The Legal and Ethical Issues in the Tuskegee Syphilis Experiment - Case Study Example

The Legal and Ethical Issue Dealing with the Tuskegee Syphilis Experiment The Legal and Ethical Issue Dealing with Tuskegee Syphilis Experiment All kinds of research require ethical issues because the research process brings a lot of tension between the rights of participants to maintain privacy, and the aims of the research especially when making generalizations for the benefit of others. In order to consider ethical issues in public health research and practice, we must acknowledge the legacy of the Tuskegee Syphilis Study. This is because the Tuskegee Syphilis study invokes the images, as well as reflects the ideas needed by the public health workers to provide services and conduct research (Jones, 1993). In addition, Tuskegee Syphilis study the longest non-therapeutic experiment in medical history, ever done on human beings. This research paper will examine the legal and ethical issues in the Tuskegee Syphilis experiment. In the 1920s, the United States medical service and Public Health Service argued that black and white people differed on how they responded to diseases. Thus, the PHS saw the need to study the response of syphilis on blacks and compare it to study done in Norway on syphilis in whites. In 1932, both communities started the Tuskegee experiment in order to determine the natural cause of untreated latent syphilis. This took place in Tuskegee, Macon County, in Alabama in which about 400 African American men participated. All the men involved in the study had syphilis and were matched against 200 uninfected African American men who served as a control group, and showed different clinical manifestation of syphilis because of their race. The main aim of the study was to examine the natural history of syphilis since about ninety nine percent of all the participants had not received any previous treatment; thus, it was not possible to duplicate this study type. According to Jones (1993), men involved in the experiment were made to believe that they were patients involved in a medical project and that they were being treated for their ‘bad blood’, that is, syphilis or anemia. Moreover, they were enticed with several offers of outstanding free treatments, as well as free medical examinations during the research process. Heintzelman (1996) argues that the researchers probably took advantage of the poor, rural setting of the Tuskegee community, which had high rates of illiteracy and poor socioeconomic status. Nevertheless, Jones (1993), believes that Macon county was chosen as the most suitable area for the study due to its high number of people infected with syphilis. The coordinator of the Tuskegee syphilis experiment was Eunice Rivers, who was an African America graduate from the Tuskegee Institute. She acted as the link between the government officials and the men who were participating in the study. Additionally, she helped in recruiting the participants to deal with their problems and secure their autopsies after death. She believed that the men in the study were better off in the study because they could access free painkillers, as well as free medical attention (Heintzelman, 1996). According to Caplan (1992), the experiment lasted for about forty years that included only a sporadic clinical reexaminations of the participants whereby a physician would show up in Tuskegee, but denied them anti-syphilitic therapy. Moreover, after the Second World War, many medical developments occurred in America, which included the creation of the National Institute of Health (NIH) that provided funds for carrying out experiments. However, most of the research done during that period did not use any informed consent, which was the same case with the Tuskegee syphilis experiment. For these reasons, the research process of the Tuskegee syphilis experiment violated many laws and regulations meant to protect people from harm. First, it is expected that any participant involved in a research project should be well informed for their consent. However, Heintzelman (1996) claims that, in the Tuskegee study, participants were not informed, but rather intentionally misinformed about the study. For instance, the participants were made to believe that they had bad blood, a term that referred to a number of diseases in that region. They were not told that they had syphilis, or given information about what it was, its transmission and treatment. According to the Belmont Report and the Nuremberg Code, it is a basic requirement to obtain an informed consent before conducting any human subject research. Thus, if informed consent was obtained during the Tuskegee syphilis experiment, then the study would have probably been ethical. Another ethical issue raised in the Tuskegee syphilis project was that the participants were not given the available treatment for their condition. It was an open requirement in the Tuskegee experiment that all the participants were not to receive any form of treatment for syphilis, which is a clear violation in the U.S. For instance, when penicillin was released in 1945 and declared a safe and effective treatment for syphilis, it was withheld from the participants in order to continue with the experiment. Moreover, the Public Health Service also prevented the treatment on several occasions, with the interest of extending the study and the effects of syphilis over the given time. Despite the creation of the Henderson Act in 1943, a public health law that required that all people were to be tested for the presence of venereal diseases and treated, the Tuskegee study still violated this law. It did not treat the participants even after penicillin was introduced as the best treatment for syphilis. In fact, Jones (1993) states that the experiment continued as if the new regulations, put in place by the public health service, did not exist. Additionally, in 1964, the World Health Organization formulated a set of guidelines that would be followed by researchers when human subjects during medical experiments known as the Declaration of Helsinki. However, the Tuskegee syphilis experiment still violated many of these guidelines in order to proceed with their research. For instance, according to Jones (1993), the number four of the Declaration of Helsinki stated that any research involving human subjects could not be carrying out unless the significance of its objective overshadowed the benefits. The Tuskegee syphilis experiment posed the risk of death to the 400 participants, which no amount of any scientific data is worth the loss of all those lives. Moreover, basic principle number five of the Declaration of Helsinki stated that the lives of human beings should be valued more than any medical experiment or science. Further, the basic principle number seven stated that any study or experiment that involved human subjects should be discontinued if the risks to the participants began to overshadow the benefits (Caplan, 1992). Thus, the Tuskegee syphilis study violated most of these rules mainly because they felt that the participants were stupid and illiterate to understand syphilis, as well as the experiment that was been conducted. For this reason, the researchers decided not to explain to them about the study; instead, they chose to bribe them with free medical examinations, transportation and food. During the forty years of the study, most men involved in the experiment had died of syphilis because they were in the last stage of syphilis when the study began. Others suffered complications and infected their partners who in turn transmitted it to their children. Some of those who had complications of syphilis passed away while only seventy four of the participants were still surviving before the experiment was stopped. Thus, in 1972, a committee that was established declared that the Tuskegee syphilis study was ethically unjustified, and the subjects should have been given the penicillin drug. The researcher who conducted the study selected individuals who had never been treated by a physician; thus, they were eager to receive treatment from real doctors, which made it easy for them to be cheated. For this reason, they were given placebos, tonic and aspirins that gave them the illusion that they were under treatment. However, when the Alabama state health officer joined the experiment, he insisted that subjects who tested positive for syphilis be treated. Hence, a minimal course of treatment that consisted of eight doses of arsenic compound and mercury pills was given, which was not enough to cure them, but it prevented further infections (Monette, Sullivan and DeJong, 2002). Initially, the study was to take six to twelve months, but the researchers realized that it would not be enough to examine the subjects periodically until their death, as well as to perform an autopsy on the bodies; thus, the period was extended. Some area doctors together with Nurse Rivers encouraged the dying participants to go to the hospital where they died. After their death, their family members would be asked for permission to allow autopsy to be performed on them. However, in 1935, the Mill bank Me-mortal Fund located in New York provided money, from which each family of the diseased would be given fifty dollars for burial expenses as a bribe so that they could allow doctors to perform an autopsy on their dead relatives (Heintzelman, 1996). Monette, Sullivan and DeJong (2002), argue that the Tuskegee syphilis study is an example of medical misconduct and transparent disregard for human rights. The researchers who conducted the study were well educated scientists and government physicians. These people were highly respected and even published their reports in the medical journals. This shows that the subjects in a research bear the burden of the experiment. The unethical issues raised above came to light in 1972 when Jean Keller wrote about it in the New York Times; hence, the experiment stopped. In 1973, a civil rights attorney Fred Gray filed a lawsuit against the government due to the Tuskegee syphilis study, which exploited the participants. Additionally, the lawsuit stated that the experiment had violated human rights granted to men under the constitution of the United States. However, the case never went to trial, but the American government accepted a settlement of ten million dollars, instead of the 8.1 million dollars that Fred Gray had stated. The living syphilitics who survived after the experiment were given about $37,500 while the families of those who died during the study received $ 15,000 per family (Monette, Sullivan and DeJong, 2002). Moreover, President Clinton apologized publicly to the survivors, and their kins. According to Monette, Sullivan and DeJong (2002), the Tuskegee experiment also portrayed how black people were abused in medical history, and how vulnerable groups of people are exploited in terms of ethnicity, gender, race, and even social class. It exploited the disadvantaged people in the society and especially the illiterate black sharecroppers from the poor community, which was suffering from malnutrition. The community also suffered from poor sanitation, lack of plumbing and dirty floors, high levels of morbidity, mortality and insufficient clothing and food (Monette, Sullivan and DeJong, 2002). The Tuskegee syphilis study is the most inhumane and unethical experiment in the United States. It lasted for almost forty years while violating the laws and regulations created by the United States Public Health Services, set to protect people from harm during research. Although, the study had started before these laws were created, the researchers were expected to end the study and treat their participants once the Henderson Act, as well as the Declaration of Helsinki, were established (Caplan, 1992). However, the researchers proceeded with the study while exploiting their subjects, which was already against the law. Today, in America, there are many laws and regulations that should be followed by researchers who want to conduct a study involving human subjects. For this reason, the Tuskegee syphilis experiment would never be allowed in America today because of the many violations of human rights that it would sustain. It would violate the Declaration of Helsinki, the Henderson Act, as well as many other guidelines that have been developed recently. For instance, Heintzelman (1996) argues that the National Organization for Human Service has created a set of rules that should be followed strictly by all human service workers. Additionally, all human workers are expected to respect the dignity of their clients. Also, they are obligated to avoid any experiment or treatment that would pose a risk to clients. Moreover, the American Counseling Association has currently created a Code of Ethics, required by all counselors in order to uphold the integrity of the profession (Jones, 1993). This involves the how research should be conducted including the state, federal and local laws concerning research with human subjects. This Code of Ethics states that all researchers are responsible for the well-being of their participants and to take exceptional precautions so as to avoid harming them, them whether physically, emotionally, psychologically or socially. In conclusion, the Tuskegee syphilis study raised many significant ethical questions. This includes the ethical concerns about the premise of the experiment, its use of deception when enrolling the participants, its research design, and not using informed consent. Background issues were also raised such as the appropriateness of carrying out a research with vulnerable members in the community, lack of access to proper healthcare for the participants and carrying out a research that exploited individuals in terms race and others social injustice and prejudged cultural approach (Heintzelman, 1996). Therefore, according to Monette, Sullivan and DeJong (2002), the Tuskegee syphilis experiment violated all the three requirements, proposed by the judiciary. This included that an informed consent of the person participating in the research must be obtained prior to the start of the study. Furthermore, each experiment must be carried out first on animals in order to investigate any dangers that may occur, and all experiments must be performed under suitable medical protection and management (Caplan, 1992). For this reason, the government decided to reevaluate its research practices in order to prevent another incident like the Tuskegee syphilis experiment. In 1974, the National Research Act was signed that created the National Commission for the Protection of Human Subjects of Biomedical and behavioral Research (Heintzelman, 1996). This group helped to identify the basic principles of how to conduct a research and came up with several ways to ensure that those principles were firmly followed. References Angell, M. (1997). The Ethics of Clinical Research in the Third World. New England Journal of Medicine, 337 (12), 847-849. Caplan, A. L. (1992). Twenty years after: The legacy of the Tuskegee syphilis study—When evil intrudes. Hastings Center Report, 22, 29-32. Heintzelman, C. A. (1996). Human subjects and informed consent: The legacy of the Tuskegee syphilis study. Scholars, 6 (1). Jones, J. H. (1993). Bad Blood: The Tuskegee Syphilis Experiment. New York: The Free Press. Monette, D. R., Sullivan, T. J., & DeJong, C. R. (2002). Applied social research: Tool for the human services (5th ed.). New York: Harcourt. Read More