Back To CourseBiology 104: Bioethics
8 chapters | 86 lessons
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Julie has taught high school Zoology, Biology, Physical Science and Chem Tech. She has a Bachelor of Science in Biology and a Master of Education.
Little was known about hepatitis in the 1950s, so when a school for disabled children in New York had a hepatitis epidemic, the New York School of Medicine led by Dr. Saul Krugman, decided to conduct studies involving the children. Much of what was done would be considered unethical today, but let's take a closer look at the experiments that were conducted, as well as the ethical issues.
Hepatitis is a term used to describe inflammation of the liver. There are different causes, many of which are viral. The Willowbrook experiments resulted in the discovery of two of the viral strains: hepatitis A and hepatitis B. Hepatitis A is caused from ingesting food contaminated by feces or from close contact with an infected person. Hepatitis B transmission is primarily through sexual contact or exposure to infected blood, such as from the sharing of needles.
Willowbrook School, located in Staten Island, housed children with mental disabilities. Hepatitis was a huge problem for students and staff at Willowbrook, with 30 to 50%, of students becoming infected, although this percentage has been contested. Because of the high rates of infection, Dr. Krugman decided to involve the children at Willowbrook in his studies.
Before the studies, it was thought that there were two types of viral hepatitis. There were some ideas on how each was transmitted. However, doctors were very limited on how to diagnose the disease.
The studies began in the 1950s and lasted for 15 years. Children aged 3 to 10 being housed at Willowbrook were the subjects of the study. Dr. Krugman noticed that students who were infected with hepatitis recovered, and then appeared to be immune to future outbreaks of the disease. He decided to take antibodies from the blood of infected children and use them to try to create immunity, or protection, from hepatitis.
Antibodies are produced by the body in response to an infection, and they are part of the immune system's response to rid the body of diseases, like hepatitis. Dr. Krugman deducted that injecting uninfected students with the antibodies would jumpstart their immune system, resulting in a milder case of hepatitis once they were exposed. In addition, the antibodies would protect the children from future outbreaks.
Dr. Krugman's research involved 700 students that were divided into two groups. Group 1 involved students that were already housed at Willowbrook. Some of this group was given the protective antibodies and some was not. Group 2 involved students that were new to Willowbrook. All of these students were given the protective antibodies. Some students in this group were intentionally infected with hepatitis, obtained from sick students, and some were not.
Since some of the symptoms varied, Dr. Krugman learned that there were two forms of hepatitis (A and B). The students who had the protective antibodies and were purposely infected with hepatitis had mild symptoms compared to students who acquired hepatitis naturally and did not have the protective antibodies. This understanding paved the way for vaccinations for hepatitis A and B that are used today.
There has been much debate on whether or not Willowbrook was ethical. Let's examine some of the arguments, starting with the unethical standpoint.
Mentally disabled children can't advocate for themselves or fully understand the risks involved in such a study. Furthermore, it's unethical to purposefully infect a person with a disease if that person doesn't understand the risks. The adults at Willowbrook weren't used in the experiment. Adults can consent and many of the adults at Willowbrook had contracted hepatitis. The way new students were recruited was questionable. Willowbrook was over capacity and denying admission in their general unit; however, they offered space in their 'hepatitis wing' if parents agreed to allow their children to enter the study. Parents who needed a place for their child had little choice.
Just because a student was enrolled in Willlowbrook didn't mean he or she would be infected naturally. Dr. Krugman may have exaggerated the rates of infection and suggested that students would be infected at the school no matter what, so being involved in the study wouldn't cause further harm. When researchers understood the mechanism for hepatitis transmission, they should have worked to clean up the school instead leaving it as is and using it as a means to find a vaccination. Uninfected students who were enrolling at the school shouldn't have knowingly been placed in an environment where they would contract hepatitis, either naturally or through purposeful exposure.
Now take a look at the defense of the studies:
A greater understanding of hepatitis, including an understanding of how to protect people against the virus was achieved through the studies, the vaccination, and further understanding of viral transmission. Reduction in the rates of hepatitis at Willowbrook was achieved due to the study: 80-85% reduction in infections. The hepatitis at Willowbrook was a mild form, and no children died. Only the mild form was used in the experiment, so the risk was relatively low. The children involved in the study received special medical care and were observed closely. Parental consent was required, and accounts from the researchers suggest that the details of the studies were outlined, including infecting some with the disease.
While many suggest that Dr. Krugman should have cleaned up Willowbrook instead of experimenting with the children, advocates to the study suggest that the best solution for the hepatitis outbreak at Willlowbrook was to provide immunity to the children, which would be more effective than simply cleaning up the facility. In addition, dealing with the outbreaks was far more challenging than simply cleaning up. It was often difficult to determine who had the disease, thus difficult to isolate and prevent the spread of hepatitis.
Hepatitis, or inflammation of the liver, was the focus of a 15-year study that began in the 1950s at Willowbrook, a school for mentally disabled students located in New York. There has been much debate on whether the studies at Willowbrook were ethical. Take a moment to review the unethical standpoint and then the defense of the studies:
And now for the defense of the studies:
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Back To CourseBiology 104: Bioethics
8 chapters | 86 lessons