PPT Accompaniment for Carolina K-12’s lesson
The Tuskegee Syphilis Experiment
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U.S. Public Health Service begins study on effects of syphilis
� In1932,thePublicHealthService,workingwiththeTuskegeeInstitute,beganastudyoftheeffectsofsyphilisonthehumanbody.
U.S. Public Health Service begins study on effects of syphilis� The1932studywascalledthe"TuskegeeStudy
ofUntreatedSyphilisintheNegroMale."� Thestudyinitiallyinvolved600blackmale
volunteers– 399withsyphilis,201whodidnothavethedisease.
� GovernmentofficialsrecruitedAfricanAmericanparticipantsinthestudybyoffering“freemedicalcare”tothem.Theywerealsogivenfreemealsandburialinsurance.
� Themenrecruitedweremostlypoorsharecropper'sfromMaconCounty,Alabama.(MaconCountyhadaparticularlyhighrateofsyphiliscases.)Thesemenhaddifficultlives,hoeingsmallplotsofland,livinginwoodenshacks,andpickingcottonintheseason.TherewaslittlewealthinMaconCountyandaverysmallchanceofseeingadoctor,eventhoughsyphiliswasmorerampanttherethananywhereelseintheSouth.
� Themenenrolledinthestudywerenevertoldtheyhadsyphilis.Instead,researcherskeptthisinformationfromthemandtoldthepatientsthattheywerebeingtreatedfor"badblood,"alocaltermusedtodescribeseveralailments,includingsyphilis,anemia,andfatigue.
U.S. Public Health Service begins study on effects of syphilis� Intruth,the399syphiliticpatientsdidnotreceivewhattheysignedup
for.Theywerenevergiventhepropertreatmentneededtocuretheirsyphilis,sincethegovernmentwantedtostudyuntreatedsyphilis.Thedoctorswerealsointerestedinwhetherthediseaseaffectedwhitesandblacksdifferently.
� Eachtimetheyvisitedthedoctors,thementhoughttheirconditionwasbeingtreatedandcured.Insteadhowever,the“medicine”providedtothemwasfakeandcontainednomedicinalproperties.Thedoctorsandnurseswerenottheretocure,buttoobservetheprogressofuntreatedsyphilis.
� Althoughoriginallyprojectedtolast6months,thestudyactuallywentonfor40years,theentiretimetheparticipantsassumingtheywerebeingtreated.Instead,thegovernmentwaspurposelylettingtheirdiseaseprogressforthestudy.
U.S. Public Health Service begins study on effects of syphilis
� Penicillincameintousein1947,whichcouldcuresyphilis.Hadpenicillinbeenadministeredtothesyphiliticmeninthestudy,manywouldhaveleadlongerandmorecomfortablelives.However,thegovernmentdidnottreatthem.
� Toensurethatthemenwouldshowupforapainfulandpotentiallydangerousspinaltap,thedoctorsmisledthemwithaletterfullofpromotionalhype:“LastChanceforSpecialFreeTreatment.”
� Thefactthatautopsieswouldeventuallyberequiredwasalsoconcealed.(Itwasfromtheautopsiesthatthegovernmentwouldgettheirfinaldata.)
� TheexperimentcontinuedinspiteoftheHendersonAct(1943),apublichealthlawrequiringtestingandtreatmentforvenerealdisease,andinspiteoftheWorldHealthOrganization'sDeclarationofHelsinki(1964),whichspecifiedthat“informedconsent”wasneededforexperimentsinvolvinghumanbeings.
� Bythetimethestudywasexposedin1972,28menhaddiedofsyphilis,100othersweredeadofrelatedcomplications,atleast40wiveshadbeeninfectedand19childrenhadcontractedthediseaseatbirth.
� Patientswhoareuntreatedsometimesdevelopnosymptoms,andsometimesspontaneouslyrecover;buttheycanalsosuffergreatly.Rashes,skingrowths,liverdeformity,heartdamage,paralysis,insanity,anddeathareallpossibleoutcomesoftheuntreateddisease. Syphilis rash on hand
Reconsider this poster.
• ConsideringwhatyouhavenowlearnedaboutTuskegee,doesyourinterpretationofthisposteranditspurposechange?Explain.
• InwhatwaysdoesthemessageofthispostercontradicttheactionsoftheUSHealthDept.?
The study becomes public� ThestoryfinallybrokeintheWashingtonStar onJuly25,1972,in
anarticlebyJeanHelleroftheAssociatedPress.HersourcewasPeterBuxtun,aformerPHSvenerealdiseaseinterviewerandoneofthefewwhistleblowersovertheyears.
� Whentheexperimentwasbroughttotheattentionofthemediain1972,newsanchorHarryReasoner describeditasanexperimentthat“usedhumanbeingsaslaboratoryanimalsinalongandinefficientstudyofhowlongittakessyphilistokillsomeone.”
� ManybegantocompareTuskegeetotheappallingexperimentsperformedbyNazidoctorsontheirJewishvictimsduringWorldWarII.
� ThePHS,however,remainedunrepentant,claimingthemenhadbeen“volunteers”and“werealwayshappytoseethedoctors,”andanAlabamastatehealthofficerwhohadbeeninvolvedclaimed“somebodyistryingtomakeamountainoutofamolehill.”
� Undertheglareofpublicity,thegovernmentendedtheirexperiment,andforthefirsttimeprovidedthemenwitheffectivemedicaltreatmentforsyphilis.
The end of the study� AftertheTuskegeestudybecamepublic,itcaused
apublicoutcrythatledtheAssistantSecretaryforHealthandScientificAffairstoappointanAdHocAdvisoryPaneltoreviewthestudy.
� Thepanelhadninemembersfromthefieldsofmedicine,law,religion,labor,education,healthadministration,andpublicaffairs.
� Thepanelfoundthatthemenhadagreedfreelytobeexaminedandtreated. However,therewasnoevidencethatresearchershadinformedthemofthestudyoritsrealpurpose. Infact,themenhadbeenmisledandhadnotbeengivenallthefactsrequiredtoprovideinformedconsent.
� Themenwerenevergivenadequatetreatmentfortheirdisease. Evenwhenpenicillinbecamethedrugofchoiceforsyphilisin1947,researchersdidnotofferittothesubjects. Theadvisorypanelfoundnothingtoshowthatsubjectswereevergiventhechoiceofquittingthestudy,evenwhenthisnew,highlyeffectivetreatmentbecamewidelyused.
The end of the study� TheadvisorypanelconcludedthattheTuskegeeStudywas"ethically
unjustified"--theknowledgegainedwassparsewhencomparedwiththerisksthestudyposedforitssubjects.
� InOctober1972,thepaneladvisedstoppingthestudyatonce.Amonthlater,theAssistantSecretaryforHealthandScientificAffairsannouncedtheendoftheTuskegeeStudy.
� In"Tuskegee's"wake,majorchangesinfederalrulesgoverningmedicalresearchwereestablished,includingwritteninformedconsentandthecreationofinstitutionalreviewboardstooverseehumansubjectresearch.
� Thestudyalsocreatedanotherlegacy--itbecamethemetaphorforthedistrustofscientificresearch,therisksofgovernmentprovisionofmedicalcare,andtheexploitationofpoorpatients.
Reparations � Inthesummerof1973,aclass-actionlawsuitwasfiledonbehalfofthe
studyparticipantsandtheirfamilies.FredGray,alawyerwhohadpreviouslydefendedRosaParksandMartinLutherKing,wastheleadattorney.In1974,a$10millionout-of-courtsettlementwasreached.(Thisresultedinonlyaround$37,000forsurvivors.)
� Aspartofthesettlement,theU.S.governmentpromisedtogivelifetimemedicalbenefitsandburialservicestoalllivingparticipants.TheTuskegeeHealthBenefitProgram(THBP)wasestablishedtoprovidetheseservices.
� In1975,wives,widowsandoffspringwereaddedtotheprogram.� In1995,theprogramwasexpandedtoincludehealthaswellasmedical
benefits.� Itwasn’tuntilMay,1997thattheUSgovernment
acknowledgeditswrongdoingduringtheexperimentswhenPresidentBillClintonissuedaformalapology.
� ThelaststudyparticipantdiedinJanuary2004.ThelastwidowreceivingbenefitsdiedinJanuary2009.Asof2009,therewere15offspringreceivingmedicalandhealthbenefits.