Historical appendix

Wannan shafukan tarihi ya ba da cikakken taƙaitaccen nazari game da ilimin bincike a Amurka.

Duk wani tattaunawa game da ilimin kimiyya ya bukaci sanin cewa, a baya, masu bincike sun aikata abubuwa masu banƙyama da sunan kimiyya. Ɗaya daga cikin mafi mũnin waɗannan shi ne binciken Nazarin na Syllalis na Tuskegee (tebur 6.4). A 1932, masu bincike daga Hukumar Kula da Lafiya ta Jama'a ta Amurka (PHS) sun sanya kimanin mutane 400 da suka kamu da cutar tare da syphilis a cikin wani binciken don kula da cutar. Wadannan mutane sun karu daga yankin Tuskegee, Alabama. Tun daga farko bincike bai kasance ba ne; an tsara shi ne kawai don rubuta tarihin cutar ta hanyar balaga fata. Yawancin mahalarta sun yaudare game da irin binciken da aka yi musu-an gaya musu cewa binciken "mummunan jini" -a kuma ba su kyauta marasa lafiya, kuma ko da yake syphilis wata cuta ne. Yayin da binciken ya ci gaba, an yi amfani da maganin lafiya da tasiri ga syphilis, amma masu bincike sun shiga tsakani don hana mahalarta samun magani a wasu wurare. Alal misali, a lokacin yakin duniya na biyu, ƙungiyar bincike ta kulla takardun gyare-gyare na dukan maza a cikin binciken don hana magungunan da maza zasu samu idan sun shiga rundunar dakarun. Masu bincike sun ci gaba da yaudarar mahalarta kuma suka musanta musu da shekaru 40.

Nazarin Harshen Syllalis na Tuskegee ya faru ne a kan wani yanayi na wariyar launin fata da rashin daidaituwa da yawa da aka saba a kudancin Amurka a wancan lokaci. Amma, a kan tarihin shekaru 40, binciken ya shafi dubban masu bincike, duka baki da fari. Kuma, ban da masu bincike a kai tsaye, da yawa sunfi karanta daya daga cikin rahotanni 15 na binciken da aka wallafa a littattafai na likita (Heller 1972) . A tsakiyar shekarun 1960 - kimanin shekaru 30 bayan binciken ya fara - ma'aikacin PHS mai suna Robert Buxtun ya fara turawa a cikin PHS don kawo karshen binciken, wanda ya dauka a matsayin mummunan halin kirki. Bisa ga Buxtun, a 1969, PHS ta shirya kwamitin don yin cikakken nazari game da binciken. Abin mamaki shine, kwamitin nazari na al'ada ya yanke shawarar cewa masu bincike su ci gaba da rike magani daga mutanen da ke fama da cutar. A yayin shawarwarin, daya daga cikin kwamiti ya bayyana cewa: "Ba za ku taba samun wani binciken kamar haka ba; Yi amfani da ita " (Brandt 1978) . Kullin dukkanin farar fata, wanda mafi yawancin likitoci ne, sun yanke shawara cewa an samu wasu nau'i na izinin sanarwar. Amma kwamitin ya yanke hukunci ga maza da kansu ba su iya bayar da izini ba saboda shekarunsu da rashin ilimi. Ƙungiyar ta ba da shawarar cewa, masu bincike sun sami "karɓar sanarwar da aka ba su" daga likitoci na gida. Don haka, ko da bayan cikakken nazari na al'ada, kulawar kulawa ya ci gaba. A ƙarshe, Buxtun ya kai labarin ga manema labaru, kuma, a 1972, Jean Heller ya rubuta jerin takardu na jaridar da suka gabatar da binciken ga duniya. Sai dai bayan bayanan jama'a da yawa cewa binciken ya ƙare ƙarshe kuma an ba da hankali ga mutanen da suka tsira.

Wadanda suka kamu da wannan binciken sun haɗa da maza 399 kawai, har ma da iyalansu: akalla mata 22, yara 17, da jikoki 2 da syphilis sun iya cutar da cutar saboda rashin hana magani (Yoon 1997) . Bugu da kari, cutar da binciken ya ci gaba da tsawo bayan ya ƙare. Wannan binciken-gaskiya-ya rage amincewar da jama'ar Amirka ke da su a cikin likita, da raguwa a amincewar da zai iya haifar da jama'ar {asar Amirka, don magance lafiyar su (Alsan and Wanamaker 2016) . Bugu da ari, rashin amincewa ya hana kokarin magance cutar HIV / AIDS a shekarun 1980 da 90s (Jones 1993, chap. 14) .

Ko da yake yana da wuya su yi tunanin bincike haka mugayen faruwa a yau, ina ganin akwai uku muhimman darussa daga Tuskegee Syphilis Nazarin ga mutanen da gudanar da zamantakewa da bincike a cikin digital shekaru. Na farko, shi ya tuna mana cewa akwai wasu karatu cewa kawai ya kamata ba ya faru. Na biyu, shi ya nuna mana cewa bincike za su iya cutar ba kawai mahalarta, amma kuma iyalansu da kuma dukan al'umma dogon bayan bincike da aka kammala. A karshe, ya nuna cewa masu bincike za su iya yin mummunan da'a yanke shawara. A gaskiya, ina tsammanin ya kamata sa wasu tsoro a bincike a yau cewa haka mutane da yawa da hannu a cikin wannan binciken sanya irin wannan mugun yanke shawara a kan irin wannan dogon lokaci. Kuma, da rashin alheri, Tuskegee ne da ba yana nufin musamman. akwai da dama wasu misalai na da matsala zamantakewa da kuma kiwon lafiya da bincike a wannan zamanin (Katz, Capron, and Glass 1972; Emanuel et al. 2008) .

A shekara ta 1974, a sakamakon binciken Nazhegee Syphilis da sauran labarun da masu bincike suka yi, Majalisar Dattijai ta Amurka ta kirkiro Hukumar Kasuwanci ta Kariya ga 'Yan Adam na Binciken Halitta da Binciken Bahavioral da kuma bunkasa jagororin da ke tattare da binciken da ya shafi' yan Adam. Bayan shekaru hudu na saduwa a Cibiyar Cibiyar Belmont, kungiyar ta samar da rahoton Belmont , rahoton da ya yi tasiri sosai game da duk wata gardama maras kyau a cikin halittun halittu da kuma aikin yau da kullum na bincike.

The Belmont Report yana da sashe uku. A cikin farko-Ƙididdiga tsakanin Ciniki da Binciken - rahoton ya bayyana fassararsa. Musamman ma, yana jayayya ga bambanci tsakanin bincike , wanda ke neman ilimin da ke da cikakkiyar sani, da kuma aikin , wanda ya haɗa da kulawa da ayyukan yau da kullum. Bugu da ari, yana jayayya cewa ka'idodi na Belmont Report yana amfani ne kawai don bincike. An jaddada cewa wannan bambanci tsakanin binciken da aiki shi ne hanya guda da rahoton Belmont bai dace da bincike na zamantakewa a cikin shekarun zamani ba (Metcalf and Crawford 2016; boyd 2016)

Sashe na biyu da na uku na Belmont Report sun bayyana ka'idoji uku-Mutunta Mutum; Aminci; da kuma Adalci - da kuma yadda za a iya amfani da waɗannan ka'idodi a aikin bincike. Wadannan su ne ka'idodin da na bayyana a cikin dalla-dalla a cikin babban rubutun wannan babi.

Binciken Belmont ya tsara manufofi masu mahimmanci, amma ba takardun da za a iya amfani dashi don kula da ayyukan yau da kullum. Saboda haka, Gwamnatin Amirka ta kafa wata ka'ida wadda ake kira da Dokar Shari'a (Sunan suna suna Lamba na 45 na Dokokin Tarayya, Sashe na 46, Subparts AD) (Porter and Koski 2008) . Wadannan hukunce-hukuncen sun bayyana tsarin don sake dubawa, amincewa, da kulawa da bincike, kuma su ne ka'idodin da hukumar kula da kula da hukumomi (IRBs) ke aiwatarwa. Don fahimtar bambancin tsakanin Belmont Report da Dokar Ƙasa, la'akari da yadda kowannensu ke tattaunawa da izini mai ba da izini: Belmont Report ya bayyana dalilan falsafa na yarda da bayanan da kuma manyan halaye wanda zai wakilci izini na gaskiya, yayin da Dokar Ƙasa ta tsara jerin takwas da shida abubuwa na zaɓi na takardar izinin sanarwar. Ta hanyar doka, Dokar Kasa ta mallaki kusan dukkanin bincike da ke karɓar kudade daga Gwamnatin Amirka. Bugu da ari, yawancin cibiyoyin da ke karɓar kudade daga Gwamnatin Amirka suna amfani da Dokar Kasuwanci akan dukkanin bincike da ke faruwa a wannan ma'aikata, koda kuwa asusun kudi. Amma Dokar Kasuwanci ba ta shafi kamfanonin da ba su karɓar kudade na bincike daga Gwamnatin Amurka ba.

Ina tsammanin kusan dukkanin masu bincike suna girmama manyan manufofi na bincike kamar yadda aka bayyana a cikin rahoton Belmont, amma akwai mummunar fushi da Dokar Ƙasa da kuma aiwatar da aiki tare da IRBs (Schrag 2010, 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . Don bayyanawa, wadanda ke da mahimmanci na IRBs ba su da ka'ida ba. Maimakon haka, sun yi imanin cewa tsarin na yanzu bazai kalubalanci daidaito ba ko kuma zai iya cimma nasararta ta hanyar wasu hanyoyi. Ni, duk da haka, zan ɗauki wadannan IRBs kamar yadda aka ba. Idan ana buƙatar ka bi dokoki na IRB, to, ya kamata ka yi haka. Duk da haka, zan ƙarfafa ka ka kuma dauki ka'idodin ka'ida idan ka la'akari da ka'idojin bincikenka.

Wannan batu ya taƙaita taƙaita yadda muka isa tsarin tsarin IRB a Amurka. Yayin da muke la'akari da rahoton Belmont da Dokar Kasuwanci a yau, ya kamata mu tuna cewa an halicce su ne a wani zamani daban-daban kuma sun kasance masu hankali-suna amsa matsalolin wannan lokacin, musamman ma da suka saba wa ka'idojin kiwon lafiya a lokacin kuma bayan yakin duniya na biyu (Beauchamp 2011) .

Bugu da ƙari, kokarin da masana kimiyyar kiwon lafiya da masu halayya suka yi don ƙirƙirar ka'idoji, akwai kuma ƙananan kokarin da masana kimiyyar kwamfuta suka yi. A gaskiya ma, masu bincike na farko su shiga cikin kalubalantar kalubalantar da masana kimiyya na zamani suka ba su ba masana kimiyyar zamantakewar al'umma ba: sun kasance masana kimiyya na kwamfuta, musamman masu bincike a tsaro na kwamfuta. A lokacin shekarun 1990 da 2000, masu bincike na tsaro sun gudanar da bincike mai yawa wanda ya shafi abubuwan da suka shafi kamfanoni tare da wasu kalmomi masu ƙarfi (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . Dangane da wannan binciken, Gwamnatin Amirka-musamman Ma'aikatar Harkokin Tsaro ta gida-ta kafa wani kwamiti na zane-zane don rubuta tsarin jagoranci don bincike da ke tattare da fasaha da sadarwa (ICT). Sakamakon wannan kokarin shi ne rahoton Menlo (Dittrich, Kenneally, and others 2011) . Kodayake damuwa game da masu bincike na kwamfuta ba daidai ba ne kamar masu bincike na zamantakewa, rahoton Menlo ya ba da darussan darussa masu muhimmanci ga masu bincike na zamantakewa.

Na farko, rahoton Menlo ya tabbatar da ka'idodi guda uku na Belmont-Mutunta Mutum, Aminci, da Adalci - kuma ya kara da na huɗu: Mutunta Dokar da Sha'anin Jama'a . Na bayyana wannan ka'ida ta hudu da kuma yadda ya kamata a shafi bincike na zamantakewa a cikin babban ma'anar wannan babi (sashe na 6.4.4).

Na biyu, rahoton Menlo ya yi kira ga masu bincike su ci gaba da ƙaddamar da "binciken da ya shafi shafukan ɗan adam" daga Belmont Report zuwa wani ra'ayi mafi girma na "bincike tare da yiwuwar halayyar mutum". Ƙididdigar ikon da rahoton Belmont ya yi shi ne abin da Encore ya kwatanta. IRBs a Princeton da Jojiya Tech sun yi iƙirarin cewa Encore ba "bincike ne game da batutuwa 'yan adam," saboda haka ba a yi la'akari da shi ba a karkashin Dokar Kasuwanci. Duk da haka, Babu shakka a fili yana da ɗan adam-cin zarafin m; a mafi girma, Encore zai iya haifar da kisa ga gwamnatoci marasa laifi. Ka'idodin ka'ida na nufin cewa masu bincike kada su ɓoye a bayan bayanan da ke da alaka da "binciken da ya shafi 'yan Adam," ko da IRBs sun yarda da shi. Maimakon haka, ya kamata su yi amfani da ra'ayi mafi girma na "bincike tare da halayyar dan Adam" kuma ya kamata su yi nazari da kansu tare da halayyar mutum-yiwuwar la'akari da dabi'a.

Na uku, rahoton Menlo ya yi kira ga masu bincike don fadada masu ruwa da tsaki da aka dauka lokacin amfani da ka'idojin Belmont. Yayin da bincike ya motsa daga wani ɓangaren rayuwa zuwa wani abu da ya fi dacewa a cikin ayyukan yau da kullum, dole ne a fadada sharudda ka'idoji fiye da wasu masu bincike na musamman da zasu hada da wadanda basu halarta ba kuma yanayin da bincike yake faruwa. A wasu kalmomi, rahoton Menlo ya bukaci masu bincike su kara girman ra'ayinsu na al'ada fiye da masu halartar su.

Wannan tarihin tarihi ya ba da cikakken taƙaitaccen nazarin ilimin kimiyya a kimiyya da zamantakewar kimiyya da kuma kimiyyar kwamfuta. Domin yin nazarin bincike na tsawon lokaci a kimiyyar kiwon lafiya, duba Emanuel et al. (2008) ko Beauchamp and Childress (2012) .