lifaaqa Historical

dood kasta oo anshaxa cilmi u baahan yahay in la ogaado, ee la soo dhaafay, cilmi ayaa magaca sayniska sameeyey waxyaalo xun. Mid ka mid ah ugu daran cadaab ahaa Waraabow Tuskegee ka Study. In 1932, cilmi-ka Adeegga Caafimaadka US Dadweynaha (antaynka) ku qoran oo ku saabsan 400 nin oo madow qaba syphilis daraasaddan ah si ay ula socdaan saameynta cudurka. Nimankanu laga qoray agagaarka Tuskegee, Alabama. Bilowgiiba daraasadda ahaa non-ku-daweynta, waxaa loo loogu talagalay in loo idmo diiwaan taariikhda cudurka ragga madow. ka qaybgalayaasha ayaa u khiyaanaysay oo ku saabsan nooca waxbarasho-ay sheegay in ay ahayd baadhitaan ah "dhiig xun" kolba ay bixiyeen daaweynta been ah oo waxtar, inkastoo waraabow waa cudur dilaa ah. Sida daraasadda gudubtay, daaweynta ammaan ah oo wax ku ool ah waraabowga waxaa lagu horumariyo, laakiin cilmi firfircoon dhexgalay si looga hortago in ka qaybgalayaashu ay ka qaadan daaweyn meel kale. Tusaale ahaan, intii lagu jiray dagaalkii labaad ee dunida cilmi kooxda xaqiijisatay deferments qabyo ah dadka oo dhan in daraasadda si looga hortago daaweynta raggii aqbaleen lahaa wayna u soo galeen Ciidamada Qalabka Sida. Cilmi sii waday in ay ka qaybgalayaashu khiyaanayn oo Beeniyey iyaga daryeela 40 sano. Daraasaddu waxay ahayd deathwatch ah 40-sano.

Tuskegee Waraabow Study ayaa ka dhacay kadib markii cunsuriyad iyo u sinnaan la'aanta ba'an in ay ahayd wax caadi ah in qaybta koonfureed ee Maraykanka waqti. Laakiin, in ka badan taariikhda 40-sano, waxbarasho ku lug leh daraasiin cilmi, labada madow iyo caddaan. Oo, marka lagu daro cilmi toos ah ugu lug, dad badan oo dheeraad ah waa in akhriyey mid ka mid ah 15 wararka ee daraasadda lagu daabacay suugaanta caafimaad (Heller 1972) . In bartamihii 1960-saabsan-ka dib 30 sano oo waxbarasho ka bilaabay-a shaqaale antaynka magacaabay Robert Buxtun bilaabay riixaya gudahood antaynka si loo soo afjaro daraasadda, oo uu tixgeliyaa damiir xun. Iyada oo laga jawaabayo Buxtun, 1969 antaynka isugu guddi la sameeyo dib u eegis dhamaystiran anshaxa daraasadda. Illaa mudadaasi, guddiga dib u eegista anshaxa go'aansaday in cilmi-waa in ay sii wadaan wax soodayn daaweynta ka soo qaaday dadkii cudurka. Inta lagu jiro doodaha ee, mid ka mid xubin ka mid ah guddiga xitaa xusay: "Marna ma yeelan doonaan waxbarasho sida tan oo kale, faa'idaystaan ​​waxaa ka mid ah " (Brandt 1978) . The guddiga cad oo dhan, kaas oo inta badan ka kooban dhakhaatiir, sameeyey go'aan ah in nooc ka mid ah oggolaansho la wargeliyey waa in la helay. Laakiin, guddiga xukumay ragga qudhooduba waxay awoodi bixinta oggolaansho la wargeliyey sababta oo ah da'da iyo heerka u hooseeya ee waxbarashada. Guddiga waxay ku taliyeen, oo sidaas daraaddeed, in cilmi helaan "oggolaansho la wargeliyey gaadh" ka saraakiisha caafimaadka ee maxaliga ah. Sidaas daraaddeed, xitaa ka dib markii dib u eegis ah oo ay ka buuxaan anshaxa, heyn daryeelka sii. Ugu dambayntii, Robert Buxtun qaatay sheekada wariye, iyo in 1972 Jean Heller qoray taxane ah oo articles wargeyska in bandhigi daraasadda dunida. Waxa ay ahayd oo kaliya ka dib markii caro dadweyne baahsan in daraasadda waxaa ugu dambeyntii dhamaatay iyo daryeel waxaa loo bixiyey inuu nin ka mid ahaa oo ka badbaaday.

Dhibanayaasha daraasaddan ka mid ah ma ahan oo keliya ee 399 nin, laakiin sidoo kale qoysaskooda: ugu yaraan 22 naagood, 17 carruur ah, iyo 2 dhaleen la syphilis laga yaabaa in qandaraas cudurka iyadoo ay sabab u haayo daaweynta (Yoon 1997) . Dheeraad ah, dhibaatooyinka ay keenaan daraasad dheer sii ka dib markii ay dhamaatay. The waxbarasho-Xaq-hoos aaminaya in Americans African lahaa in bulshada caafimaadka, nabaad guurka ah ee isku halleeya waxaa laga yaabaa in ay keentay African-Americans si looga fogaado in daryeel caafimaad ay determent ay caafimaadka (Alsan and Wanamaker 2016) . Dheeraad ah, la'aanta ah ee isku halleeya caqabad ku noqday dadaalka si loo daweeyo HIV / AIDS ee 1980 iyo 90s (Jones 1993, Ch. 14) .

Inkasta oo ay adag tahay in la qiyaaso cilmi sidaas bahalnimada maanta dhacaya, waxaan u malaynayaa in ay jiraan saddex casharo muhiim ah ka Waraabow Tuskegee ka Study waayo, dadka cilmi-bulshada ee da'da digital. First, waxa ay na xasuusinaysaa in ay jiraan qaar ka mid ah waxbarashada in si fudud waa in aysan dhicin. Second, waxaa uu ina tusinayaa in cilmi waxyeelayn kara ma ka qaybgalayaasha kaliya, laakiin sidoo kale qoysaskooda iyo bulshada oo dhan muddo dheer ka dib cilmi la soo dhameeyay. Ugu dambeyntii, waxa uu muujinayaa in cilmi samayn kartaa go'aanada anshaxa laga cabsado. Dhab ahaantii, waxaan qabaa in qaar ka mid ah u abaari cabsi cilmi maanta in dad badan oo lug ku leh daraasaddan sameeyey go'aano xun sida badan oo kale muddo dheer. Markaasaa, nasiib daro, waa Tuskegee by jirin loola jeedaa gaar ah; waxaa jiray dhowr ah tusaalayaal kale oo cilmi bulsho iyo caafimaad dhibaato xilligii this (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .

In 1974, ay jawaab u Waraabow Tuskegee ka Study iyo kuwan fashilaad kale anshaxa cilmi, Congress Maraykanka abuuray Guddiga Qaranka ee Ilaalinta ee Maadooyinka Aadanaha ee Biomedical iyo Dabeecadda Research iyo xilsaaray guddiga si ay u horumariyaan xeerarka anshaxa cilmi ku lug leh maadooyinka aadanaha. Ka dib markii afar sano shirka Shirka Center Belmont ah, kooxda soo saaray Report Belmont ah, dukumenti caato ah, laakiin xoog badan in uu saamayn wayn labada doodaha la taaban karin in bioethics iyo dhaqanka maalin kasta ee cilmi-baarista.

Report Belmont waxay leedahay saddex qaybood. In ugu horeysay ee qaybta-Soohdimaha u dhaxaysa Practice iyo Research-ka Report Belmont sharxayaa ay ragu wado. Gaar ahaan, waxa ay ku doodaysaa for farqiga u dhexeeya cilmi, oo doondoontaa aqoon generalizable, iyo dhaqanka, taas oo ka mid ah daaweynta iyo hawlo maalmeedka. Dheeraad ah, waxa ay ku doodaysaa in mabaadi'da anshaxa ee Report Belmont ka codsan oo kaliya in ay cilmi-baarista. Waxaa la soo dooday in soocin this dhexeeya cilmi baaris iyo waxqabad waa hab Report Belmont waa Geyso in cilmi-bulshada ee da'da digital (Metcalf and Crawford 2016; boyd 2016) .

The qaybo labaad iyo saddexaad ee Report Belmont jiifay saddex mabaadi'da-Ixtiraamka Dadka anshaxa; Raxmaan, iyo Justice-iyo qeex sida mabaadi'da loo isticmaali karo ku dhaqanka cilmi. Kuwanu waa mabaadiida aan ku tilmaamay in faahfaahin dheeraad ah ee cutubka.

Report Belmont oo dhigaya gool ballaadhan, laakiin ma aha dokumenti in si fudud loo isticmaali karo si uu u maareeyo hawlaha maalin-ka-maalin. Sidaa darteed, Dowladda Maraykanka abuuray set ah xeerarka la colloquially yeedhay Rule Common (magaciisa rasmiga ah uu yahay Title 45 Code of Federal Regulations, Part 46, Subparts A - D) (Porter and Koski 2008) . xeerarka waxay sheegayaan habka loo eegidda, oggolaanshaha, iyo ilaalinta cilmi, iyo inay yihiin xeerarka ah in Guddiyada Review Hay'adeed (IRBs) waxaa loo xilsaaray fulinta. In la fahmo farqiga u dhexeeya Report Belmont iyo Rule Common, bal ka fiirsada kasta ka hadlaysaa ogolaansho wargeliyay: Report Belmont ku sharaxayaa sababaha falsafada for oggolaansho la wargeliyey iyo sifooyinka ballaadhan in wakiil lahaa oggolaansho run wargeliyay halka Rule Common taxan sideed loo baahan yahay iyo lix optional xubno ka mid ah dokumenti oggolaansho la wargeliyey. Sharci ahaan, Rule Common xukuma dhowaad dhammaan cilmi in Dowladda Maraykanka helo maalgelin. Dheeraad ah, hay'adaha badan in Dowladda Maraykanka dhaqaale ka hela caadi ahaan codsan Rule Common in cilmi oo dhan ka dhacaya hay'adda in, iyadoo aan loo eegin asal maalgelinta. Laakiin, Rule Common uusan si toos ah u codsan at shirkadaha aan maaliyad cilmi Dowladda Maraykanka hesho.

Waxaan u maleynayaa in ku dhowaad cilmi oo dhan ay ixtiraamaan gool ballaaran oo cilmi anshaxa sida ka muujiyay in Report Belmont ah, laakiin waxaa jira xanaaq baahsan la Rule Common iyo geeddi-socodka la IRBs shaqeeya (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Si aad u noqoto cad, kuwa muhiim ah IRBs kama soo horjeedaan anshaxa. Saas ma aha, waxay aaminsan yihiin in nidaamka hadda ma dhufan dheelitirka ku haboon ama fiican qabsan karo, gool ay dhex habab kale. Cutubkan, si kastaba ha ahaatee, waxay qaadan doontaa IRBs kuwaas oo sida la siiyey. Haddii lagaaga baahan yahay inaad raacdo xeerasha IRB ah, markaa waa in aad iyaga u raacdaan. Si kastaba ha ahaatee, waxaan idinku dhiirigelinaynaa inaad sidoo kale waxay qaadan a hab mabaadi'da ku salaysan markii la tixgelinayo anshaxa ee cilmi-baarista.

asalka Tani aad si kooban u soo koobayaa sida aan u yimid nidaamka sharciyada ku salaysan dib u eegis IRB oo dalka Mareykanka ah. Marka la fiirinayo Report Belmont iyo Rule Common maanta, waa in aynu ogaannaa in ay u abuurmeen in marxalad kala duwan, waxaana la-arrin macquul ah-ka jawaabaya dhibaatooyinka xiliyo hore, in jajaban gaar ah ee anshaxa caafimaadka inta lagu guda jiro iyo ka dib dagaalkii labaad ee adduunka (Beauchamp 2011) .

Waxa intaa dheer in dadaalka anshaxa by saynisyahano caafimaadka iyo habdhaqanka si ay u abuuraan codes anshaxa, waxaa kale oo yar yar iyo ka yar si fiican u ahaayeen dadaaal la ogsoon yahay kuwa cilmiga kombuyuutarka. Dhab ahaantii, waxay cilmi-ugu horeeyay ee la kulanaa caqabadaha anshaxa abuuray by cilmi da'da digital ma ay saynisyahano bulshada; waxay ahaayeen kuwa cilmiga kombuyuutarka, si gaar ah cilmi in ammaanka computer. Intii lagu guda jiray 1990 iyo 2000 cilmi ammaanka computer sameeyay tiro ka mid ah waxbarashada anshaxa su'aal in wax lug sida la wareegay botnets iyo jabsiga galay kumanaan kombiyuutarada la passwords daciif ah (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Iyada oo laga jawaabayo waxbarashada kuwan, US Dowladda-gaar ah Waaxda of Homeland Security-abuuray guddi buluug-qoofalan tahay in ay qoraan hagaya qaab anshax cilmi ku lug leh macluumaad iyo teknolojiyada isgaarsiinta (ICT). Natiijada dadaal oo intaasu waxay ahayd Warbixinta Menlow (Dittrich, Kenneally, and others 2011) . Inkasta oo walaac of cilmi ammaanka computer ma aha dhab ahaan la mid ah sida cilmi bulsho, Report Menlow siiyaa saddex casharo muhiim ah oo cilmi bulsho.

First, Report Menlow waxa ay xaqiijineysaa saddexda Belmont mabaadi'da-Ixtiraamka Dadka, Raxmaan, iyo Justice-iyo darayaa mabda 'a afaraad: Ixtiraamka Law iyo Public Interest. Waxaan ku tilmaamay this mabda'a afaraad iyo sida ay tahay in la mariyo cilmi bulsho ee cutubka ugu weyn (Qaybta 6.4.4).

Second, Report Menlow ku baaqaysaa cilmi ay ka gudbaan qeexidda cidhiidhi ah "cilmi ku lug leh maadooyinka aadanaha" ka Report Belmont in ay fikrad guud oo ah "cilmi leh kara aadanaha-yeesho." Xuduudda ay baaxadda Report Belmont waxaa sidoo kale lagu muujiyey by Encore. The IRBs at Princeton iyo Georgia Tech xukuntay in Encore ma ahaa "cilmi ku lug leh maadooyinka aadanaha," oo sidaas daraaddeed ma hoos in dib loo eego hoos Rule Common. Si kastaba ha ahaatee, Encore si cad u leedahay awood aadanaha-yeesho; ay ugu xad-dhaaf ah, Encore yaabo keeni kartaa in dad aan waxba galabsan oo lagu Xir Xiray by dawladaha cadaadis. A habab mabaadi'da ku salaysan macnaheedu waa in cilmi-qarin dambeeya cidhiidhi ah, qeexidda sharciga ah ee "cilmi ku lug leh maadooyinka aadanaha," xitaa haddii IRBs oggoleyn. Saas ma aha, waa in ay la qaato fikrad guud oo ah "cilmi leh aadanaha-yeesho kara" waana in ay hoosaysiin oo dhan ay cilmi gaar ah leh aadanaha-yeesho kara in ay tixgelin anshaxa.

Saddexaad, Report Menlow ku baaqeysaa in la ballaariyo cilmi daneeyayaasha la tixgeliyo marka la dalbanayo mabaadi'da Belmont. Sida cilmi ayaa ka howgala gaar ah nolosha si wax dheeraad ah oo gundhig hawlaha maalin-ka-maalin, tixgelin anshaxa waa in la balaariyay ka baxsan oo kaliya ka qaybgalayaasha cilmi gaar ah waxaa ka mid ah non-qayb-galayaasha iyo deegaanka, halkaas oo cilmi qaadataa meel. In si kale loo dhigo, Report Menlow ah oo ku baaqay in cilmi in la ballaariyo ay beerta anshaxa of view ka baxsan oo kaliya ka qaybgalayaashu ay.

Tani lifaaqa taariikhiga bixisaa dib u eegis ah oo aad u kooban oo ku saabsan anshaxa cilmi sayniska bulshada iyo caafimaadka, iyo sidoo kale computer science. Waayo, daaweynta dhererka buugga anshaxa cilmi sayniska caafimaadka, arki Emanuel et al. (2008) ama Beauchamp and Childress (2012) .