mbiri zakumapeto

nkhani ya makhalidwe kafukufuku ayenera kuvomereza kuti, kale, ofufuza achita zinthu woopsa m'dzina la sayansi. Mmodzi wa woopsa kwambiri chinali Tuskegee chindoko Phunziro. Mu 1932, akatswiri ofufuza US Public Health Service (PHS) analembetsa 400 anthu akuda ndi kachilombo chindoko kuphunzira kuwayang'anira zotsatira za matendawa. Amuna amenewa alemba ntchito ku dera la Tuskegee, Alabama. Kuyambira pachiyambi inali kuphunzira sanali achire; izo yokonzedwa chabe kulembamo mbiri ya matenda amuna wakuda. ophunzira ananyengedwa mmene phunziro-anauzidwa kuti anali kuphunzira "magazi zoipa" ndipo iwo anapereka zonyenga ndiponso operewera mankhwala, ngakhale chindoko ndi matenda oopsa. Atayamba kuphunzira nawo, otetezeka ndi ogwira mankhwala kwa chindoko anali akupangidwa koma ofufuza za mwachangu linalowererapo kuteteza ophunzira kupeza chithandizo kwina. Mwachitsanzo, panthawi ya nkhondo yachiwiri kafukufuku gulu wotetezedwa kusodza deferments kwa anthu onse mu phunziro pofuna kupewa matenda amuna anaphunzira anali kulowa onyamula Mphamvu. Akatswiri wapitiriza kunyenga ophunzira ndi kukana kusamalira zaka 40. phunzirolo ndi wazaka 40 deathwatch.

The Tuskegee chindoko Phunziro zinachitika likhale tsankho ndiponso kusiyana kwambiri kuti ankakonda kum'mwera kwa US panthawiyo. Koma, pa mbiri yake wazaka 40, kuphunzira nawo ambirimbiri ofufuza onse wakuda ndi oyera. Ndipo, kuwonjezera ofufuza amagwira nawo, ambiri ayenera kuwerenga limodzi la malipoti 15 phunziro m'mabuku a zachipatala (Heller 1972) . Cha m'ma 1960, pafupifupi zaka 30 pambuyo pa phunziroli anayamba wa PHS wantchito wina dzina lake Robert Buxtun anayamba kuuza mu PHS kuthetsa phunziro, amene ankaona choipitsitsa mwamakhalidwe. Poyankha Buxtun, mu 1969 ndi PHS msonkhano ndi gulu kuchita wathunthu zikuyenela review cha phunziroli. N'zachisoni kuti zikuyenela review gulu anaganiza kuti akatswiri ayenera kupitiriza saleka chithandizo kwa anthu kachilombo. Pa deliberations ndi mmodzi wa gulu ngakhale anati: "Simudzakhala ndi kafukufuku wina monga chonchi; kumumvera " (Brandt 1978) . Onse gulu woyera, umene makamaka wopangidwa ndi madokotala, anachita kusankha kuti ena mawonekedwe a chilolezo mozindikira ayenera kuthi. Koma, gulu adzaweruzidwa amuna okha sangathe kupereka mozindikira chilolezo chifukwa cha msinkhu wawo ndi mlingo wochepa wa maphunziro. The gulu analimbikitsa Choncho, kuti akatswiri ndi kulandira "surrogate mozindikira chilolezo" kuchokera Akuluakulu a zachipatala. Choncho, ngakhale pambuyo pa review zonse zachinyengo, ndi anasiya chisamaliro anapitiriza. Pamapeto pake, Robert Buxtun anatenga nkhani ya mtolankhani, ndipo mu 1972 Jean Heller analemba nkhani m'nyuzipepala ankawadzudzula phunziro kwa dziko. Iwo anali pambuyo ponseponse chochititsa manyazi ndi chopusa poyera kuti inali kuphunzira kunatha ndi chisamaliro wotwaliwa kwa anthu amene anapulumuka.

Akuvutika chifukwa cha phunziroli monga osati monga anthu 399, komanso mabanja awo: akazi pafupifupi 22, ana 17, ndipo 2 adzukulu ndi chindoko mwina matenda chifukwa cha kumana chithandizo (Yoon 1997) . Komanso, mavuto ndi phunziro anapitiriza yaitali pambuyo inatha. Phunziro-zifukwa-utachepa kukhulupirira kuti African America anali m'dera la mankhwala, ndi kukokoloka mu kukhulupirira kuti mwina zinachititsa African America kupewa chithandizo kwa determent thanzi lawo (Alsan and Wanamaker 2016) . Komanso sakhulupirira angaletsedwe khama kuchiza HIV / AIDS mu 1980s ndi 90s (Jones 1993, Ch. 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, pobwezera Tuskegee chindoko Phunziro zina zolephera koyenela ofufuza za US Congress analenga Commission National kwa Protection nkhani Human wa Biomedical ndi khalidwe Research ndi tasked komiti kukhala malangizo koyenela kuti kafukufuku wokhudza nkhani anthu. Patatha zaka zinayi msonkhano ku Belmont Center Conference, gulu opangidwa Report ndi Belmont, chikalata wochepa koma zamphamvu zimene wakhala akuthandiza kwambiri pa makani onse umboni mu bioethics ndi mchitidwe wa tsiku ndi tsiku kafukufuku.

The Report Belmont ali m'magawo atatu. M'nthawi ya chigawo-Malire Pakati Khalani ndi Research ndi Report Belmont iwonetsere purview ake. Kwenikweni, ananena kuti pali kusiyana pakati pa kafukufuku, amene amafunafuna kudziwa generalizable, ndi zochitika womwenso mankhwala tsiku ndi tsiku ndi ntchito. Ndiponso, ananena kuti kutsatira mfundo zabwino za Report ndi Belmont ntchito kokha kafukufuku. Iwo akhala akunama kuti kusiyana pakati pa kafukufuku ndi kuchita njira imodzi kuti Report Belmont ndi misfit kufufuza chikhalidwe mu m'badwo digito (Metcalf and Crawford 2016; boyd 2016) .

Lachiwiri ndi lachitatu mbali ya Report ndi Belmont kuyala zikuyenela mfundo Kulemekeza Anthu atatu; Beneficence; ndi Justice ndi mmene mfundo zimenezi ingagwiritsidwe kuchita kafukufuku. Izi ndi mfundo za ine anafotokoza mwatsatanetsatane mu mutu.

The Report Belmont amakhazikitsa zolinga zambiri, koma si chikalata mosavuta ntchito kuyang'anira zinthu tsiku ndi tsiku. Choncho, boma la US analenga ya malamulo amene colloquially wotchedwa Rule Common (dzina lawo boma ndi Title 45 Code ya Malamulo Federal, Part 46, Subparts A - D) (Porter and Koski 2008) . malamulo amenewa amafotokoza ndondomeko ya kupenda, kuvomereza, ndi kuyang'anira kafukufuku, ndipo ndi malangizo kuti mabungwe Review matabwa (IRBs) ndi tasked ndi kutsatira. Kuti timvetse kusiyana pakati Report ndi Belmont ndi Rule Common, onani mmene ikufotokoza kuuzidwa chilolezo: Lipoti Belmont akufotokoza zifukwa nthanthi kupempha chilolezo mozindikira ndi makhalidwe waukulu kuimira woona kuuzidwa chilolezo pamene Rule Common limatchula eyiti chofunika ndi asanu optional zinthu za chikalata mozindikira chilolezo. Lamulo Lamulo Common amalamulira pafupifupi kafukufuku amene amalandira ndalama kuchokera ku boma US. Komanso, mabungwe ambiri amene amalandira ndalama kuchokera ku boma US amangoona ntchito Rule Common kufufuza zonse zikuchitika pa ulamuliro umene, kaya gwero la ndalama. Koma, Rule Common sizimangochitika zokha ntchito pa kampani amene sakakulandirani kufufuza ndalama ku boma US.

Ine ndikuganiza kuti pafupifupi akatswiri onse kulemekeza zolinga waukulu kafukufuku zikuyenela anapereka ku Report ndi Belmont, koma anthu ambiri anawawidwa ndi Rule Common ndi ndondomeko ya ntchito ndi IRBs (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Kukhala bwino, anthu kuweruza IRBs si kotsutsana ndi chikhalidwe. M'malo mwake, iwo amakhulupirira kuti dongosolo Kodi kugwidwa ndi bwino yoyenera kapena bwino zolinga zake kudzera njira ina. mutu Komabe, adzatenga IRBs amenewa amapereka. Ngati ayenera kutsatira malamulo a IRB, ndiye muyenera kuzitsatira. Koma ine kulimbikitsa kuti nawonso kutenga mfundo zofotokoza njira tikaonetsetsa chikhalidwe cha ntchito yanu.

maziko awa mwachidule kwambiri mwachidule mmene tinafika malamulo ofotokoza dongosolo la review IRB mu United States. Mukamakambirana Report ndi Belmont ndi Rule Common lero, tizikumbukira kuti analengedwa mu nyengo zosiyanasiyana ndipo-ndithu mwanzeru ndiponso kuyankha mavuto a m'nthawi imeneyo, mu ming'alu makamaka mu chikhalidwe mankhwala Pamene Nkhondo Yachiwiri ya World (Beauchamp 2011) .

Kuwonjezera khama koyenela asayansi mankhwala ndi khalidwe kulenga zizindikiro zachinyengo, palinso ang'onoang'ono ndi wochepa bwino anali kudziwika Khama asayansi kompyuta. Ndipotu ofufuza woyamba anathamangira mu mavuto zikuyenela analengedwa ndi kafukufuku digito m'badwo sanali chikhalidwe asayansi; iwo anali kompyuta asayansi, makamaka akatswiri mu chitetezo kompyuta. Pa 1990s ndi 2000s kompyuta ofufuza chitetezo ankachititsa maphunziro ambiri a ethically zokayikitsa kuti nawo zinthu ngati atalanda botnets ndi kuwakhadzula masauzande makompyuta ndi mapasiwedi ofooka (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Poyankha maphunziro awa, US Government makamaka Dipatimenti ya kwawo Security-analenga ntchito buluu riboni kulemba mumayesetsa chimango koyenela kuti kafukufuku wokhudza mfundo ndi kulankhulana umisiri (ICT). The zotsatira za kuyesayesa anali Report ndi Menlo (Dittrich, Kenneally, and others 2011) . Ngakhale maganizo a kompyuta ofufuza chitetezo si chimodzimodzi monga ofufuza, anthu Report Menlo amapereka zinthu zitatu zofunika kwa akatswiri chikhalidwe.

Choyamba, Report Menlo zikutsimikizanso atatu Belmont mfundo Kulemekeza Anthu, Beneficence, ndi Justice ndipo anawonjezera mfundo yachinayi: Kulemekeza Chilamulo ndi Public Chidwi. I anafotokoza mfundo imeneyi wachinayi ndi momwe iyenera kugwiritsidwa ntchito kufufuza chikhalidwe mu mutu waukulu (Ndime 6.4.4).

Chachiwiri, Report Menlo adzaitana pa ofufuza kusuntha yoposa tanthauzo yopapatiza ya "kafukufuku wokhudza nkhani anthu" kuchokera Report ndi Belmont kwa lingaliro more ambiri "kafukufuku ndi kuthekera munthu owononga." The zofooka za kuchuluka kwa Report ndi Belmont ndi zikusonyezedwa bwino Encore. The IRBs pa Princeton ndipo Georgia Chatekinoloje linagamula kuti Encore sanali "kafukufuku wokhudza nkhani munthu," kotero si nkhani kubwerezanso ulamuliro Common. Komabe, Encore bwino ikhoza munthu owononga; kwake kwambiri kwambiri, Encore akanakhoza zingakhale chifukwa anthu osalakwa kuti kumangidwa ndi maboma kuponderezedwa. A njira mfundo zofotokoza zikutanthauza kuti akatswiri sayenera kubisa kumbuyo yopapatiza, tanthauzo malamulo a "kafukufuku wokhudza nkhani anthu," ngakhale IRBs kuwalola. M'malo mwake, muyenera kutsatira lingaliro more ambiri "kafukufuku ndi munthu owononga angathe" ndipo iwo pansi onse a kafukufuku wawo ndi munthu owononga lingathe kuganizira chikumbumtima.

Chachitatu, Report Menlo adzaitana pa ofufuza kuwonjezera okhudzidwa amene kuganizira kugwiritsa ntchito mfundo Belmont. Monga ofufuza ochokera dera osiyana moyo chinthu china kwambiri anapatsa ntchito tsiku ndi tsiku, tiganizira zikuyenela ayenera kukodzedwa kupitirira basi ophunzira kafukufuku yeniyeni monga sanali ophunzira ndi malo kumene kafukufuku chikuchitika. M'mawu ena, Report Menlo zimafuna ofufuza wotsegula ntchito yawo zikuyenela maganizo kupitirira gulu lawo.

Izi kumapeto mbiri imapereka review mwachidule za chikhalidwe kafukufuku mu sayansi chikhalidwe ndi mankhwala, komanso sayansi kompyuta. Buku la kutalika mankhwala a chikhalidwe kafukufuku sayansi mankhwala, onani Emanuel et al. (2008) kapena Beauchamp and Childress (2012) .