Key Points
- Medical research has advanced on the basis of studies that were performed without following the basic standards of ethical treatment of human beings;
- Informed consent is the key ethical issue that is raised in all three examples of medical research and experimentation;
- Racial prejudices and biases of the twentieth century also influenced the shaping of research in multiple areas, including genetics and immunology;
- Both Tuskegee and Nazi Germany experiments were cruel and maleficent in nature because the subjects were treated inhumanely;
- Research ethics warrants continuous reevaluation of principles and standards to ensure that study subjects are treated appropriately.
The current paper is focused on exploring the ethics of medical research with the help of examples from The Tuskegee Experiment, the Medical Experiments of Nazi Germany, and the case of Henrietta Lacks.
The Tuskegee Experiment
- Carried out between 1932 and 1972 on 600 Black men from Macon County, Alabama;
- Conducted under the auspices of the US Public Health Services and managed from Washington (Ogungbure, 2011);
- 400 participants were infected by syphilis while 200 were a control group;
- Aimed to discover whether the Black population reacts to the disease differently as well as how long a person can live untreated;
- Most men used in the study were uneducated and were vulnerable in terms of being subjected to various experiments.
The Tuskegee Experiment was a syphilis study, the researchers in which used African-American subjects on which the hypotheses were tested. The standards of ethical research and health care were not upheld during the clinical and observational trials.
Tuskegee Experiment: Ethical Violations
- The following range of ethical issues was apparent from the study: informed consent, racism, biased selection of subjects, maleficence, and truth-telling (Ogungbure, 2011);
- Human beings were put in dangerous situations in regards to their health and were treated as guinea pigs;
- Researchers did not obtain voluntary informed consent from participants (Paul & Brookes, 2015);
- The participants did not know about their diagnosis, which is a truth-telling violation;
- Racism was evident through the biased selection of study subjects, all of whom were Black;
- Maleficence was reflected in dangerous procedures, such as spinal tap, which led to extreme health consequences.
The following range of ethical issues was apparent from the study: informed consent, racism, biased selection of subjects, maleficence, and truth-telling (Ogungbure, 2011). The severe health issues that resulted from the study were not properly addressed, which led to the deaths of many research subjects.
Nazi Medical Experiments
- During World War II, German physicians gave their support to the ideas of racial hygiene;
- All Nazi experiments violated informed consent, were racist, maleficent, and did not follow the principle of truth-telling;
- From 1933 onward, they accepted Germany’s emphasis on heredity and gained access to resources for research funding;
- Based on the racial health policies developed for ‘cleansing’ German society, medical researchers engaged in efforts of mass sterilization and near annihilation of the European Jew population.
The medical experiments of Nazi Germany went against the principles of human rights and violated ethical research standards. Experiments were focused on three distinct issues: the survival of the army, the testing of treatments and drugs, and the promotion and advancement of ideological and racial goals of the Third Reich.
Nazi Medical Experiments: Ethical Violations
- Experiments to ensure the survival of the army:
- A Dachau physician conducted experiments on prisoners on high altitude for determining the maximum altitude from which people can safely parachute;
- Prisoners were used to hypothermia experiments and tests of making seawater drinkable.
- Experiments to test treatments and drugs:
- Inmates from Dachau, Sachsenhausen, Natzweiler, Buchenwald, and Neuengamme concentration camps were used to test immunization against contagious diseases;
- Ravensbruck physicians conducted tests in bone-grafting while prisoners at Natzweiler and Sachsenhausen were forced to get exposed to phosgene and mustard gas for testing antidotes to them.
- Experiments to advance the ideological and racial goals of the Third Reich:
- Joseph Mengele’s genetic experiment on twins and Roma (Gypsies);
- Sterilization experiments and tests to determine how different races withstand contagious illnesses (Walker, 2015);
- August Hirt’s experiments at Strasbourg University aimed to establish the racial inferiority of the Jewish population;
- The Nuremberg Code’s creation was the direct outcome of the experiments’ discovery;
- Informed consent was set to be one of the key principles of ethical research trials.
Most experiments conducted in Nazi Germany used prisoners as subjects because they did not have the freedom to avoid participating. The authority of German researchers was supported politically, which meant that their unethical and inhumane actions could not be punished.
Due to the high impact of ideology on the shaping of the German national thought, researchers were also encouraged to conduct experiments to decrease the significance of unwanted populations. The inhumane treatment of participants in such studies warranted the creation of the Nuremberg Code after WWI to require the collection of informed consent.
Henrietta Lacks and HeLa Cells
- The case of Henrietta Lacks challenges the research community to this day due to considerations of ethics, race, and genetics;
- Lacks was given the diagnosis of cervical cancer in 1951 at Johns Hopkins Hospital;
- It was later revealed that her tissue samples were taken and passed along for research without her knowledge. The same procedure was carried out with other patients;
- Henrietta’s cells were different and could survive and divide in culture, which led to the discovery of HeLa cells that were named in her honor;
- The discovery of HeLa cells was profitable to researchers who gave cells to others for further exploration;
- Henrietta’s family received no financial support and continued living in poverty with limited access to health care (Beskow, 2016).
The case of Henrietta Lacks challenges the research community to this day due to considerations of ethics, race, and genetics. While it did not have the same level of disrespect toward the subject, it raised concerns over informed consent and the use of biological materials without the knowledge of individuals from whom they were taken.
Henrietta Lacks and HeLa Cells: Ethical Violations
- Informed consent is the key ethical issue associated with Henrietta Lack’s case;
- Since Henrietta was an African American, concerns regarding the welfare of the vulnerable populations as well as compensation are also relevant (Lucey, Nelso-Rees, & Hutchins, 2009);
- Genetic testing has undergone significant changes in terms of ethics following Henrietta’s case (Fernandez Lynch & Joffe, 2017);
- Regardless, Henrietta deserved to have knowledge of tissue samples being taken to have an opportunity to make an informed decision regarding further actions.
Henrietta’s case is relevant to biomedical research because, despite the breakthrough, the intellectual integrity of the study subject was significantly undermined. While the researchers who discovered the cells and continued their study were elevated to a great degree, the contribution of Henrietta, although not consensual, was noted only on words.
References
Beskow L. (2016). Lessons from HeLa cells: The ethics and policy of biospecimens. Annual Review of Genomics and Human Genetics, 17, 395-417.
Fernandez Lynch, H., & Joffe, S. (2017). A lesson from the Henrietta Lacks story: Science needs your cells. The New York Times. Web.
Lucey, B., Nelson-Rees, W., & Hutchins, G. (2009). Henrietta Lacks, HeLa cells, and cell culture contamination. Archives of Pathology & Laboratory Medicine, 133(9), 1463-1467.
Ogungbure, A. (2011). The Tuskegee syphilis study: Some ethical reflections. Thought and Practice: A Journal of the Philosophical Association of Kenya, 3(2), 75-92.
Paul, C., & Brookes, B. (2015). The Rationalization of unethical research: Revisionist accounts of the Tuskegee syphilis study and the New Zealand “unfortunate experiment.” American Journal of Public Health, 105(10), 12-19.
Walker, A. (2015). The twins of Auschwitz. BBC News. Web.