Running Head: IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

The Willowbrook Hepatitis Experiment:

Is it Ethical to Test on Children with Special Needs?
Mianna Sullivan
Salt Lake Community College

IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

Introduction
Is it okay to perform human testing on children with special needs, even if it is for a good cause?
At first glance, many people would see this as unethical, but two researchers, named Saul
Krugman and Joan Giles, seemed to think it was okay. The Willowbrook State School is an
institution that cares for children with special needs, in Staten Island, New York. A research
group, led by Saul Krugman and Joan Giles performed a study in 1956, researching viral
hepatitis. The studys test subjects were the children living at Willowbrook. The researchers were
interested in understanding the natural history of viral hepatitis: the mode of infection and the
course of the disease over time (Munson, 2012). This virus occurred virtually constantly in the
Willowbrook State School, making the children who lived there desirable test subjects. Some of
the incoming children were not infected, so Krugman and Giles deliberately infected them as
part of the experiment. [They] claimed that being an experimental subject was in the best
medical interest of the child, for not only would the child receive special care, but infection with
the milder form of hepatitis would provide protection against the more virulent and damaging
forms (Munson, 2012). In the earlier phases of the study, parental consent was obtained through
a letter or orally. In the later phases, parents were invited to discuss the study with the research
staff-including the physician, nurses, and psychiatric social workers. The parents were permitted
to consult with their childs physician, and allow their children to become test subjects if they so
desired. This study was reviewed and approved by the New York State Department of Mental
Hygiene, the New York State Department of Mental Health, the Armed Forces Epidemiological
Board, and the human-experimentation committees of the New York University School of
Medicine, and the Willowbrook School[and] although they were under no obligation to do so,
they chose to meet the World Medical Associations Draft Code on Human Experimentation

IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

(Munson, 2012). This research study has been recognized as very valuable in furthering the
understanding of viral hepatitis, as well as how to treat it. However, the ethical dilemma in this
case is whether or not it is right to use children with special needs as test subjects. Researchers
obtained informed consent from the parents before moving forward, and the children who were
test subjects received special care and were protected from a more damaging form of the viral
hepatitis, because they were given a milder form. The study was also approved by multiple
health associations. This study was scientifically beneficial, allowing scientists to understand
viral hepatitis, and how to treat it. Despite all the positive qualities of the study, is it truly ethical
to test on children who have special needs?
Thesis
Because this studys positive aspects far outweighed the negative aspects, it was ethical for
researchers to conduct it. Researchers obtained the informed consent of the childrens parents,
approved this study with multiple medical institutions (and even chose to get approval from an
institution not required), and the children received special care. This study allowed scientists to
gain additional knowledge regarding viral hepatitis, and how to treat it. Most importantly,
although the children being tested were subjected to this infection, they had the potential to
benefit greatly from it, because the researchers were learning how to efficiently treat it.
Body
According to Mayo Clinic, viral hepatitis is a highly contagious liver infection caused by the
Hepatitis A virus. The virus is one of several types of hepatitis viruses that cause inflammation
and affect your liver's ability to function" (Clinic, 2014). It is treatable by a medical professional,
and preventable by a vaccine. The virus can be spread from contaminated food or water, or by

IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

being in close contact with someone who is infected. Fortunately, there is a high success rate
when being treated for this virus.
The researchers had received informed consent from the parents of the test subjects, who were
given the opportunity to meet with the research staff, and allowed to consult with their childs
doctor before making their decision. In doing so, the parents had been informed of benefits and
risks, and understood this information. Consent was required from the parents, because the
students were under the age of eighteen, and were not mentally competent to make the decision
on their own.
The predictions that the students would return to a normal (non-infected) life were high, because,
according to the Centers for Disease Control and Prevention, depending on the severity, the
illness can [last] a few weeks toseveral months (Prevention, 2016), but would not be
permanent. There are biases that may prejudice the providers evaluation of the patients quality
of life. Being part of this study improved the childrens quality of life because they were treated
with special care and were infected with the milder form, which would provide them with
protection against the more serious form. People may argue that because the children had special
needs, they did not have a great quality of life anyway, so it was not important to improve it by
learning more about a common disease they had. However, it is important to note that all lives
are valuable, and researchers were performing this study not only to benefit the children at
Willowbrook, but to also benefit all people with viral hepatitis. Thus, if the medical community
knows more about this condition and how to treat it, it will profit those infected with it.
Parties other than the researchers, such as parents, had an interest in clinical decisions, but could
not interfere once the trial had begun. However, parents were permitted to revoke their consent
any time before the study began. Because this was a study, rather than parents seeking medical

IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

treatment, there were little or no financial factors that created conflicts in clinical decisions. Due
to this same reason, there were few or no problems of scarce health resources that might affect
clinical decisions. The only issues of health and safety that may have affected clinical decisions
would have been if the trial did not go as planned, and test subjects were in danger. There were
likely very few or no legal issues with this experiment that may have affected clinical decisions,
because the researchers attained approval from multiple medical institutions, as well as the
Willowbrook school, in advance.
Another plausible option that was available to researchers was to use different test subjects. They
could have gathered adults, who did not have special needs, who were infected with the disease,
along with other adults not infected, but willing to be part of the trial. An advantage to this option
is that informed consent would be obtained from subjects over the age of eighteen. Another
advantage is that they would not have special needs, and therefore, would understand what was
happening during the study, as opposed to the subjects at Willowbrook, whose parents
understood what was happening. A disadvantage to performing the trial this way, is that it may be
difficult to get the word out about the need for test subjects, and therefore, the study may not
have had enough people. Leading the experiment at the Willowbrook school was advantageous
because there was a dense population there who were already infected with the virus.
Conclusion
In conclusion, it was ethical for the researchers to conduct this experiment, because the
advantages highly outweighed the disadvantages. Not only did the research subjects benefit from
this study, but so did other people with the virus, as well as health care professionals who treat it.
It is ethical to conduct experiments on people, even if they have special needs, or are children-or
both-if the experiment does not harm them, proper informed consent is obtained, approval is

IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

acquired from the necessary medical or political institutions, and the research subjects are treated
with the utmost respect. The experiment should also allow scientists and doctors to understand
how to advance their work to improve society. These criteria not only have significance to this
specific case, but to all future cases in which research subjects are required.

IS IT ETHICAL TO TEST ON CHILDREN WITH SPECIAL NEEDS?

Bibliography
Clinic, M. (2014, September 9). Hepatitis A. Retrieved August 3, 2016, from
http://www.mayoclinic.org/diseases-conditions/hepatitis-a/basics/definition/con20022163
Prevention, C. (2016, May 23). Hepatitis A Questions and Answers for the Public. Retrieved
August 3, 2016, from http://www.cdc.gov/hepatitis/hav/afaq.htm
Munson, R. (2012). Intervention and Reflection. Boston, MA: Clark Baxter.