Historical appendix

Duk wani tattaunawa da bincike xa'a bukatar amince da cewa, a baya, masu bincike sun yi mugun abu da sunan kimiyya. Daya daga cikin mafi munin ya Tuskegee Syphilis Nazarin. A 1932, masu bincike daga US Public Health Service (PHS) sa suna kamar 400 baki maza kamuwa da syphilis a wani binciken wajen saka idanu da sakamakon da cutar. Wadannan mutane da aka dauka daga yankin a kusa da Tuskegee, Alabama. Daga farkon nazarin da aka ba warkewa. aka tsara don kawai tattara bayanai tarihin cutar a baki maza. The mahalarta rũɗe su game da yanayin da binciken-aka ce cewa shi ne wani binciken da "bad jini" wato sun miƙa ƙarya, kuma m magani, ko da yake syphilis ne m cuta. Kamar yadda binciken cigaban, aminci da tasiri jiyya ga syphilis aka dabarun, amma sai da masu bincike na rayayye ta shãmakace a hana mahalarta daga samun magani da sauran wurare. Alal misali, a lokacin yakin duniya na II da bincike tawagar kulla daftarin deferments domin dukan mutane a cikin binciken domin ya hana lura da mutanen za su samu yana da suka shiga Armed Forces. Masu bincike na ci gaba da yaudarar kõwa mahalarta da kuma yi musu su kula da shekaru 40. A binciken da aka a 40-shekara deathwatch.

The Tuskegee Syphilis Nazarin ya faru da wani backdrop na wariyar launin fata da kuma rashin daidaito matsananci da yake kowa a kudancin Amurka a lokacin. Amma, a kan ta 40-shekara tarihi, da binciken da hannu da dama, masu bincike, duka baki da fari. Kuma, ban da masu bincike kai tsaye da hannu, mutane da yawa more dole karanta daya daga cikin 15 rahotanni na binciken da aka buga a cikin likita wallafe-wallafen (Heller 1972) . A cikin tsakiyar 1960s-game da shekaru 30 bayan da binciken ya fara-a PHS ma'aikaci mai suna Robert Buxtun fara turawa a cikin PHS kawo karshen binciken, wanda ya dauki morally m. A mayar da martani ga Buxtun, a 1969 da PHS gudanar da wani panel yi cikakken da'a review na binciken. Shockingly, da da'a review panel yanke shawarar cewa masu bincike ya kamata su ci gaba da riƙe magani daga kamuwa da maza. A lokacin deliberations, daya daga cikin panel har jawabin: "Za ka taba samun wani binciken kamar wannan. yi amfani da shi " (Brandt 1978) . The duk farin panel, wanda aka mafi yawa ya yi sama da likitoci, ya yi hukunci a cewa wasu nau'i na informed amsa ya kamata a samu. Amma, da panel hukunci mutanen kansu m samar da informed yarda sabõda shekaru da low matakin ilimi. The panel shawarar, sabili da haka, cewa masu bincike sami "surrogate informed amsa" daga gida likita jami'an. Saboda haka, ko da bayan an cikakken da'a review, da hana na kula ci gaba. A ƙarshe, Robert Buxtun dauki labarin wani dan jarida, kuma a shekara ta 1972 Jean Heller ya rubuta jerin jaridar articles cewa fallasa nazarin ga duniya. Sai da bayan tartsatsi jama'a ƙeta doka cewa binciken da aka a karshe ya ƙare da kuma kula da aka miƙa wa mutanen da suka tsira.

Wadanda ke fama da wannan binciken sun hada da ba kawai da 399 maza, amma kuma iyalansu, a kalla 22 matansu, 17 yara, da kuma 2 jikoki da syphilis iya kamu da cutar a matsayin sakamakon hana magani (Yoon 1997) . Bugu da ari, wata cũta lalacewa ta hanyar nazarin ci gaba da dogon bayan shi ya ƙare. A binciken-justifiably-rage dogara da Afirka Amirkawa da a likita al'umma, an yashwa a dogara da zai yi jagoranci Afrika-Amirkawa don kauce wa likita kula da determent da kiwon lafiya (Alsan and Wanamaker 2016) . Bugu da ari, da rashin amincewa kange kokarin yi wa HIV / AIDS, a shekarun 1980s kuma 90s (Jones 1993, Ch. 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 1974, a mayar da martani ga Tuskegee Syphilis Nazarin da waɗannan sauran da'a kasawa da masu bincike, Amurka Congress halitta Hukumar kare Human talakawan ilimin halittu da aikin likita da kuma Behavioral Research kuma kallafa kwamitin wajen samar da da'a jagororin domin gudanar da bincike shafe mutum batutuwa. Bayan shekaru hudu da ta sujada a Belmont Conference Center, kungiyar samar da Belmont Report, a siririn amma m daftarin aiki da ya na da gagarumin tasiri a kan biyu m muhawara a bioethics da yau da kullum yi na gudanar da bincike.

The Belmont Report yana da uku sashe. A cikin farko sashe-shata kan iyakoki tsakanin addini da kuma Research-da Belmont Report buga fitar da purview. Musamman ma, shi jayayya ga wani bambanci tsakanin bincike, wanda ya nẽmi generalizable ilmi ba, kuma yi, wanda ya hada da yau da kullum jiyya da kuma ayyukan. Bugu da ari, shi bayar da hujjar cewa da'a ka'idodinta Belmont Report amfani ne kawai ga bincike. An jãyayya da cewa wannan bambanci tsakanin bincike da kuma yi shi ne hanya daya da cewa Belmont Report ne misfit to zamantakewa bincike a cikin digital shekaru (Metcalf and Crawford 2016; boyd 2016) .

Na biyu da na uku sassa na Belmont Report sa fitar uku da'a mizanan-Mutunta Mutanen. karimci; kuma Justice-da bayyana yadda wadannan ka'idojin za a iya amfani da a gudanar da bincike yi. Waɗannan su ne ka'idodin da na bayyana a more daki-daki, a cikin babin.

The Belmont Report buga m raga, amma ba wani daftarin aiki da za a iya samun sauƙin amfani da su kula rana-to-day ayyukan. Saboda haka, gwamnatin {asar Amirka halitta mai sa na dokokin da aka colloquially kira Common Rule (m hukuma suna ne Title 45 Code of Tarayya Dokokin, Part 46, Subparts A - D) (Porter and Koski 2008) . Wadannan dokokin bayyana tsari ga bita, da amincewa da kuma kula da bincike, kuma sũ, dokokin da cewa hukumomi Review Boards (IRBs) ana kallafa da aiwatar. Don gane da bambanci tsakanin Belmont Report da Common Rule, ka yi la'akari da yadda kowace tattauna sanar amsa: da Belmont Report bayyana falsafar dalilan informed yarda da m halaye da zai wakilci gaskiya sanar yarda yayin da Common Rule bada jerin sunayen da takwas da ake bukata da kuma shida tilas abubuwa na an informed yarda daftarin aiki. By doka, Common Rule shugabancin kusan duk bincike cewa na'am kudade daga gwamnatin Amirka. Bugu da ari, mutane da yawa cibiyoyin cewa sama kudade daga gwamnatin Amirka yawanci amfani da Common Rule ga dukan bincike faruwa a wannan ma'aikata, ko da kuwa da kudade Madogararsa. Amma, da Common Rule ba ta atomatik tambaya a kamfanonin da ba su sami bincike kudade daga gwamnatin Amirka.

Ina ganin cewa kusan duk masu bincike girmama m raga na da'a da bincike kamar yadda aka bayyana a cikin Belmont Report, amma akwai tartsatsi tsangwama tare da Common Rule da aiwatar da aiki da IRBs (Schrag 2010; Schrag 2011; Hoonaard 2011; Klitzman 2015; King and Sands 2015; Schneider 2015) . To a fili, wadanda m na IRBs ba da xa'a. Ã'a, sun yi imani da cewa a halin yanzu tsarin ba ya buge da ya dace balance ko zai iya mafi alhẽri ta cimma burinta ta hanyar wasu hanyoyi. Wannan babi, duk da haka, zai yi wadannan IRBs kamar ba. Idan kana bukata su bi dokoki na wani IRB, to, ya kamata ka bi su. Duk da haka, Ina karfafa ka ga ma sha a ka'idojin tushen m lõkacin la'akari da xa'a na gudanar da bincike.

Wannan baya sosai a taƙaice takaita yadda muka isa a dokoki na tushen tsarin IRB review a Amurka. A lokacin da la'akari da Belmont Report da Common Rule yau, ya kamata mu tuna cewa an halitta a wani daban-daban zamanin da aka-quite HIKIMA-amsawa ga matsalolin da cewa zamanin, musamman breaches a likita xa'a a lokacin da kuma bayan yakin duniya na biyu (Beauchamp 2011) .

Bugu da ƙari, mai da'a da kokarin da kiwon lafiya da kuma halin da masana kimiyya ya halicci da'a lambobin, akwai kuma karami, kuma m da aka sani da kokarin da kwamfuta masana kimiyya. A gaskiya, na farko bincike gudu a cikin da'a kalubale halitta digital shekaru bincike ba zamantakewa masana kimiyya. sun kasance kwamfuta masana kimiyya, musamman masu bincike a kwamfuta tsaro. A lokacin 1990s kuma 2000s kwamfuta tsaro masu bincike gudanar da dama ethically m karatu cewa hannu abubuwa kamar shan kan botnets da shiga ba tare da izini ba cikin dubban kwakwalwa tare da m kalmomin shiga (Bailey, Dittrich, and Kenneally 2013; Dittrich, Carpenter, and Karir 2015) . A mayar da martani ga wadannan karatu, gwamnatin {asar Amirka-musamman da Ma'aikatar Tsaro gida-halitta a blue-kintinkiri hukumar rubuta a shiryarwa da'a tsarin domin gudanar da bincike shafe bayanai da kuma fasahar sadarwa (ICT). Sakamakon wannan} o} arin shi ne Menlo Report (Dittrich, Kenneally, and others 2011) . Ko da yake damuwa da kwamfuta tsaro masu bincike ba su daidai kamar zamantakewa masu bincike, da Menlo Report samar da uku muhimman darussa ga zamantakewa masu bincike.

Na farko, da Menlo Report reaffirms uku Belmont ka'idojin-Mutunta mutane, karimci, kuma Justice-da kuma ƙara da a karo na hudu manufa: Mutunta Attaura da Public Interest. Na bayyana wannan hudu manufa da kuma yadda ya kamata a shafi zamantakewa da bincike a babban babi (Sashe 6.4.4).

Na biyu, da Menlo Report kira a kan masu bincike don motsawa bayan kunkuntar definition of "bincike shafe mutum batutuwa" daga Belmont Report zuwa more general mas'ala ta "bincike tare da mutum-addabi m." The takaitar da ikon yinsa, daga cikin Belmont Report suna da kwatanta da Encore. The IRBs a Princeton da kuma Georgia Tech mulki cewa Encore ba "bincike shafe mutum batutuwa," sabili da haka ba batun da za a duba a karkashin Common Rule. Duk da haka, Encore fili yana adam-addabi m. a da mafi matsananci, Encore zai iya yiwuwar haifar da m mutanen da ake tsare da haramta shi gwamnatoci. A ka'idodin tushen hanyoyin nufin cewa masu bincike ya kamata ba boye a baya kunkuntar, shari'a definition of "bincike shafe mutum batutuwa," ko da IRBs yale shi. Maimakon haka, ya kamata su dauko wani m general mas'ala ta "bincike tare da mutum-addabi m" da kuma ya kamata su ƙarƙashin dukan nasu bincike da mutum-addabi m to da'a shawara.

Na uku, da Menlo Report kira a kan masu bincike fadada masu ruwa da tsaki da aka yi la'akari lokacin da ake ji da Belmont ka'idojin. Kamar yadda bincike ya koma daga raba Sphere rayuwa ga wani abu da aka fi saka a rana-to-day ayyukan, da'a sharudda dole ne a kumbura bayan kawai takamaiman bincike mahalarta su sun hada da wadanda ba mahalarta da kuma yanayi inda bincike faruwa. A wasu kalmomin, da Menlo Report kira ga masu bincike zuwa fadada su da'a fagen view bayan kawai su mahalarta.

Wannan tarihi appendix samar da wani sosai taƙaitaccen review bincike xa'a a cikin zaman jama'a da kuma kiwon lafiya kimiyya, kazalika da kwamfuta kimiyya. Ga wani littafi tsawon lura da bincike xa'a a kiwon lafiya kimiyya, gani Emanuel et al. (2008) ko Beauchamp and Childress (2012) .