The Willowbrook Hepatitis Experiments By Dr. Saul Krugman

Have you or anyone around you ever been involved in an experiment that some would call unwanted or unethical? Perhaps maybe even it happening to young children, It may surprise you how often unethical experimenting has been documented throughout the nation no less worldwide, and no less to very young children. This has been happening for years throughout history and still even today. However, this is a very highly debated topic as what someone would constitute a certain experiment unethical, others may count it as perfectly normal. Whether it is the case of Dr. Lauretta Bender, or the ever so famous case of the University of Iowa Speech therapy experiment, you are sure to find various amount of cases of unethical

The Willowbrook research also contributed to the public debate over research ethics and the impetus for regulation” (NAP, 2004). This research does not downplay the egregious acts of the research or coercing family members or guardians to consent to the research study through allowing entry into the school via the experiment venue. The residents of the school suffered while being exposed to a live hepatitis virus and while living in severely unsanitary conditions with undertrained and unsupervised staff that performed acts of violence on residents of the school. “Children were sitting on the floor, some nude covered in feces, rocking back and forth making pitiful sounds. Willowbrook was a state school, yet there was very little education happening. This was simply a dumping ground for the city’s unwanted children. The staff, overwhelmed and under-supervised, resorted to prison-style control tactics: disruptive residents were confined in solitary ‘‘pits’’ and left for hours or were beaten with keys and sticks” (Starogannis & Hill, 2008, p. 89). Evidently the research setting was not the optimal setting; the research was performed during a time when guidelines were nonexistent. Protection of the residents was put aside to reach for a vaccine that would aid many more than were affected which places into question the ethical behaviors of the determining entities.

The art of medicine and curing diseases was not always approached in a scientific way. In fact, many advances occurred between 1919 to 1939, after technological advances allowed scientists to apply the scientific method to medical research. At this time, the ethics of using patients as test subjects either for new medicines or as samples for further testing were not considered. An extreme example of this was the Nazi’s using concentration camp inmates – including children – to run painful and invasive experiments. More modern examples are not so easy to identify as unethical, however. While amputating a leg to develop methods to deal with fractures and war wounds is obviously unethical, harvesting cells to develop a vaccine is not so clear cut, as the disadvantage to the patient is hard to identify. Coming from the various Nazi testing and especially the Nuremberg testing and trials, another code of ethics was developed, called the Nuremberg Code.

No one can unequivocally say that the children all had independent observers looking out for the best interests of the children. It inexcusable to not have followed federal law “because researchers felt the pressure of a medical crisis and knew there was great uncertainty as to how children would react to AIDS medications that were often toxic for adults” (Solomon, 2005). One of most troubling aspect of the article is then the inconsistency in whether risk of side effects where adequately conveyed to the children or their legal guardians. The inability to properly monitor for potential side effects in foster care children, should have made foster care children unfit candidates for a research study. Once resources became too scarce to be able to protect the safety of foster care children, the research should not have continued. The lack of transparency of the research information such as drug dosages, side effects or deaths is also troubling. Researchers cite medical privacy laws when they already violated federal laws by utilizing foster care

In this case study, there were a few incidents of violations of ethics. In 1998, Callahan recommends that researchers should follow the three ethical issues: Autonomy, beneficence, and human justice. Autonomy is the first ethical principle that a researcher should respect the participate and make sure that informed consent has been given. The participates of this study was not aware the risk or what the study was about and actually could not give consent legally because they were minors. Johnson and Tudor did not give full disclosure of this research to the minors, teachers, or matrons at the orphanage. Beneficence is the second ethical principle; the researcher should maximize

Due to the colonization and urbanization of Africa the disease began to spread quickly, inventions like the car and poor hygiene in hospitals allowed the space for the disease to become more widespread.

Based from this experiments, The Belmont Report Ethical Principles and Guidelines for the Protection of Human Subjects of Research was submitted in April 18,1979 to …….? (“Impact,” n.d.).

His father drove up to the grounds in a Cadillac and just let him out of the car with a note saying, Never want to see the kid again, do not notify in case of death.” ( Starogiannis, 2008, p.86). It is questioned how so many children and youth got to Willowbrook. According to archival analysis of Willowbrook resident case files historians conclude “that medical and legal processes, conditions in the family, and the macrosocial conditions of their admission—ability, gender, sexuality, class, and race—are the most promising contributing factors” (Hill, 2016, p.22). This overpopulation led to filthy conditions, overcrowded wards, and inadequate medical care. This inadequate care was slowly brought to attention by the press, a few of the horrible events that happened at Willowbrook included the death of a six year old boy as a result of malnourishment (Starogiannis, 2008), two female ward attendants were arrested for the beating of “three boy patients with a broomstick” (VanGelder, 1972), and high death rates due to asphyxiation (Starogiannis,

It is reported that a girl was banned from a public Catholic school, the girls was disabled and it was stated that her parents faced accusations of presenting a threat to the mental health of her teachers. Morgan Webb Liddle has cerebral palsy. The teachers at Sacred Heart College took legal steps that were of an "extraordinary' nature to bar the child from the Catholic school based on their feeing "stressed and harassed." (Lee-Potter, 2013, p.1) The teachers at the school filed a notice with the principal under the Occupational Health and Safety Act. Morgan was ordered to not attend school and her parents ordered not to contact the school. According to John Harding, Head of Cambridge

In current times, children are not getting infected with diseases in order to find curative vaccines, but they are being made part of clinical trials for studies of genetic screening, the enrollment of healthy children in studies of sibling bone marrow donation, and the use of hypothermia for neonates with asphyxia (Laventhal, Tarini & Lantos, 2012). These trial studies have become ethical dilemmas in pediatrics for various reasons, people believe that there are not strong enough regulations for these trials and also that children are not given the opportunity to make their own decisions, most of the time, because children are underage, parents are the ones who make the decision of making their children part of these studies. Current regulations for pediatric clinical trials only require the consent of one parent, unless they are high level risk trials, in which case both parents needs to give approval and the child must also assent. The issue of children given assent for high risk trials is controversial because how do we know that the children really understand the risks that are associated with the trials, do they fully understand that they could possibly get hurt and sometimes their lives can be in danger.

Human experimentation has a history of scandal that often shapes people’s views of the ethics of research. Often the earliest cited case is English physician Edward Jenner’s development of the smallpox vaccine in 1796,where he injected an eight-year-old boy child with pus taken from a cowpox infection and then deliberately exposed her to an infected carrier of smallpox. Although Jenner’s experiment was successful and it confirmed his theory, the method of

Science, medicine, and psychology are powerful tools capable of increasing human understanding of the world, curing diseases, or assisting individuals in living more fulfilling lives. The potential for good is drastic; however, a potential for hurt exists as well. Although history is full of stories documenting the positives of research, events of scientific research hurting individuals still haunt history. These events, including the Holocaust and the Tuskegee experiments, demonstrate instances where scientific research on human beings is clearly unethical and damaging. Due to horrific events such as these, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research published the Ethical Principles and Guidelines for the Protection of Human Subjects of Research, or Belmont Report, in 1979.

In the lawsuit “Guatemalans vs Johns Hopkins University” over 800 Guatemalans were deliberately infected with sexually transmitted diseases and then treated with penicillin in an experiment to see if this antibiotic would work in treating these diseases. Researchers from John Hopkins School of Medicine infected kids in an orphanage, prisoners and mental health patients without their knowledge with syphilis and gonorrhea. These experiments happened from 1945 to 1656 but were not discovered until 2010. In the article it talked about how the experiment was kept a secret and did not publish any findings on whether the penicillin worked or not, probably because it was unsuccessful. It also talked about how the Guatemalans that were infected and then no follow up treatment was offered nor information on what diseases they were infected with.

In my opinion, I find what Krugman and Giles did very unethical. I believe Krugman and Giles didn’t care about all the children whose parent that didn’t give consent. I feel that Krugman and Giles treated these children as if they were animals, because they were mentally ill. However, that didn’t give them the right to infect healthy children to farther their research. That research should had only been done on the children who already had hepatitis. If I were one of those parents I would have never consented to the research. Krugman and Giles made those parents believe it was the only way their child would get into Willowbrook faster by consenting to the injection. To me that’s like bribery, you do this and we will accept your child here. No research justify involving healthy children without letting a parent know what is going to happen to their child if they consent, and to me Krugman and Giles did not do

Hepatitis A is a liver disease caused by the Hepatitis A virus. It may cause fever, malaise, anorexia, nausea, and abdominal discomfort, followed within a few days by jaundice the disease ranges in clinical severity from a mild illness lasting 1–2 weeks to a severely disabling disease lasting several months. Good personal hygiene and proper sanitation can help prevent Hepatitis A. Transmission may occur by direct person-to-person contact; or from contaminated water, ice, or shellfish from contaminated water; or from fruits, vegetables, or other foods that are eaten uncooked, but which may become contaminated during handling. Hepatitis A can affect anyone