Thursday, March 21, 2013

Part 2 of Henrietta Lacks Artifact-Nuremberg Code


Artifact Description: The artifact I chose was the historical principles of ethics called the Nuremberg Code, which was proposed in 1947. These ethical guidelines for human experimentation were a result from the trial of twenty-three Nazi Doctors who were charged with doing medical experimentation on Jewish prisoners in concentration camps without their consent. The Nuremberg Code was never a law, but was the first document to advocate informed consent and voluntary participation. It has been adopted as part of policies in research done today. These guidelines enforce the issue of ethics, consent, and full disclosure of information to the patients receiving treatment. I think that this artifact exemplifies how patients should be treated, and unfortunately the codes were not put into law. They were not even taught in medical schools after sixteen years of their creation when Henrietta Lacks was exploited. I also have included a timeline from 1951 to 2005, which categorizes various discoveries that resulted from Henrietta Lacks’ tissue sample.
Critical Analysis: In Part Two of The Immortal Life of Henrietta Lacks, called Death the issue of patient consent and racial inferiority in medical institutions continues. “Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal (pg. 89).” Henrietta was never asked by doctor if he could take her cancerous cells, but after she had died her husband was questioned in regards to an autopsy on Henrietta’s body. They never disclosed any information but that it would help his children and grandchildren in cancer research. So how could he say no to that? Even after Henrietta’s death the family was kept in the dark, but why were scientists keeping quiet about the source of the cells. Was it because Gey in a way knew it was unethical and that the family would be upset or did he not see it as a big deal since Henrietta received free treatment and in exchange he could take her cells? I think another possibility is that he didn’t want the public knowing the cells came from a black woman.
                  In 1951 Henrietta Lacks dies and a year later The Tuskegee Institute opens the first “HeLa factory” to supply cells to researchers and laboratories. Within a few years, Microbiological Associates began selling HeLa cells for profit, making a multibillion dollar industry. The troubling realization is that Henrietta’s family was struggling in poverty, barely able to afford medical care and they didn’t even know their mother’s cells were famous and making money for medical companies. As Skloot explains, “black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the campus- and at the very same time- that state officials were conducting the infamous Tuskegee syphilis studies (pg. 97).” This is just ironic that even though the authority of white scientists and doctors take advantage of the African American race, an African American woman is the source to the breakthrough in many scientific findings. The issue of race comes back into play in regards to using African American cells and that they must be the problem.
                  African Americans were viewed as ignorant and to instill fear in the patients would have been harder for the doctors to do what they wanted so they would not ask for consent or be completely truthful. Many doctors tested on slaves through drug use and surgeries, often without anesthesia. During this time with the Tuskegee Trials going on, after the abusive history of slaves by researchers, and many African Americans believing that the Johns Hopkins Hospital kidnaped black people for research were several reasons why they were afraid of medicalization. The authority of white males projects fear and mistreatment to African Americans. The Nuremberg Code should have been more widely used in policies, not just something to disregard. It was argued that the Nuremberg Code did not apply to the United States, but it was written by the International Military Tribunal, including the United States. I think this was an excuse some doctors used to get out of trouble when they didn’t follow guidelines.
 It wasn’t until 1957 that the term informed consent was used. An example from Skloot demonstrates a man under the impression he was having a routine procedure until he woke up paralyzed from the waist down. The doctor never divulged any risks to the procedure. Informed consent involves the doctor giving full knowledge of the procedure to the patients. In another instance, Chester Southam injected cancer cells into patients without their consent or knowledge was a violation of the Nuremberg Code and the rights of human beings. I think that American doctors did hear about the Nuremberg Code, but decided not to follow it because it wasn’t law. Thus, allowing them to continue in the course of finding success in their experimentations no matter the cost to the patient or subject in their eyes.

 The Nuremberg Code 
 1. The voluntary consent of the human subject is absolutely essential.

This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved, as to enable him to make an understanding and enlightened decision. This latter element requires that, before the acceptance of an affirmative decision by the experimental subject, there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person, which may possibly come from his participation in the experiment.

The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.
2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.
3. The experiment should be so designed and based on the results of animal experimentation and knowledge of the natural history of the disease or other problem under study, that the anticipated results will justify the performance of the experiment.
4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
5. No experiment should be conducted, where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.
6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.
7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.
8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.
9. During the course of the experiment, the human subject should be at liberty to bring the experiment to an end, if he has reached the physical or mental state, where continuation of the experiment seemed to him to be impossible.
10. During the course of the experiment, the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him, that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject. 
 "Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10", Vol. 2, pp. 181-182. Washington, D.C.: U.S. Government Printing Office, 1949.]

The link for the time line is bellow as well:
http://www.wired.com/magazine/wp-content/images/18-02/st_henrietta_f.jpg

Questions:
1. Southam injected about a dozen cancer patients with HeLa cells, only telling them that he was testing their immune systems. What do you think about Southam injecting the malignant HeLa cells into individuals without any consent, and that he was only put on probation for one year?
Do you agree with the argument that “if the whole profession is doing it, how can you call it ‘unprofessional conduct’?

2. Why did George Gey decline to identify Henrietta Lacks for journalists? Do you think he felt guilty and knew what he did was unethical?
3.  Henrietta’s cells are replicated and sent all over the world, not many people stop to think these samples are from a human being. Her story was unknown to most at the time and scientists overlooked that aspect and thought of cells as tools in their experiment. Do you think the majority of doctors and scientists tend to see patients as specimens rather than as people?
4. Skloot explains how black residents near Hopkins have believed the hospital was built in their poor neighborhood for the benefit to the scientists, giving them access to research subjects. But, according to Johns Hopkins his purpose of the hospital was to help those who couldn’t get medical care. Do you think that Hopkins’s intentions of the hospital represent what occurred in the facility or would he have seen the treatment of the African American population as unethical?

-emothersell

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