mbiri zakumapeto

Zowonjezeredwa za mbiriyi zimapereka ndemanga mwachidule cha zoyendetsera kafukufuku ku United States.

Kukambirana kulikonse kwa zoyenera kufufuza kumafunika kuvomereza kuti, mmbuyomu, ofufuza achita zinthu zoopsa dzina la sayansi. Chimodzi mwa zovuta kwambirizi chinali Phunziro la Susuf Tuskegee (tebulo 6.4). Mu 1932, ofufuza ochokera ku US Public Health Service (PHS) analembetsa amuna 400 wakuda omwe akudwala syphilis mu phunziro kuti ayang'ane zotsatira za matendawa. Amuna awa adatumizidwa kuchokera kumadera ozungulira Tuskegee, Alabama. Kuchokera pachiyambi phunziroli linali losawerengeka; Zinalinganizidwa kuti zilembere mbiri yakale ya matendawa mwa amuna akuda. Ophunzirawo adanyengedwa chifukwa cha chikhalidwe cha phunzirolo - anauzidwa kuti anali kuphunzira "magazi oipa" -ndipo anaperekedwa chonyenga komanso mosagwira ntchito, ngakhale kuti tizilombo toyambitsa matenda ndi matenda oopsa. Pamene phunziroli linkapitirira, mankhwala opatsirana ndi othandizira a syphilis adakonzedwa, koma ochita kafukufuku adachitapo kanthu pofuna kuteteza ophunzira kuti asalandire chithandizo kwinakwake. Mwachitsanzo, pa nthawi ya nkhondo yachiwiri ya padziko lonse, gulu lofufuza linapeza mapepala osungira malamulo kwa amuna onse mu phunziroli pofuna kupewa chithandizo chimene amunawa akanachipeza atalowa m'gulu lankhondo. Ochita kafukufuku akupitiliza kupusitsa anthu ndikuwatsutsa kwa zaka 40.

Phunziro la Syphilis la Tuskegee linachitika motsutsana ndi tsankho ndi kusalinganizana kwakukulu komwe kunali kofala kumwera kwa United States panthawiyo. Koma, panthawi ya mbiri yake ya zaka 40, phunzirolo linaphatikizapo akatswiri ambiri ofufuza, onse ofiira ndi oyera. Ndipo, kuwonjezera pa ochita kafukufuku omwe akukhudzidwa mwachindunji, ena ambiri ayenera kuti awerengapo limodzi mwa magawo khumi ndi asanu (15) a kafukufuku wofalitsidwa mu mabuku a zachipatala (Heller 1972) . Pakatikati mwa zaka za m'ma 1960-pafupifupi zaka 30 chiyambireni phunziro - wogwira ntchito ya PHS dzina lake Robert Buxtun anayamba kukankhira mkati mwa PHS kuti athetse phunzirolo, zomwe adawona kuti ndizokwiyitsa. Poyankha Buxtun, mu 1969, PHS inasonkhanitsa gulu kuti liwonetsetse chiyero chonse cha phunziroli. Chododometsa, gulu loyendera ndondomeko ya chikhalidwe linaganiza kuti ochita kafukufuku apitirize kupeŵa chithandizo kwa amuna omwe ali ndi kachirombo ka HIV. Paziganizo, membala wina wa gululo ananenanso kuti: "Simudzakhala ndi phunziro lina monga ili; gwiritsani ntchito mwayiwu " (Brandt 1978) . Gulu lonse loyera, lomwe nthawi zambiri limapangidwa ndi madokotala, linasankha kuti mtundu wina wa chidziwitso chodziwitsidwa uyenera kupezeka. Koma gululi linayesa kuti amunawo sangakwanitse kupereka chilolezo chodziwitsidwa chifukwa cha msinkhu wawo komanso maphunziro awo ochepa. Choncho, gululi linalimbikitsa kuti ochita kafukufuku adzalandire "chilolezo chodziwitsa anthu" kuchokera kwa akuluakulu azachipatala. Choncho, ngakhale pambuyo polemba ndondomeko yokhudzana ndi chikhalidwe, kulephera kwa chisamaliro kunapitiliza. Potsirizira pake, Buxtun anatenga nkhaniyi kwa mtolankhani, ndipo, mu 1972, Jean Heller analemba zolemba za nyuzipepala zomwe zinayambitsa phunzirolo kudziko. Pambuyo pake, anthu ambiri adakalipira kuti phunzirolo linatha ndipo chisamaliro chinaperekedwa kwa amuna omwe adapulumuka.

Anthu omwe amavutika ndi phunziroli sanaphatikizepo amuna 399 okha komanso mabanja awo: osachepera 22 akazi, ana 17, ndi zidzukulu ziwiri ndi syphilis akhoza kutenga matendawa chifukwa choletsa mankhwala (Yoon 1997) . Kuonjezerapo, kuwonongeka kumeneku kunachitika patapita nthawi yaitali zitatha. Kuphunzira-mwachilungamo-kunachepetsa chikhulupiliro chimene Afirika Achimereka anali nacho mu chipatala, kuwonongeka kwa chikhulupiliro chomwe chikhoza kuchititsa Afirika ku America kupeŵa chisamaliro kuwononga thanzi lawo (Alsan and Wanamaker 2016) . Kuwonjezera apo, kusowa kwa chidaliro kunalepheretsa kuyesetsa kuti athetse HIV / Edzi m'zaka za m'ma 1980 ndi 90 (Jones 1993, chap. 14) .

Ngakhale n'zokayikitsa kufufuza kotero zoopsa zikuchitika lero, ine ndikuganiza pali zinthu zitatu zofunika kwa Tuskegee chindoko Phunziro kwa anthu akafufuza chikhalidwe mu m'badwo digito. Choyamba, likutikumbutsa kuti pali maphunziro chabe siziyenera kuchitika. Chachiwiri, izo zikusonyeza kuti kafukufuku akhoza kuwononga osati ophunzira, komanso mabanja awo ndi madera lonse yaitali pambuyo pa kafukufuku yatha. Potsiriza, izo zikusonyeza kuti akatswiri zochita zoopsa abwino. Ndipotu, ine ndikuganiza ayenera kupangira mantha mu ofufuza lero kuti anthu ambiri nawo mu phunziroli munasankha zimenezi woopsa pa zimenezi nthawi yaitali. Ndipo, mwatsoka, Tuskegee ayi wapadera; Panali zitsanzo zina zambiri za kafukufuku mabvuto chikhalidwe ndi mankhwala pa nthawi iyi (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .

Mu 1974, poyankha ku Phunziro la Syphilis la Tuskegee ndi zolephera zina zomwe akatswiri ofufuza, bungwe la US Congress linakhazikitsa bungwe la National Commission for the Protection of Human Biomedical and Conduct Research and that it is designed to develop guidelines for research on subjects. Pambuyo pa zaka zinayi zokonzeka ku msonkhano wa Belmont Conference, gululi linapereka lipoti la Belmont , lipoti lomwe lasokoneza kwambiri magulu awiri osamvetsetseka m'zinthu zamakono komanso zochitika za tsiku ndi tsiku zofufuza.

Lipoti la Belmont liri ndi magawo atatu. M'zigawo zoyamba Pakati pa Zochita ndi Kafukufuku - lipotili limatanthauzira zolinga zake. Makamaka, imanena kusiyana pakati pa kafufuzidwe , komwe kumafuna nzeru zowonjezereka, ndi kuchita , zomwe zimaphatikizapo chithandizo cha tsiku ndi tsiku. Komanso, akunena kuti mfundo za makhalidwe abwino za Belmont Report zimagwiritsidwa ntchito pofufuza. Zakhala zikutsutsana kuti kusiyana kumeneku pakati pa kafukufuku ndi kuchita ndi njira imodzi yomwe Belmont Report sichiyeneretsedwera kafukufuku wa anthu m'zaka za digito (Metcalf and Crawford 2016; boyd 2016) .

Gawo lachiŵiri ndi lachitatu la Report Belmont lili ndi mfundo zitatu za makhalidwe abwino-Ulemu kwa Anthu; Chithandizo; ndi Chilungamo-ndipo fotokozani mmene mfundozi zingagwiritsidwe ntchito pa kafukufuku. Awa ndi mfundo zomwe ndalongosola mwatsatanetsatane mu mutu wa chaputala chino.

Lipoti la Belmont limakhala ndi zolinga zazikulu, koma si chilemba chomwe chingagwiritsidwe ntchito mosavuta kuyang'anira ntchito za tsiku ndi tsiku. Chifukwa chake, boma la US linakhazikitsa malamulo omwe amachitcha kuti Common Rule (dzina lawo ndi Title 45 Code of Federal Regulations, Gawo 46, Otsatira AD) (Porter and Koski 2008) . Malamulowa akulongosola ndondomeko yowonetsera, kuvomereza, ndi kuyang'anira kafukufuku, ndipo ndi malamulo omwe mabungwe oyang'anira ndondomeko a bungwe (IRBs) ali ndi udindo wokakamiza. Kuti mumvetse kusiyana pakati pa Belmont Report ndi Common Rule, ganizirani momwe aliyense akufotokozera chilolezo chodziwitsidwa: Lipoti la Belmont limafotokoza zifukwa zafilosofi zokhudzana ndi chidziwitso chodziwitsidwa ndi zidziwitso zomwe zingakhale zovomerezeka zenizeni, pomwe Common Rule ikulemba zisanu ndi zitatu zoyenera ndi zisanu ndi chimodzi Zosankha zokhazokha zolemba zovomerezeka. Mwalamulo, Common Rule ikulamulira pafupifupi onse kufufuza komwe amalandira ndalama kuchokera ku boma la US. Komanso, mabungwe ambiri omwe amalandira ndalama kuchokera ku boma la US amagwiritsira ntchito Common Rule kwafukufuku amene akuchitika pa bungwelo, mosasamala kanthu za ndalama zomwe zimachokera. Koma Common Rule sichigwira ntchito kwa makampani osalandira ndalama zofufuza kuchokera ku boma la US.

Ndikuganiza kuti pafupifupi ochita kafukufuku onse amalemekeza zolinga zapamwamba za kafukufuku wamakhalidwe abwino monga momwe ziliri mu Belmont Report, koma anthu ambiri akusokonezeka ndi Common Rule ndi ndondomeko yogwira ntchito ndi IRBs (Schrag 2010, 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Kuti zikhale zomveka, omwe akutsutsa IRBs sagwirizana ndi machitidwe. M'malo mwake, amakhulupirira kuti dongosolo laposachedwapa silinayende bwino kapena kuti likhoza kukwaniritsa zolinga zake kudzera mwa njira zina. Ine, komabe, nditenga IRBs ngati izi. Ngati mukuyenera kutsatira malamulo a IRB, ndiye kuti muyenera kuchita zimenezo. Komabe, Ndikufuna ndikulimbikitseni inu kuti inunso kutenga mfundo ofotokoza njira tikaonetsetsa makhalidwe kufufuza kwanu.

Mbiriyi ikufotokozera mwachidule momwe ife tafikira ku malamulo otsogolera a IRB ku United States. Mukamakambirana Lipoti Belmont ndi Lamulo Common masiku ano, tiyenera kukumbukira kuti zinalengedwa nyengo zosiyanasiyana ndipo-ndithu mwanzeru ndiponso kuyankha mavuto a m'nthawi imeneyo, mu ming'alu makamaka mu chikhalidwe zachipatala nthawi ndi pambuyo Nkhondo Yachiwiri Yapadziko Lonse (Beauchamp 2011) .

Kuwonjezera pa zoyesayesa ndi asayansi ndi zamakhalidwe asayansi kupanga zikhulupiliro za chikhalidwe, palinso zochepa zomwe sizidziwika bwino ndi akatswiri a zamakompyuta. Ndipotu, ochita kafukufuku oyambirira kuti azitsatira zovuta zapamwamba zomwe zapangidwa ndi digito-zaka zafukufuku sizinali zasayansi: anali akatswiri a zamakompyuta, makamaka akatswiri ofufuza makompyuta. Pakati pa zaka za m'ma 1990 ndi 2000, akatswiri ofufuza za pakompyuta anayambitsa maphunziro okayikitsa okhudza malamulo omwe anaphatikizapo kutenga matepi ndi kutsegula makompyuta ambirimbiri omwe ali ndi mawu osasintha (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Poyankha maphunzirowa, boma la United States-makamaka Dipatimenti Yopereka Chitetezo Kwawo - linakhazikitsa lamulo labuluu kuti alembe chikhalidwe chotsatira cha kafukufuku wogwiritsa ntchito mauthenga ndi mauthenga oyankhulana (ICT). Zotsatira za khama limeneli ndi Menlo Report (Dittrich, Kenneally, and others 2011) . Ngakhale kuti zovuta za akatswiri ochita chitetezo cha makompyuta sizili zofanana ndi za akatswiri ofufuza zaumoyo, Menlo Report imaphunzitsa maphunziro atatu ofunika kwambiri kwa ochita kafukufuku.

Choyamba, Menlo Report imatsimikiziranso mfundo zitatu za Belmont-Ulemu kwa Anthu, Ubwino, ndi Chilungamo -ndikuwonjezera china: Kulemekeza Chilamulo ndi Chidwi . Ndinafotokozera mfundo iyi yachinayi ndi momwe iyenera kugwiritsidwira ntchito pa kafukufuku wamakhalidwe abwino m'mutu wa chaputala chino (gawo 6.4.4).

Chachiwiri, Menlo Report imapempha ochita kafukufuku kuti apitirize kufotokozera za "kufufuza zokhudza nkhani za anthu" kuchokera ku Belmont Report ku lingaliro lachidziwitso la "kufufuza ndi mphamvu zopweteka zaumunthu." Kulephera kwa zochitika za Belmont Report ndi akuwonetsedwa bwino ndi Encore. Ma IRB a Princeton ndi Georgia Tech adanena kuti Encore sanali "kufufuza pa nkhani zaumunthu," choncho sichidawerengedwe pansi pa Common Rule. Komabe, Encore ali ndi mphamvu zowononga anthu; panthawi yovuta kwambiri, Enanso akhoza kuthetsa anthu osalakwa omwe akukumangidwa ndi maboma opondereza. Ofufuza sayenera kubisala kumbuyo kwachindunji, kutanthauzira kwalamulo "kafukufuku wokhudza nkhani zaumunthu," ngakhale ngati IRB ikulola. M'malo mwake, iwo ayenera kutenga lingaliro lalikulu la "kafufuzidwe ndi mphamvu zopweteka zaumunthu" ndipo ayenera kuganizira kaye kafukufuku wawo omwe ali ndi mphamvu zovulaza anthu kuti azilingalira.

Chachitatu, Menlo Report imapempha ochita kafukufuku kuti afotokoze okhudzidwa omwe akugwiritsidwa ntchito pogwiritsa ntchito mfundo za Belmont. Monga momwe kafukufuku wasamukira kuchokera kumbali yosiyana ya moyo kupita ku chinthu chophatikizidwa kwambiri pazochitika za tsiku ndi tsiku, kulingalira kwa chikhalidwe kuyenera kuwonjezedwa kupatulapo anthu ochita kafukufuku enieni kuti aphatikize osalimbikitsa ndi malo omwe kafukufuku akuchitika. Mwa kuyankhula kwina, Menlo Report imapempha ochita kafukufuku kuti afotokoze gawo lawo lachikhalidwe kusiyana ndi omwe akugwira nawo ntchito.

Zowonjezera za mbiriyi zakhala zikupenda ndemanga mwachidule zokhudzana ndi kafukufuku m'mabungwe a zachipatala ndi zachipatala komanso mu sayansi ya kompyuta. Kuti mupeze kutalika kwa bukhu la machitidwe ochita kafukufuku mu sayansi ya zamankhwala, onani Emanuel et al. (2008) kapena Beauchamp and Childress (2012) .