Willowbrook Hepatitis Studies

For over forty years a study conducted on 600 African American at the Tuskegee Institute in Macon County, Alabama, examined the outcome of syphilis in African Americans. These participants were uneducated and destitute, so when they were offered anything free, they did not see the harm. Of the group of 600 men, 399 who had syphilis were a part of the experimental group, and 201 were control subjects. (About Us, (n.d.)) What is the ethical dilemma in this study of syphilis? The researchers picked illiterate subjects who did not understand they had not agreed to informed consent. All subjects should be informed of the dangers of syphilis such as it can lead to a variety of painful, long-lasting and fatal symptoms, such as infection in the nerve-system, or heart difficulties. To examine the individual risk and lethal development of the disease, the researchers deprived

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.

P2 Understand ethical issues relating to research in health and social care Ethical principles Protection from harm- In any health care setting it is always important to make sure that all the individuals in all the aspects of the area are being protected from harm. In any organization the most important policy is the protection policy this enables the staff to make sure that all the individuals feel safe. Protection from harm does not only mean being protected from abuse It could be protecting people's health and wellbeing and enabling them to live free from harm, neglect and abuse.

Nuremberg Code of 1947 was written after the Second World War, in which German physicians who participated in the Nazi concentration camps were prostituted for unethical human experiment. ("Nuremberg Code", n.d.) The Nuremberg code of 1947 contain ten points about proper consent, how the study should positive impact on population, the need for pre-existing knowledge, the avoidance of any harm or suffering to the participants and concluding the study if injury or risk for death occurs, if the risk exceed benefits the study needs to stop, the freedom to leave the study at any time if the participants are unable of continuing, and lastly, the staff must stop the study if they believe conditions are dangerous. (Post, 2004) Although the Tuskegee study started before the Nuremburg code of ethics were established, the Tuskegee study continue until 1972 in which the researchers ignored the Nuremburg code and continue with their unethical study. The researchers failed to properly inform the participants of the study and to obtain proper consent. Furthermore, the researchers cause harm to the Tuskegee participants by not providing them the proper treatment for their illness and not allow the participants to leave the study when they weren’t able to continue. Thus, unethical behaviors continue even when guidelines were provided to the researchers and the researchers failed to

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.

Ethics, in our society, are the moral principles that govern our behavior, dictating what is right from wrong. The specifics of ethics changes as values in our society change and evolve. This occurs in Rebecca Skloots book, The Immortal Life of Henrietta Lacks. One major reoccurring theme in the book is the lack of informed consent and autonomy. Fortunately, now there are safeguards which protect human rights in regard to health care and research. The Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, now part of the Department of Health and Human Services, created The Belmont Report, which is one such safeguard establishing principles for all human research (USDHHS, 1979). This paper will discuss the ethical issue of informed consent within The Immortal Life of Henrietta Lacks, the disregard to parts of the Belmont Report, as well as compare the role of the nurse in charge of Henrietta’s care versus the standards of care set for modern nurses.

De Bord, J. (2014). ETHICS IN MEDICINE University of Washington School of Medicine. Retrieved from https://depts.washington.edu/bioethx/topics/consent.html

However, the consent of subjects is enforced by the respect for the individuals used in research and the bioethicists that police peer-reviewed articles. A small hope has sprung forth from possible enforceable regulations that would require permission for the use of all human blood and tissue used in research. This has been proposed by the federal government. Sadly, neither the current standing nor the possible future of required consent is very well known in the general population. The lack of concern when it comes to these issues by the general population can be attributed to a simple problem, lack of knowledge.

Respect for human dignity includes two rights; the right to self-determination and the right to full disclosure. When conducting a research study these two rights must be maintained to ensure that the participants are not coerced into participation and that they are making the choice of their own free will. Patients must be provided with all the information necessary to make an informed decision and voluntarily participate. No deception or concealed data collection can be done because it will violate the patients’ rights.

The Nuremburg Code of ethics, was established after human research atrocities in World War II created a standard of ethics. This ethical standard provided the general public with confidence and trust in that human participants involved in research will be respected and receive moral treatment. Unfortunately, the Tuskegee study undermined established ethical boundaries and it violated many aspects of informed consent, autonomy, nonmaleficence as well as many other ethical principles (Riggs,

Obtaining an informed consent is a vital part of current health care. This document lists out several key pieces of information for both the patient, Provider, and the ancillary staff that also access the document during the procedure process. However, obtaining informed consent has not always been the practice norm and in research, informed consent carries different specifications.

The Willowbrook Hepatitis Study was conducted at the Willowbrook State School in Staten Island, New York. This school housed and cared for mentally disabled children, however had high rates of Hepatitis among the staff and students due to the overcrowding of the facility and unsanitary conditions.

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

“Respect for human beings involves giving due scope to peoples capacity to make their own decisions. In the research context, this normally requires that participation be the result of a choice made by the participants” (NHMR, 2007, p.3).  Freegard 2012 (p.60), states that “respecting the rights of others,” includes a responsibility for Health professionals “to let others know about their rights” and that this forms the basis of an informed consent.

Nuremberg Code is a set of 10 sophisticate principles regarding ethical clinical research on human being (Grodin, 1994). It is mainly for protection of subjects’ human right (Shuster, 1997), such as compulsory of informed consent and the equal authority of subjects as the physician-researcher to end the experiment.