Exploring Bioethics - NIH Office of Science Education - National ...

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)