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Willowbrook Hepatitis ExperimentsBackgroundCopyright © 2009 Education Development Center, Inc. Exploring Bioethics.Permission granted for classroom use.Willowbrook State School in Staten Island, N.Y.,housed and cared for mentally disabled children.Dr. Saul Krugman from the New York UniversitySchool of Medicine and his coworkers began conductinghepatitis studies there in 1955 and continuedfor more than 15 years. Hepatitis was a majorproblem at Willowbrook for patients and staff, andKrugman believed that most newly admitted childrenbecame infected with hepatitis within the firstyear of residence in the institution. (More recentestimates put the risk of a child contracting hepatitisat Willowbrook at 30 to 50 percent.)Hepatitis A is a relatively mild disease affecting theliver. Symptoms include jaundice, fatigue, abdominalpain, loss of appetite, nausea, diarrhea, and fever. It isusually spread from person to person when someoneputs something in his or her mouth that has beencontaminated with the feces of an infected person.It was known at the time that the response to infectionwas milder in the younger children and thatonce infected, children were protected against themore damaging forms of hepatitis. Krugman was interestedin using gamma globulin antibodies (takenfrom the blood of hepatitis patients) as a way to createimmunity in others.Antibodies are produced by the body’s immunesystem in response to foreign substances. Krugmanthought that if a child was infected with hepatitisafter he or she had been injected with these protectiveantibodies, a mild case of hepatitis would result,and the child would have long-lasting protectionagainst future, potentially more serious, infections.His goal was to find the best ways to protect childrenfrom hepatitis.More than 700 children at Willowbrook were involvedin the studies, which fell into two categories.The first used children who were already at Willowbrook.Researchers injected some with protectiveantibodies (the experimental group) and did not injectothers (the control group). Then, they observedthe children’s degree of immunity to hepatitis.In another series of studies, researchers gave newlyadmitted children protective antibodies. A subset ofthese children were then deliberately infected withhepatitis virus (obtained from sick children). Thosewho had received protective antibodies but werenot deliberately infected served as the controls. Thechildren in this experiment were housed in a wellequippedand well-staffed facility where they couldbe given special care and be kept away from the othertypes of infections at the institution.As the studies progressed, researchers noticed differingsymptoms caused by different virus samples.They concluded that there are two strains of hepatitis,A and B. Hepatitis B is more difficult to passon to others because it is spread through blood andsexual contact. Hepatitis B can lead to long-term(chronic) infection.The children who were deliberately infected withhepatitis A virus had a mild reaction (a swollen liver,yellowing of the skin and eyes, and a few days ofvomiting and not eating). The researchers noted thatmany children would become infected during theirstay at Willowbrook, anyway. Children who naturallygot hepatitis from other children had worse symptomsthan those who got it from the study.The researchers obtained consent from the parentsof each child. Parents of children who participatedearly in the study gave consent after receiving informationprovided by Willowbrook orally and in writing.Parents of children who participated later couldmeet the research staff, tour the facility, discuss theprogram with the staff and other parents, and speakwith their own private physicians. Then, after severalweeks, researchers asked for the parents’ consent.Master 5.4 (Page 1 of 4)
Letter to ParentsThis is the letter parents received from researchers in the Willowbrook Study.November 15, 1958Willowbrook StudyStaten Island, New YorkDear Mrs. __________:We are studying the possibility of preventing epidemics of hepatitis on a newprinciple. Virus is introduced and gamma globulin given later to some, so thateither no attack or only a mild attack of hepatitis is expected to follow. This maygive the children immunity against this disease for life. We should like to giveyour child this new form of prevention with the hope that it will afford protection.Permission form is enclosed for your consideration. If you wish to have your childrengiven the benefit of this new preventive, will you so signify by signing the form.Copyright © 2009 Education Development Center, Inc. Exploring Bioethics.Permission granted for classroom use.Source: Rothman, D., and Rothman, S. 1984. The Willowbrook Wars. Cambridge: HarperCollins, pages 265–266.Master 5.4 (Page 2 of 4)
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NIH CurriculumSupplement SeriesGrad
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Education Development Center, Inc.D
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This material is based on work supp
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About the National Institutes of He
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Introduction
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activity of assessing different rea
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teaching strategies that will help
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2. The ability to distinguish an et
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quence of choosing one path over an
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Table 1. Assessing Student Justific
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Challenges in TeachingBioethics and
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How Exploring Bioethics Can HelpFor
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Prompts to encourage students to re
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Table 2d. Students say they already
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Resources forTeaching BioethicsBeau
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Table 3. Ethical Issues and Curricu
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Each module is divided into three d
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Table 4. Alignment with NSES Life S
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About the Web SiteThe Web site for
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1Module 1Bioethics Concepts and Ski
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• apply important ethical conside
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In Advance1Copies, Equipment, and M
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Teaching Sequence1Day 1: What’s i
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new medication, she is able to stay
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6. Read the list of Round 1 questio
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• With respect to performance enh
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LE/LE/LLE/LPoint out that some of t
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Organizer for Day 1: What’s in a
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Day 2: Four Key Questions1PurposeDa
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4. Emphasize that when bioethicists
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15. Ask students to list as many et
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Organizer for Day 2: Four Key Quest
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Encourage students to share example
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Activity 7:Using Ethical Considerat
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4. Ask a representative from each g
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Organizer for Day 3: Core Ethical C
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References and Resources1Informatio
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What Type of Question? ROUND 1—Et
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What Type of Question? ROUND 3: Eth
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Round 4Q9Should embryonic stem cell
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Oscar Pistorius—The Fastest Man w
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Four Key Questions and Statementof
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Carl’s CaseCarl listened to his t
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1Module 2Balancing Individual and C
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adopting vaccination policies that
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In Advance1Copies, Equipment, and M
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Teaching Sequence1Day 1: Exploring
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the key stakeholders, and taken int
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You may wish to highlight the dange
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ClosureAsk students to reflect on t
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Day 2: Community Immunity1PurposeOn
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10. Ask all students in the class t
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• While an unvaccinated person’
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ClosureRecap for students that the
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Tell only the students who were tag
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5. Divide students into pairs, and
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17. Share with students that becaus
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13. Note that the Boston and Dublin
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Teaching StrategiesYou may want to
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Ask each member of the pair to read
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1Centers for Disease Control and Pr
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Get Kids Vaccinated or ElseGet Kids
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Name(s)Station 2—Vaccine RisksDir
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Station 1: Vaccine-Preventable Dise
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MumpsBefore the mumps vaccine was i
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Station 2—Vaccine RisksNote: Like
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Smallpox VaccineThe smallpox vaccin
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Station 4—ExemptionsExemptions vs
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State Exemptions Allowed as of Fall
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Name(s)What are the ethical conside
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Vaccination Status CardsVaccinated
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Opting Out of a Vaccine—Variables
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Measles in DublinIn 2000, an outbre
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What are some of the different pers
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Issues Explored• What is the fair
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Day 3—What Is Your Recommendation
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Teaching SequenceNoteAssign this ho
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Teaching Strategies: Jigsaw Techniq
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Some students might think that the
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11. Explain to students that they w
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Inform students that they will now
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2. Tell them that one liver has bec
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6. If it does not naturally arise,
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Criteria relevant to allocating liv
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Organizer for Day 2: Identifying St
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Day 3: What Is Your Recommendation?
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Activity 9:Understanding Past and C
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ClosureReinforce to students that t
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Ask students whether they think the
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Liver Function and FailureHepatitis
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Name(s)Banting decided that he woul
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Name(s)The COC distributed the peni
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Name(s)The Admissions and Policy Co
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Liver and Liver-Transplant Fact She
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The Liver and Liver Transplants—C
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Patient ProfilesAnitaAnita is a 19-
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Additional Patient InformationAnita
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The United Network for Organ Sharin
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Comparing the Past and Current UNOS
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1Module 4Weighing Benefits and Harm
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An optional extension activity incl
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In Advance1Preparing the Envelopes
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Teaching Sequence1Day 1: Deciding t
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6. Explain that each student should
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Activity 2:Introducing Max’s Thyr
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See Teacher Support MaterialsSupple
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ClosureTo close the class, remind s
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1Activity 2: Introducing Max’s Th
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Activity 5:Who or What Will Be Affe
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Activity 6:Exploring the Relevant E
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11. Give each student a copy of Mas
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1Ask students, “What are some rea
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5. Have students, in pairs, quickly
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ReflectionDisplay the posters from
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1Reflection: Have students view the
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1Retinitis PigmentosaFoundation Fig
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Alzheimer’s Disease and Genetic T
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Name(s)Now, on your own, answer the
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VealVeal is meat from calves that i
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Assessing Harms, Benefits, and Pote
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Final Assessment of Alba’s CaseRe
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This curriculum supplementwas devel
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