When a person seeks medical attention they go with the hope that their personal rights will not be violated with the belief that doctors will uphold their personal standards. Unfortunately, this is not always so for people who visit the hospital. There are documented cases in United States history involving African Americans being experimented on for the greater good without their knowledge or consent, and some of the most heinous cases involve doctors injecting their study groups with life threatening diseases. What happens when good science goes bad and who has the right to relegate the status of another human being as less than? In this research paper we will examine a clinical testing case study featuring the violation and exploitation …show more content…
of more than 400 African Americans’ ethical rights for advancement of medical gain and research, and the detriment and harm of a community. Statement of the Problem In the Tuskegee Syphilis Study, which lasted from 1932-1972, the civil liberties of more than 400 African American men were violated by involuntarily becoming the subjects of a syphilis study conducted by the United States Public Health Service (PHS).
The experiment lasted more than forty years and did not garner media attention until 1972, when it was finally made public by Jean Heller of the Associated Press to an outraged nation. The fact that a medical practitioner would knowingly violate an individual’s rights makes one question their bioethical practices. What gives doctors the right to make a human being a lab rat? When both of these case studies began in the earlier half of the 20th century, African Americans were still fighting for the most …show more content…
basic Running Head: QUESTIONABLE 3 civil rights, and treated as second class citizens. Their less than human status, in the eyes of the white majority, made them a perfect group for clinical status because they were seen as no more than an orangutan. Historian Alan Brandt states, “There can be little doubt that the Tuskegee researchers regarded their subjects as less than human,” (Pence 191). The problems affecting the Tuskegee Syphilis Study raise a slew of questions in the bioethics debate. Research Questions and Hypotheses This research seeks to answer the following questions: Should people be told if they are being experimented on if it is for the greater good? Were ethical rights violated? Should laws be formulated to who owns the rights to DNA? How much does race matter in the bioethical debate? If a doctor has the treatment for a disease, is it right for him to deny a patient treatment solely to see the outcome of an untreated result? Why were no whites involved as patients in this study? Do doctors have the right to play God by interrupting and changing the course of the lives of these men? These are the issues that were of concern for the Tuskegee Syphilis Study. The PHS followed the patients, or victims for lack of a better word, during the duration of the Tuskegee experiment by, “actively keeping them from many forms of treatment (including penicillin when it became available in the late 1940s), never giving them a clear diagnosis, but providing them with the watchful eye of a nurse as well as exams (including a diagnosis spinal tap), placebos, tonics, aspirins, and free lunches,” (Reverby 2). The victims were told that they had “bad blood ” Running Head: QUESTIONABLE 4 and the Tuskegee study did not involve treating the disease at all- it involved monitoring the effects of syphilis left untreated on African American men. The most important question for us to consider is how do we refrain from repeating the “racism, medical arrogance, and state power” (Reverby 4) that encompassed the decision making in the Tuskegee study from occurring in the future? How far have doctors and bioethicists truly come? Definition of Terms While reviewing this paper, there will be terms that are specific to the Tuskegee Syphilis Study that must be defined in reference to this research. The Tuskegee study occurred in Macon County, Alabama, near Tuskegee County. The experiment involved 399 men who had syphilis and 201 who were syphilis free. The Tuskegee study was a “retrospective” rather than “prospective” (Reverby 2) study that compared the syphilis treatment of African American men to that of white men and women in Oslo, Norway in the early 1900s, who had little treatment available. Syphilis is a contagious venereal and congenital disease that is caused by parasitic bacteria called spirochete. Syphilis, when left untreated, can affect any organ or tissue in the body, such as skin, mucous membranes, bones, nerves, liver, and the genitals. Bioethics is a branch of the field of ethics, which is the study of right and wrong. Bioethics studies the ethical and philosophical implications of biological procedures. A study, according to physiologist Claude Bernard, is an observation of what would normally occur in nature, while an experiment is a factor that is manipulated within an experiment, (Pence 192). The Tuskegee study is a violation of bioethics- the field emerged as a result of the Tuskegee Running Head: QUESTIONABLE 5 Syphilis Study! Review of the Literature The Tuskegee Syphilis Study spawned a variety of books written on bioethics of the Tuskegee study, and forever changed the regulations of the medical field.
The most important book that was written is Bad Blood: The Tuskegee Syphilis Experiment by James H. Jones because it not only chronicles the disparities of experiment but it highlights the relationship between syphilis, the modern AIDS virus, and the African American community. Jones accounts for one of the worst experiments conducted by the United States Government. After treatment with penicillin became available, it still was withheld from the patients. Some would fault the patients for not getting the treatment, but most of the participants were illiterate. Tuskegee’s Truth edited by Susan M. Reverby has different articles and interviews from patients. Senator Kennedy also interviewed survivors from the experiment. In 1973 the government settled out of court, compensating survivors, heirs to survivors, and provided treatment for the victims. By this time most of their lives were already spent, and valuable time wasted. They were just told they had “bad
blood.” The Tuskegee Syphillis Study- What Happened? The Tuskegee Syphilis Study occurred because of preemptive racist assumptions of the African American race. Physicians in 1914 believed that because African Americans have strong sexual appetite , and African Americans during this time “were seen as dirty, shiftless, promiscuous, and with bad personal hygiene…[and], syphilis was a natural consequence of the innately low character of blacks, who were ‘a notoriously syphilis- Running Head: QUESTIONABLE 6 soaked race,’” (Pence 191). The Tuskegee study began during the Great Depression and was only funded because Tuskegee, Alabama had the highest syphilis rate of 40 percent (Pence 192). Scientists believed that it is important to know the origins of a disease, and because they believed that syphilis was an African American disease. Out of the 40 percent of Tuskegee infected with syphilis, 20 percent of the infected were African American and chosen for the Tuskegee Syphilis Study During the Tuskegee study, victims were provided with free lunches, physical exams, and burials, which alleviated some of the strain on poor African Americans, in exchange for an autopsy that doctors would conduct at the time of death to see what damage to the body was from syphilis. There was no permanent doctor for the Tuskegee study and only an African American nurse was provided as a constant medical provider. Victims’ information in the study and control groups were often mixed up and doctors would not visit consistently, meaning that there would be years in between visits. The purpose of the study was not to provide treatment to actual medical treatment to the victims. In 1943, the penicillin vaccine became available, just 11 years after the study first began. When the penicillin vaccine became available, doctors involved in the study contacted local draft boards to keep victims of the study from being drafted into the war to insure that they did not receive treatment for the disease and interrupt the study. None of the victims received the vaccine or were advised to take the vaccine to cure their disease. The lack of treatment occurred into the 1970s, with these men left to die an agonizing death. At the time when the study was initially discovered in 1966 by Peter Buxton, all Running Head: QUESTIONABLE 7 of the doctors involved in the Tuskegee study were moved to the Center for Disease Control (CDC) in Atlanta, Georgia. An interesting fact about the study is that the Macon County Medical Society switched from an all-white membership in the 1930s to nearly all-African American by the 1960s. When the studies were revealed to the Macon County Medical Society in 1969, the society voted to keep the study going. Frustrated with the attitudes of the doctors involved in the study, Buxton informed his friend and Associated Press reporter, Jean Heller, on July 26, 1972. Heller’s story “described a study run by the federal government in Tuskegee, Alabama, where poor, uneducated black men had been used as medical ‘guinea pigs,’” (Pence 196). The CDC’s Venereal Disease Chief, J. D. Miller refuted Heller’s story on the basis that the victims were not denied treatment, they just were not offered or made aware of it, meaning that he did not help pull the trigger, he allowed the victims to waste away after being shot. The victims of the Tuskegee study were compensated, 10 million dollars, after nearly 40 years of neglect for the purpose of scientific study.
Bad blood is a book that was written James H. Jones who is an associate professor of History. The book narrates on how the government through the department of Public Health service (PHS) authorized and financed a program that did not protect human values and rights. The Tuskegee Syphilis Experiment which was conducted between 1932 and 1972 where four hundred illiterate and semi-illiterate black sharecroppers in Alabama recently diagnosed with syphilis were sampled for an experiment that was funded by the U.S Health Service to prove that the effect of untreated syphilis are different in blacks as opposed to whites. The blacks in Macon County, Alabama were turned into laboratory animals without their knowledge and the purpose of the experiment
The book, Bad Blood: The Tuskegee Syphilis Experiment, by James H. Jones, was one of the most influential books in today’s society. The Tuskegee Syphilis Experiment study began in 1932 and was terminated in 1972. This book reflects the history of African Americans in the mistrust of the health care system. According to Colin A. Palmer, “James H. Jones disturbing, but enlightening Bad Blood details an appalling instance of scientific deception. This dispassionate book discusses the Tuskegee experiment, when a group of physicians used poor black men as the subjects in a study of the effects of untreated syphilis on the human body”(1982, p. 229). In addition, the author mentioned several indications of discrimination, prejudice,
According to the Belmont Report (1979), justice is relevant to the selection of subjects of research at two levels: the social and the individual. Skloot (2010) describes how “Gey took any cells he could get his hands on” and how “TeLinde began collecting samples from any woman who walked into Hopkins with cervical cancer” (p. 30). These two doctors did not exhibit fairness in their selection of subjects. Dr. TeLinde was collecting samples from women on the color ward and did not consider the appropriateness of placing further burdens on already burdened persons. The women whose tissue samples are being gathered for research are the women who will most likely be the last to benefit; because more advantaged populations (wealthy and white) will initially be the primary
Ethical violations committed on underprivileged populations first surfaced close to 50 years ago with the discovery of the Tuskegee project. The location, a small rural town in Arkansas, and the population, consisting of black males with syphilis, would become a startling example of research gone wrong. The participants of the study were denied the available treatment in order further the goal of the research, a clear violation of the Belmont Report principle of beneficence. This same problem faces researchers today who looking for an intervention in the vertical transmission of HIV in Africa, as there is an effective protocol in industrialized nations, yet they chose to use a placebo-contro...
The story about Henrietta Lacks is the evidence that the ethics of medical processes need to be improved. For a long time, many patients have been victims of malpractice. Sometimes, the doctors still can do anything without the agreement from patients. Any medical institution needs to hold the integrity on any consent form that is signed by a patient. To summarize, the story of Henrietta Lacks could be the way to improve the standardization and equality of medical institutions in the future.
The study took advantage of an oppressed and vulnerable population that was in need of medical care. Some of the many ethical concerns of this experiment were the lack of informed consent, invasion of privacy, deception of participants, physical harm, mental harm, and a lack of gain versus harm. One ethical problem in this experiment was that the benefits did not outweigh the harm to participants. At the conclusion of the study there were virtually no benefits for the participants or to the treatment of syphilis. We now have
The Tuskegee Experiment is one of the unethical Health Researches done in the United States. The way the research was conducted was against people 's civil rights. Totally secretive and without any objectives, procedures or guidance from any government agency. During the time that the project was launched there were very few laws that protected the public from medical malpractice or from plainly negligence. Also the Civil Rights act did not pass until the 1960 's.
To begin, the ownership of the tissue should belong to the person until removed from the body with consent or no, which greatly complicates the issue. To illustrate, the instance where Dr. Jones at John Hopkins took samples of Henrietta's cervix tumor to use for cancer research by George Guy was a situation in which should be justified as the best course of action Dr. Jones took (53). Not only did the tissue taken provide the medical world a vital resource for research and study, but also it failed to have any negative effects on the deceased owner, Henrietta Lacks, yet many people found it as questionable. Moreover, the abuse of tissues taken from patients cannot be ignored such as the Moore v. Regents of the University of California Moore sued because he did not want the commercialization of his tissue and his doctor, Golde, did not inform him of the financial potential of his tissue before requesting consent; however, these abuses have demonstrated that the lack of “informed consent” when requesting tissue dona...
There is very much controversy surrounding the case of the very popular Henrietta Lacks. One of the major implications on the situation that people have a problem with is the lack of consent obtained by Johns Hopkins University and the doctors involved. All though it was not common place as it is in today’s society, many feel that it was not ethical to perform medical procedures without the patient and their family being given all of the knowledge regarding the situation. The tissue sample taken by doctor Howard W. Jones was unbeknown to the family which violates the ethical respect for the person that should be held. A sample of someone’s DNA is not anything that should be taken lightly or regarded as unimportant. It should have been a decision made by Henrietta, and had she of known of the procedure she may have voted against donating to research. This lack of incorporating Henrietta and her family caused there to be a dismal amount of respect for persons shown by the University and all
However, in this case, the medical researcher’s committed an ethical taboo by using a person’s corpse without theirs or their family’s knowledge or consent. In the article, “Henrietta Lacks and the HeLa Cell: rights of patients and Responsibilities of Medical Researchers”, written by Jessica L. Stump, the author acknowledges the collapse of individual post-mortem rights. To aid the advancements in medical research, “[her] cells have become the standard laboratory workhorse”(Stump 131) even to this day. As a result of the success of the researchers’ medical findings “the rights of her [own] family, [feel they are being] violated” (Stump 131) because they were never notified of Henrietta’s historical contribution. An Executive Director of the Presidential Commissions Lisa M. Lee, makes a harsh but valid comment in saying that “[t]he benefits of research have to outweigh the risks to the individuals involved” (Stump 131). Without the cures HeLa cells have done as a result of the denial of her individual post mortem rights, we could have faced countless more deaths to date, including the possibility of losing our loved
This point alludes to discrimination and asserts that medical research should include an equal number of subjects of various sex, race, age, and backgrounds in order to better the human race as a whole. By implementing these parameters into biomedical research, organizations can better civilization while doing so in an ethical manner. The Tuskegee Syphilis Study has raised numerous questions and concerns regarding regulation within professional trades. Doctors and physicians take a Hippocratic Oath and swear to help those around them. This experiment demonstrated why ethics and stringent control measures are required when people’s lives are at stake.
In the United States, the basis for ethical protection for human research subjects in clinical research trials are outlined by the Belmont Report developed in the late 1970’s. This document, published by the Nation Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, highlights three important basic principles that are to be considered when any clinical trial will involve human research subjects. They are; respect for persons, beneficence, and justice. (Chadwick & Gunn, 2004)
In the 19th and 20th centuries, researchers did not consider ethics when using minorities in research. For example, doctors tested drugs and new surgical techniques on slaves. The doctors did not even use
Englewood Cliffs: Prentice Hall, 1976. Call Number: HV4711.A56. American Medical Association. The “Animal Experimentation Benefits Human Health”. Animal Rights Opposing Viewpoints?
...to find out something when they use children. The Tuskegee experiment exhibit how cruel researcher can also be, and how racial society was in 1932. The experiments show what can happen without regulations. There should be values and regulations to guide research in these experiments. Concluding, some experiments have the tendency to destroy the lives of the humans that have been experimented on.