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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.

Ernest Hendon

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.

Sources� http://www.infoplease.com/spot/bhmtuskegee1.html� http://www.huffingtonpost.com/susan-reverby/a-new-lesson-

from-the-old_b_378649.html� http://ihm.nlm.nih.gov/luna/servlet/detail/NLMNLM~1~1~101447

551~209482:The-duties-of-the-health-department