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The Willowbrook Hepatitis Studies Revisited: Ethical Aspects

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The Willowbrook Hepatitis Studies Revisited: Ethical Aspects REVIEWS OF INFECTIOUS DISEASES * VOL. 8, NO. 1 * JANUARY-FEBRUARY 1986 ? 1986 by The University of Chicago. All rights reserved. 0162-0886/86/0801-0015$02.00 SPECIAL ARTICLE The Willowbrook Hepatitis Studies Revisited:Ethical Aspects Saul Krugman From the Departmentof Pediatrics,New YorkUniversity School of Medicine,New York,New York Studies of the natural history and prevention of viral hepatitis were initiated at Willow- brook State School in 1955. During the subsequent two decades there was considerable controversyregarding the ethical aspects of these studies. The background of these studies is described in detail in historical context. This report should provide the reader with in- formation needed to make an independent objective judgement of the ethics of the Wil- lowbrook hepatitis studies. Duringthe first half of this century,outbreaks of were perceived by some critics to be unethical. As various infectious diseases were prevalentin or- a matter of fact, in recent years the name "Willow- phanages, military barracks,and institutionsfor brook" has become synonymous with medical re- mentallyretarded children. These outbreaks involved searchgone astray.With time, facts have become dis- highly susceptiblepopulations living in conditions torted or forgotten, leaving only emotions. of overcrowdingand poor hygiene. Certain infectious Thirty years have elapsed since the Willowbrook diseases,such as influenzaand measles,occurred as hepatitis studies were initiated in the mid-1950s. I epidemicsat variableintervals. Other infections, such am as convinced today as I was at that time that our as shigellosisand hepatitis,were generally endemic studies were ethical and justifiable. This judgement in nature. is based on knowledge of the extraordinary condi- Duringthe mid-1950smy colleague,Dr. Robert tions that existed in the institution as well as on an Ward,and I wereinvited to join the staff of Willow- assessment of the potential risks and benefits for the brookState School as consultantsin infectiousdis- participants. The purpose of this article is to discuss eases.This institution for mentallyretarded children the ethical aspects of our studies, within their ap- hadbeen plagued by the occurrenceof suchepidemic propriate historical context. It is hoped that this in- and endemicdiseases as measlesand hepatitis.Our formation will enable the readerto make an indepen- effortsduring the nexttwo decadeswere devoted to dent, objective judgement as to the ethics of the the control of these infectious diseases. Willowbrook studies. In 1960an epidemicof measlesswept through Wil- lowbrook, 60 childrendead. The studiesthat leaving Establishment of the Willowbrook we initiatedwith the liveattenuated measles vaccine State School developedby Dr. JohnEnders and his colleaguescul- In 1938 the New York state legislature perceived the minatedin the eradicationof measlesfrom the in- need for an additional institution for the care of men- stitution by the end of 1963. tally retardedchildren. It allocated funds to purchase Hepatitis,which affected virtually every child in 375 acres of land located at Willowbrook on Staten Willowbrookas well as manyemployees, proved to Island and authorized the construction of facilities be a more difficult problem.It was essentialto ac- to care for 3,000 mentally retardedchildren from the quirenew knowledgeabout the naturalhistory of greater-NewYork metropolitan area. The institution, this disease- knowledgethat mightlead to its ulti- completed in 1942and designatedWillowbrook State mate control. School, was taken over by the federal government The studies duringthe subsequenttwo decades to meet an urgent need for an army hospital to care for disabled military personnel from World War II. The U.S. Army Medical Corps renamed it the Hal- Receivedfor publicationSeptember 10, 1985,and in revised loran General in honor of the late Colonel form October22, 1985. Hospital Paul a Pleaseaddress requests for reprintsto Dr.Saul Krugman, New Stacey Halloran, U.S. Army medical YorkUniversity School of Medicine,550 First Avenue, New York, corpsman. New York,10016 After the war ended-in 1945, there was consider- 157 158 Krugman able political pressure to retain Halloran General State School and LetchworthVillage wereintroduced Hospital as a VeteransAdministration hospital. The into Willowbrook by patients who were transferred conflict between the needs of the VeteransAdminis- from these institutions. tration and the needs of the New York State Depart- ment of Mental Hygiene was described in the fol- Recognition of Hepatitis as an Endemic Disease lowing letter sent by Governor Thomas Dewey to General Omar Bradley,who was director of the Vet- The occurrence of so-called infectious hepatitis was erans Administration at that time. first observed in 1949. Later, in response to extraor- from the Everyyear in the Stateof New York,thousands dinary pressure many parents, patient popu- of childrencome into this worldwho arementally lation increased rapidly in subsequent years; it ex- and physicallydefective and feeble minded,who ceeded 3,000 in 1953, 4,000 in 1955, and eventually nevercan becomemembers of society.They require it exceeded 6,000. In his report to a joint legislative constantcare, both medicallyand physically,and committee on mental and physical handicap, the late in many cases, for social, psychologicaland eco- Dr. Jack Hammond, director of Willowbrook State nomicreasons, few parents can afford to placethem School stated: in privateinstitutions. Even if suchinstitutions ex- istedin sufficientquantity, the resultis thatthe state The overcrowdedconditions in the buildingsmake must take responsibilityfor the careof these chil- care,treatment, supervision and possibletraining drenand do so witha highdegree of tendernessand of the patientsdifficult, if not impossible.When attention. the patientsare up and in the day rooms,they are At present,the Stateof New Yorkoperates two crowdedtogether, soiling, attackingeach other, downstateinstitutions for the careof such infants abusingthemselves and destroyingtheir clothing. and children.One is the WassaicState School in At nightin manyof the dormitoriesthe beds must Duchess and the other is LetchworthVillage in be placed togetherin order to providesufficient Rockland County. There are severalother state spacefor all patients.Therefore, except for one nar- schoolsfor mentaldefectives but theyare too over- rowaisle, it is virtuallynecessary to climbover beds crowdedand none is or can be equippedfor the ad- in orderto reachthe children. ditonal care of infants. Hundredsof infantsand childrenunable to care The residents of Willowbrook State School were for themselvesare sleeping on mattresseson floors the most severely retarded, the most handicapped, of these institutions.What is more seriousis that and the most helpless of those being cared for in the thereare to nine hundredinfants eight on the wait- New York state system. The population of about list for admissionand the StateCommission of ing 6,000 included 77%7who were severelyor profoundly MentalHygiene daily must deal with distracted par- retarded,60% who were not toilet trained, 39% who ents who seek to havetheir children placed in state institutions.The mail of the Commissionerof Men- were not ambulatory, 30% who had convulsive sei- and 64% who were of tal Hygieneis filledwith lettersfrom suchparents, zures, incapable feeding them- many of whom are veterans. selves. Thus, the conditions were optimal for the It seemsto me that we are now confrontedwith transmission of hepatitis, shigellosis, respiratoryin- these two conflictingobligations at Willowbrook. fections, and parasitic infections. The firstis that of the FederalGovernment to pro- By the early 1950s the director of Willowbrook vide hospitalcare for its veteransafter they are dis- and his staff were convinced that serious overcrowd- chargedfrom service.The secondis the obligation ing and an inadequatestaff werein great part respon- of the Stateof NewYork to carefor provide perma- sible for the increasing hepatitis problem. Their nently helpless infants. Obviously,Willowbrook statisticsindicated that the annual attack rate of cannot be used for both. hep- atitis with jaundice was 25 per 1,000 among the chil- Finally, on October 24, 1947, after a delay of five dren and 40 per 1,000 among the adults. Efforts to years, 10 patients from Wassaic State School and 10 correct this intolerable situation were unsuccessful. patients from Letchworth Village were transferred Society had created a problem, but it provided no to Willowbrook State School. Initially, patients were solution. It was during that period that my colleague, both transferredfrom other institutions and admit- the late Dr. Robert Ward, and I were asked to join ted from the community. In retrospect, it is appar- the staff of Willowbrook as consultants in infectious ent that the infectious diseases endemic in Wassaic diseases. We were not qualified to deal with the so- WillowbrookRevisited 159 cietalproblems, but we believedthat we could help abilityof removingmy child from Willowbrook State control the existingmedical problemof hepatitis. School so that he/she can live at home."A total of 24 parentsresponded, and only two childrenwere taken home at that time! Identificationof the HepatitisProblem in Willowbrook The WillowbrookHepatitis Studies Our first objectivein 1955was to carryout an ex- tensiveepidemiologic survey. We were fortunate be- After one yearof carefulobservation and study in cause new tests to detect hepaticdysfunction
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