Syphilis Chidzidzo chakaitika pamusoro pezvakaitika kare zvechisarura uye kusaenzana kwakanyanya kwaiwanzoitika kumaodzanyemba kweUnited States panguva iyoyo. Asi, pamusoro pemakore aro makumi mana emakore, chidzidzo chacho chakabatanidza vazhinji vevanotsvakurudza, vose vatsvuku nevachena. Uye, kunze kwevanotsvakurudza zvakabatanidzwa zvakananga, vazhinji vakawanda vanofanira kunge vakaverenga imwe yemashoko gumi nemashanu edzidzo yakabudiswa mumabhuku ekurapa (Heller 1972) . Pakati pema1960-makore anenge 30 mushure mekunge chidzidzo chacho chakatanga-mushandi weFS ainzi Robert Buxtun akatanga kusvitsa mukati meFS kuti apedze kudzidza, izvo zvaaifunga kuti tsika dzakashata. Mukupindura kuna Buxtun, muna 1969, iyo PHS yakagadzira boka rekuti riite chiongorudzo chakazara chetsika chekudzidza. Zvinoshamisika, maitiro ekuongorora mapeji ezvakanaka akasarudza kuti vatsvakurudzi vanofanira kuramba vachirega kurapwa kubva kune varume vane utachiona. Pakati pekufunga, imwe nhengo yeboka racho yakatoti: "Hauzombovi nedzimwe dzidzo yakafanana neizvi; shandisa zvaro " (Brandt 1978) . Zvose-mavara machena, ayo ainyanya kuumbwa navanachiremba, akasarudza kuti imwe nzira yemvumo yakagadziriswa inofanira kuwanikwa. Asi boka racho rakatonga kuti varume pachavo havagone kupa ruzivo rwakavhiringidzirwa nekuda kwezera ravo uye nehutsika hwehutano. Saka boka racho rakakurudzira, saka, kuti vanotsvakurudza vanowana "rubvumirano rwakavimbiswa ruzivo" kubva kuvakuru vezvechiremba vemo. Saka, kunyange mushure mekudzokorora kwakakwana kwehutsika, kubvisa kuchengetwa kwakaenderera mberi. Pakupedzisira, Buxtun akatora nyaya yacho kune mutori wenhau, uye, muna 1972, Jean Heller akanyorera mutsara wezvinyorwa zvepepanhau zvakabudisa chidzidzo kunyika. Yakanga ichangobva kupararira kudengenyeka kwevanhu kuti chidzidzo chakanga chapera uye kutarisirwa kwakapiwa kuvarume vakanga vapona.
| Musi | Chiitiko |
|---|---|
| 1932 | Vanenge mazana mana varume vane syphilis vanyoresa muchidzidzo; ivo havasi kuzivikanwa nezvemhando yekutsvakurudza |
| 1937-38 | I-PHS inotumira zviyero zvekutengesa kushandiswa kunharaunda, asi kurapwa kwakachengetwa kune varume vari mukudzidza |
| 1942-43 | Kuti vanhu vadzivirire mushure mekugamuchira kurapwa, PHS inopindira kuvadzivisa kuti vasanyorwa kuWWII |
| 1950s | Penicillin inowanikwa yakawanda uye inobudirira kurapwa kwechirwere; varume vari muchidzidzo havachiri kurapwa (Brandt 1978) |
| 1969 | I-PHS inobvunzurudza chimiro chetsika chekudzidza; boka racho rinokurudzira kuti chidzidzo chienderere mberi |
| 1972 | Peter Buxtun, aimbova mushandi weHS, anoudza mutori wenhau pamusoro pekudzidza, uye mhizha inopedzisa nyaya yacho |
| 1972 | Sangano reUnited States rinopikisa kunzwa pamusoro pekuedza kwevanhu, kusanganisira Tuskegee Yokudzidza |
| 1973 | Hurumende inogumisa zvepamutemo kudzidza uye inogamuchira kurapwa kwevanopona |
| 1997 | Mutungamiri weUnited States Bill Clinton pachena uye akareurura zviri pamutemo nokuda kweChidzidzo cheTuskegee |
Vavengi vekudzidza uku havana kubatanidza chete varume 399, asiwo mhuri dzavo: vasikana 22, vana 17, uye vazukuru vaviri vane chirwere chinonzi syphilis vangave vakabata chirwere ichi nekuda kwekuregererwa kwehutano (Yoon 1997) . Uyezve, kukanganisa kwakakonzerwa nekudzidza kwakaenderera mberi kwenguva refu mushure mokunge wapera. Kudzidza-kwakarurama-kwakaderedza kuvimba kwevanhu veAfrica muAradic, kuvhudzirwa mukutenda kunogona kunge kwakaita kuti veAfrica vemuAmerica vasave kurapwa kunokanganisa utano hwavo (Alsan and Wanamaker 2016) . Uyezve, kushayikwa kwechivimbo kwakadzivisa kuedza kubata chirwere cheHIV / AIDS muma1980 ne90 (Jones 1993, chap. 14) .
Kunyange zvazvo zvakaoma kufungidzira tsvakurudzo saka dzinotyisa kuitika nhasi, ndinofunga pane zvidzidzo zvitatu zvinokosha kubva Tuskegee njovhera Study vanhu kuitisa munzanga tsvakurudzo ari digitaalinen zera. Kutanga, chinotiyeuchidza kuti pane zvimwe zvidzidzo kuti nyore hazvifaniri kuitika. Chechipiri, rinotiratidza kuti kutsvakurudza anogona kukuvadza kwete vechikamu asiwo nemunharaunda dzavo yose refu pashure rapera pakutsvakurudza. Pakupedzisira, zvinoratidza kuti vaongorori anogona kuita zvinotyisa zvisarudzo zvetsika. Kutaura zvazviri, ndinofunga kuti anofanira kunyengedza vamwe kutya vatsvakurudzi nhasi kuti vanhu vakawanda kudaro vanobatanidzwa munyaya ino akaita izvozvo hwokutambura zvisarudzo pamusoro zvakadaro kwenguva yakareba. Uye, zvinosuwisa, Tuskegee hazvisi akasiyana; paiva nezvimwe mienzaniso inoverengeka matambudziko evanhu uye zvokurapa kutsvakurudza panguva yaitonga ichi (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .
Muna 1974, mukupindura kweTuskegee Syphilis Yokudzidza uye izvi zvimwe kukanganisa kwetsika nevanotsvakurudza, US Congress yakasarudza National Commission yeKuchengetedzwa Kwevanhu Kuongorora Biomedical and Behavioral Research uye yakaronga kuti iite hurumende mitemo yekutsvakurudza inosanganisira nyaya dzevanhu. Pashure pemakore mana emusangano paBelmont Conference Centre, boka racho rakabudisa iBelmont Report , mushumo wakave wakakonzera zvakakosha pamakakatanwa ose ezvinyorwa muhupenyu hwehupenyu uye zuva rega rekutsvakurudza.
Bhuku reBelmont rine zvikamu zvitatu. Muchikamu chekutanga-Pakati Pezvidzidzo neKutsvakurudza-mushumo unobudisa pachena. Kunyanya, inotaurira kusiyanisa pakati pekutsvakurudza , inotsvaka ruzivo rwakakwana, nekuita , izvo zvinosanganisira kurapa kwezuva nezuva nemabasa. Uyezve, inotaura kuti maitiro ehutsika eBelmont Report anoshanda chete kuongororo. Zvinenge zvichitaurirana kuti izvi zvakasiyana pakati pekutsvakurudza nekuita ndeimwe nzira iyo Belmont Report isingakodzerwe nayo nekutsvakurudza kwevanhu munharaunda ye digital (Metcalf and Crawford 2016; boyd 2016) .
Chikamu chechipiri nechetatu cheBelmont Report chakaronga mitemo mitatu yekuremekedza-Kuremekedza Vanhu; Beneficence; uye Kururamisira-uye kurondedzera kuti mazano aya anogona kushandiswa sei pakutsvakurudza. Iyi ndiyo mitemo yandakatsanangura zvakadzama mumagwaro makuru echitsauko chino.
Bhuku reBelmont rinotaura zvinangwa zvakakura, asi harisi dhiyabhorosi rinogona kushandiswa nyore nyore kutarisira mabasa ezuva nezuva. Nokudaro, Hurumende yeUnited States yakagadzira mitezo yemitemo iyo inonzi colloquially inonzi Common Rule (zita ravo rezvemitemo ndiro Title 45 Code of Federal Regulations, Chikamu 46, Chikamu AD) (Porter and Koski 2008) . Iyi mitemo inotsanangura nzira yekuongorora, kubvumirana, uye kutarisira tsvakurudzo, uye ndiyo mitemo iyo mapurisa ekuongorora zvikoro (IRBs) ane basa rekusimudzira. Kuti unzwisise musiyano pakati peBelmont Report uye Common Rule, funga kuti umwe neumwe anokurukura sei kubvumirana kwakagadziriswa: Bhuku reBelmont rinotsanangura zvikonzero zvouzivi zvekubvumirwa kwakagadziriswa uye huwandu hunhu hunogona kureva kubvumirana kwechokwadi, apo Common Rule inotaura hurairi inotarisirwa uye nhanhatu zvingasarudzwa zvinyorwa zvebvumirano rakabvumirwa runyorwa Nechemitemo, Common Rule inodzora zvinenge zvose zvitsvakurudzo zvinogamuchira mari kubva kuhurumende yeUnited States. Uyezve, masangano akawanda anogamuchira mari kubva kuhurumende yeUnited States anowanzoshandisa Common Rule kune zvese zvinotsvakurudza zvinowanikwa panzvimbo iyoyo, pasinei nemari yekuwana mari. Asi Common Rule haisi kungoshanda kune makambani asingagamuchiri kutsvakurudza mari kubva kuhurumende yeUnited States.
Ndinofunga kuti vanenge vese vatsvakurudzi vanoremekedza zvinangwa zvakakura zvekutsvakurudza kwehutano sezvinoratidzwa muBelmont Report, asi kune kupararira kune Common Common uye nzira yekushanda ne IRBs (Schrag 2010, 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Kuti zvive zvakajeka, avo vanotsoropodza IRBs hazvisi kupesana nemitemo. Pane kudaro, vanotenda kuti hurongwa huripo hunoita kuti hurumende yakakodzera kana kuti inogona kubudirira kubudirira kuburikidza nedzimwe nzira. Ini, zvakadaro, ndichatora IRB idzi sezvakapiwa. Kana iwe uchida kutevera mitemo yeRRB, iwe unofanira kuzviita. Zvisinei, ndinokukurudzira iwe zvakare kutora mazano-based based approach paunofunga nezvemaitiro ekutsvakurudza kwako.
Iyi mhedziso inopfupikisa kuti takasvika sei pamitemo-based system yekuongorora kweRRB muUnited States. Apo patinofunga nezveBelmont Report uye Common Rule nhasi, tinofanira kuyeuka kuti dzakasikwa panguva yakasiyana uye dzakange-dzakangwara-kupindura matambudziko ezuva iroro, kunyanya kukanganisa mumitemo yezvechiremba panguva uye pashure peHondo Yenyika II (Beauchamp 2011) .
Mukuwedzera pamabasa ekurapa nehutsika masayendisiti ekuumba maitiro emitemo, pakanga pane zviduku uye zvisinganyanyi kuzivikanwa nemasayendisiti masayendisiti. Kutaura zvazviri, vatsvakurudzi vekutanga kuti vashandise mumitemo yehutsika yakagadzirwa nehuwandu-yehutsvakurudzo yekutsvaga yakanga isiri yezvesayenzi masayendisiti: vaiva makombiyuta masayendisiti, kunyanya vanotsvakurudza mumakombiyuta ekuchengetedza Munguva dzema1990 nema2000, vatsvakurudzi vekuchengetedzwa kwemakombiyuta vakaita zvidzidzo zvakasiyana-siyana zvinoshungurudza izvo zvakabatanidza zvinhu zvakadai sokutora mabhota uye kuvhara muzviuru zvemakombiyuta ane zvishoma zvinyorwa pasi (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Mukupindura kune zvidzidzo izvi, hurumende yeUnited States-kunyanya Dhipatimendi rekuchengetedzwa kwemunyika-yakagadzira dare rebhuruu-ribhoni kunyora nhungamiro yehutano hwekutsvakurudza inosanganisira mashoko nehutano hwekutaura (ICT). Mugumisiro wekuedza uku kwaive iyo Menlo Report (Dittrich, Kenneally, and others 2011) . Kunyange zvazvo kunetseka kwevashandi vekuchengetedzwa kwemakombiyuta kwete zvakaenzana neyavo vanoongorora vanhu, Social Menlo inopa zvidzidzo zvitatu zvinokosha kune vatsvakurudzi vevanhu.
Kutanga, iyo Menlo Report inosimbisa zvakare mitemo mitatu yeBelmont-Kuremekedza Vanhu, Kubatsirwa, uye Kururamisira-uye inowedzera chechina: Kuremekedza Mutemo uye Kufarira Kwevanhu . Ndakatsanangura iyi nheyo yechina uye kuti inofanira kushandiswa sei pakutsvakurudza kwevanhu munharaunda huru yechitsauko chino (chikamu 6.4.4).
Chechipiri, inonzi Menlo Report inokurudzira vatsvakurudzi kuti vaende mberi kwechero tsanangudzo shoma ye "tsvakurudzo inosanganisira nyaya dzevanhu" kubva kuBelmont Report kune imwe pfungwa yakawanda ye "tsvakurudzo ine simba revanhu rinokuvadza." Kukanganisa kwehuwandu hweBelmont Report rakaratidzwa zvakajeka neEncore. IRBs kuPrinceton neGeorgia Tech yakaronga kuti Encore yakanga isiri "tsvakurudzo inobatanidza nyaya dzevanhu," uye saka yakanga isingabvumirwi kudzokorora pasi pe Common Rule. Zvisinei, Encore zvakajeka ine simba revanhu-rinokuvadza; panguva yacho yakaipisisa, Encore ingagona kuita kuti vanhu vasina mhaka vaiswe mujeri nehurumende dzinodzvinyirira. Nhungamiro-based approach inoreva kuti vatsvakurudzi havafanire kuvanza mushure mekutaura kwakaderera, kwepamutemo kwe "tsvakurudzo inobatanidza nyaya dzevanhu," kunyange kana IRB dzichibvumira. Pane kudaro, vanofanira kuve nepfungwa yakawanda ye "tsvakurudzo nehuipi hunogona kuvhiringidza vanhu" uye vanofanira kuzviisa pasi pese tsvakurudzo yavo nehuipi hwevanhu-hunokuvadza kugadzirisa tsika.
Chechitatu, inonzi Menlo Report inokumbira vatsvakurudzi kuwedzera avo vanobatana vanofungidzirwa pavanoshandisa mitemo yeBelmont. Sezvo tsvakurudzo yakabva kune imwe nzvimbo yakasiyana yehupenyu kune chimwe chinhu chakanyanyobatanidzwa mumabasa ose ezuva nezuva, maonero ehutano anofanira kuwedzerwa kunze kwevamwe vatsvaga vatsvakurudzo kuti vaise vasina kusarura uye nzvimbo iyo inotsvaga tsvakurudzo. Mune mamwe mazwi, Menlo Report inoda kuti vatsvakurudzi vawedzere mararamiro avo emafungiro ekuona kunze kwevangori vatori vechikamu.
Izvi zvinyorwa zvezvakaitika kare zvakapa kuongorora kwenguva pfupi kwemaitiro ekutsvakurudza mune zvemagariro evanhu uye zvechiremba uye mune kombiyuta yesayenzi. Nokuda kwehurefu-bhuku kurapwa kwemitemo yekutsvakurudza mune sayenzi yezvokurapa, ona Emanuel et al. (2008) kana Beauchamp and Childress (2012) .
