Historical okuwedzera
Chero panokurukurwa kutsvakurudza tsika anofanira kubvuma kuti, kare, vaongorori vakaita yakaipa zvinhu muzita nesayenzi. Chimwe chezvinhu zvikuru kwaiva Tuskegee njovhera Study. Muna 1932, vatsvakurudzi kubva US Public Health Service (PHS) akanyoresa varume vanenge 400 rutema utachiwana njovhera ari kudzidza kuongorora migumisiro chirwere. Varume ava vakanga basa kubva yakapoteredza Tuskegee, Alabama. Kubva pakutanga chidzidzo chacho non-kuchirapa; akasikirwa kungotaura kunyora nhoroondo zvirwere vanhurume dema. Vechikamu vakanyengedzwa pamusoro pezvakaita kudzidza-vakaudzwa kuti kwaiva kudzidza "ropa zvakaipa" -uye vakanga vakapa dzenhema uye sashanda kurapwa, kunyange zvazvo njovhera chirwere chinouraya. Sezvo mberi nekudzidza, vakachengeteka uye inobudirira pakurapa njovhera yakagadzirwa, asi vanotsvakurudza aishingaira akapindira kudzivisa vechikamu kubva kuwana mishonga kumwewo. Somuenzaniso, muHondo Yenyika II pakutsvakurudza chikwata yakasimbiswa ubate deferments vanhu vose vari kudzidza kuitira kudzivisa kurapwa varume vangadai kugamuchira akanga vakapinda Armed Forces. Vatsvakurudzi achinyengera vechikamu uye anovatadzisa hanya kwemakore 40. Kudzidza raiva deathwatch-gore 40.
The Tuskegee njovhera Study kwakaitika pamusoro colour pamusoro rusaruraganda uye hwakanyanya kusaruramisira kuti zvakanga zvakajairika kumaodzanyemba chikamu US panguva. Asi, pamusoro wayo nhoroondo-gore 40, ongororo zvaisanganisira hwakawanda Vatsvakurudzi, zvose dema uye chena. Uye, mukuwedzera kune vaongorori avepo, vakawanda vanofanira kunge verenga chimwe 15 nemishumo pakudzidza yakabudiswa mabhuku ezvokurapa (Heller 1972) . Pakati pezana remakore Kuma1960-anenge makore 30 ari kudzidza akatanga-mumwe PHS mushandi ainzi Robert Buxtun vakatanga kuda mukati PHS kuti agumise kudzidza, izvo aiona tsika kunokukura. Achipindura Buxtun, muna 1969 ivo PHS musangano mumwe remadziro kuita yakakwana yetsika muchidimbu pakudzidza. Nenzira inotyisa, penyaya muchidimbu Panel vakasarudza kuti vanotsvakurudza vanofanira kuramba kunyima kurapwa kubva utachiona varume. Panguva kunzvera, imwe nhengo pemapuranga kunyange nezvemukadzi uyu: "Hamuzombofi mumwe kudzidza seizvi; kukutorerai kwayo " (Brandt 1978) . The zvose emadziro chena, iyo aiwanzogara chinoumbwa vanachiremba, akaita kusarudza kuti rwakati omuzvarirwo kunofanira kuwanikwa. Asi, emadziro Vakatonga vanhu pachavo havagoni kupa omuzvarirwo nemhaka yezera ravo uye pasi azvipire dzidzo. Pemapuranga rakarumbidza Naizvozvo, kuti vaongorori vanogamuchira "kuberekerwa mwana nomumwe omuzvarirwo" kubva omunharaunda zvokurapa namachinda. Saka, kunyange pashure ane zvizere chemufungo review, iyo achinyima yokutarisira mberi. Pakupedzisira, Robert Buxtun akatora nyaya kuti wenhau, uye muna 1972 Jean Heller akanyora dzakatevedzana mumapepanhau kuti akafumura kudzidza kunyika. Yakanga chete pashure kwakapararira ruzhinji kushatirwa kuti kudzidza pakupedzisira rapera uye kutarisira chaipiwa kuna varume vakanga vapona.
| zuva | chiitiko |
|---|---|
| 1932 | anenge varume 400 vane njovhera wakanyoresa kudzidza; havana nezvokufambira yezvakaita tsvakurudzo |
| 1937-38 | PHS anotumira Mobile kurapwa vezvikwata kuti nzvimbo, asi kurapwa ari kundinyima vanhu kudzidza |
| 1942-43 | PHS anopindira kudzivirira vanhu kubva mukutambudzwa vaitorwa kuti WWII kuti kwakavatadzisa pakugamuchira kurapwa |
| 1950s | Penicillin anova yainyanya kuwanika uye inobudirira kurapwa nokuti njovhera; Varume vari vachiri havana kurapwa (Brandt 1978) |
| 1969 | PHS convenes ane chemufungo kuongororwazve kudzidza; emadziro rinokurudzira kuti kudzidza mberi |
| 1972 | Peter Buxtun, aimbova PHS mushandi, anoudza wenhau pamusoro kudzidza; uye tigoshingairira rinovhuna nyaya |
| 1972 | US reSeneti akabata hearings pamusoro kwacho hwevanhu, kusanganisira Tuskegee Study |
| 1973 | Hurumende pamutemo rinoguma kudzidzawo uye authorizes pakurapa vanenge |
| 1997 | US President Bill Clinton pachena uye pamutemo ruregerero nokuda Tuskegee Study |
Vakatambudzwa kudzidza ichi vanosanganisira kwete varume 399, asiwo dzavo: kanenge 22 vakadzi, nevana 17, uye 2 vazukuru vane njovhera kunge vakabatwa chirwere somugumisiro wacho achinyima kurapa (Yoon 1997) . Uyezve, kukuvadza pakudzidza vakaramba refu pashure ndokuguma. Kudzidza-yakarurama-ungaderedza kuvimba kuti African vokuAmerica vaiva mune zvokurapa, imwe kwevhu mune kuvimba kuti angave akatungamirira African muAmerica kudzivisa kurapwa kuti determent utano hwavo (Alsan and Wanamaker 2016) . Uyezve, kushaya kuvimba makavadzivirira kuedza kurapa HIV / AIDS munyika 1980s uye 90s (Jones 1993, Ch. 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, kupindura Tuskegee njovhera Study uye izvi zvimwe nokukundikana yetsika kubudikidza nevatsvakurudzi, US Congress akasika National Commission Chokudzivirira Human Vanotongwa anorapa achishandisa mitemo uye Behavioral Research uye tasked komiti kuva chemufungo nhungamiro yokutsvakurudza zvinobatanidza vanhu vanotongwa. Pashure pemakore mana kumusangano Belmont Conference Center, boka yabudisa Belmont Report, murume mutete asi simba gwaro akava zvikuru kwakabatsira vaviri husingaoneki nharo vari bioethics uye zuva nezuva tsika kutsvakurudza.
The Belmont Report ane zvikamu zvitatu. Muzana rokutanga chikamu-Miganhu Pakati Practice uye Research the Belmont Report rinotaura purview yayo. Kunyanya, izvozvo kwemashoko musiyano tsvakurudzo, inotsvaka generalizable ruzivo, uye tsika, izvo zvinosanganisira hwezuva nezuva kurapwa uye mabasa. Uyezve, zvinoita anoti penyaya misimboti Belmont Report anoshanda chete pakutsvakurudza. Zvave nharo kuti musiyano uyu pakati pakutsvakurudza uye tsika ndiyo nzira kuti Belmont Report ndiye misfit kune evanhu akatsvakurudza digitaalinen zera rimwe (Metcalf and Crawford 2016; boyd 2016) .
Nhengo Belmont Report rechipiri uye rechitatu voisa mitemo-Kuremekedza yetsika matatu Persons; Beneficence; Nokururamisira-uye tsanangura kuti mazano aya angashandiswa pakutsvakurudza tsika. Ndivo misimboti kuti ini akarondedzera zvakadzama muchitsauko.
The Belmont Report anoisa zvinangwa paupamhi, asi haisi gwaro kuti inogona nyore kushandiswa atarisire zuva nezuva mabasa. Naizvozvo, US Hurumende akasika yakatarwa yemirau kuti colloquially inonzi Common Rule (zita ravo yepamutemo riri Title 45 Code of Federal Regulation, Part 46, Subparts A - D) (Porter and Koski 2008) . mirau iyi anotsanangura muitiro nokuda pokuongorora achibvumirana, uye kutarisira kutsvakurudza, uye ivo ndiyo mirau zvechechi Review Boards (IRBs) vari tasked pamwe yatevedzerwa. Kuti tinzwisise musiyano pakati Belmont Report uye Common Rule, funga kuti chimwe nechimwe chichikurukura akaudza Shekemi; uye Belmont Report rinorondedzera zvikonzero ouzivi nokuda omuzvarirwo uye yakafara unhu kuti vaizomiririra wechokwadi omuzvarirwo nepo Common Rule rinotaura misere uye matanhatu Opsioneel zvinhu ane omuzvarirwo gwaro. By mutemo, Yavose Kutonga unodzora anenge zvose tsvakurudzo kuti anogamuchira mari kubva US Government. Uyezve, masangano akawanda kuti vagamuchire mari kubva US Hurumende yemanyorero kushandisa Common Rule nokutsvakurudza zvose zvichiitika panguva kupfungwa, pasinei mari kunobva. Asi, Common Rule haangoerekani kushanda panguva makambani kuti murege kugamuchira tsvakurudzo mari kubva US Government.
Ndinofunga kuti vanotsvakurudza anenge zvose kuremekedza dzakafara zvinangwa pakutsvakurudza yetsika sezviri Belmont Report, asi pane kwakapararira chinetso pamwe Common Rule uye muitiro kushanda IRBs (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Kuva akajeka, avo kushora IRBs havasi pamusoro hwetsika. Asi, ivo vanotenda kuti magetsi hurongwa haasi urove rakakodzera pachiyero kana kuzadzisa zvinangwa zvayo kuburikidza dzimwe nzira nani. Zvisinei, chitsauko chino, achatora IRBs izvi sezvo kupiwa. Kana uri kunodiwa kutevera mitemo ane IRB, unofanira anovatevera. Zvisinei, ndinoda kukurudzira kuti zvakare kutora zvinotaurwa-inobva kusvika apo kufunga nezvetsika pakutsvakurudza kwako.
Izvi kumashure muchidimbu chaizvo muchidimbu sei takasvika mitemo-kwakavakirwa hurongwa IRB ongororo muUnited States. Kana tikafunga Belmont Report uye Common Rule nhasi, tinofanira kuyeuka kuti ravakasikwa nenzira yakasiyana munguva uye vakanga-zvikuru nokuchenjera-kudavira zvinetso iyoyo, kunyanya pakoromoka mune mitemo yokurapa panguva uye mushure Second World War (Beauchamp 2011) .
Kuwedzera chemufungo kuitwa nemasayendisiti zvokurapa uye misikanzwa kusika chemufungo Codes, paivawo maduku uye hainyanyi kuzivikanwa kuitwa nemasayendisiti kombiyuta. Kutaura zvazviri, vanotsvakurudza wokutanga kumhanya kupinda penyaya matambudziko akasikwa digitaalinen zera tsvakurudzo havana pasocial masayendisiti; vakanga masayendisiti kombiyuta, zvakananga vatsvakurudzi vakachengeteka kombiyuta. Panguva kuma1990 uye 2000s kombiyuta nokuchengeteka vaongorori aidzidza nhamba yezvidzidzo tsika dzinobvumira chipatara chinobatsira mibvunzo zvaisanganisira zvinhu zvakafanana nokutora pamusoro botnets uye akagura-gura kupinda zviuru makombiyuta vane simba mavara echivande (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Pakupindura zvidzidzo izvi, US Government-zvakananga weDhipatimendi Kumusha Security-akasikwa mutema-Ribbon basa kunyora chinotungamirira framework yetsika pakutsvakurudza chokuita ruzivo uye yekufambisa (ICT). Zvakabuda ichi nesimba aiva Menlo Report (Dittrich, Kenneally, and others 2011) . Kunyange zvazvo zvinonetsa kombiyuta kuchengeteka Vatsvakurudzi havasi chaizvoizvo kufanana evanhu vatsvakurudzi, ndiye Menlo Report inopa zvidzidzo zvitatu zvinokosha evanhu nevaongorori.
Chokutanga, Menlo Report Unosimbisazve vatatu Belmont zvinotaurwa-Kuremekedza Persons, Beneficence, uye Justice-uye anowedzera mashoko chechina: Kuremekedza Mutemo uye Public Interest. Ini akatsanangura ichi musimboti wechina uye sei inofanira kushandiswa munzanga tsvakurudzo muchitsauko chikuru (Section 6.4.4).
Chechipiri, Menlo Report anodana vanotsvakurudza kuenda mhiri nhete tsanangudzo "tsvakurudzo zvinobatanidza vanhu vanotongwa" kubva Belmont Report kuti mamwemazwi yokuti "tsvakurudzo chete-kukuvadza munhu mukana." The zvokukwegura ari yezvinoreva Belmont Report vari zvakanaka nezvakataurwa encore. The IRBs pana Princeton uye Georgia Tech rakatonga kuti encore akanga asina "tsvakurudzo zvinobatanidza vanhu vanotongwa," uye naizvozvo zvisingachinji kudzokorora pasi Common Rule. Zvisinei, encore ane zvakajeka-kukuvadza munhu zvinogona; panguva yayo zvikuru, encore Tingangonyanya pave vanhu vasina mhosva vari mujeri nokuda utongi hurumende. A Nzira zvinotaurwa nemabhuku kureva kuti vaongorori havafaniri kuvanda kuseri yakatetepa, nomutemo yeshoko "tsvakurudzo zvinobatanidza vanhu vanotongwa," kunyange kana IRBs kumubvumira. Asi, vanofanira kupfeka mamwemazwi yokuti "tsvakurudzo dzevanhu-kukuvadza zvinogona" uye vanofanira kuisa zvose oga tsvakurudzo avo nevanhu-kukuvadza kudzi- zvetsika nezvayo.
Chechitatu, Menlo Report anodana vanotsvakurudza kuti akudziridze vane chekuita kuti vanonzi kana kushandisa Belmont zvinotaurwa. Sezvo kutsvakurudza vakabva yoga zvoupenyu hwavo chinhu ari zvakawanda midzi zuva nezuva mabasa, yetsika nezvavanofunga inofanira kuwedzerwa mhiri chete dzakananga mutsvagurudzo kusanganisira vasiri vechikamu uye zvakatipoteredza apo pakutsvakurudza kunoitika. Nemamwe mashoko, Menlo Report kunoda vanotsvakurudza kudzamisisa yavo yetsika munda maonero mhiri chete vatori vavo.
Izvi Nhoroondo okuwedzera rinopa pfupi chaizvo muchidimbu kutsvakurudza tsika mumagakava uye sayenzi yezvokurapa, uyewo kombiyuta nesayenzi. Nokuti bhuku pakureba mabatiro kutsvakurudza tsika mune zvesayenzi yezvokurapa, ona Emanuel et al. (2008) kana Beauchamp and Childress (2012) .
