Before we delve into the Tuskegee Syphilis Study and any ethical concerns, first let us try to understand the meaning of Tuskegee.
According to Wikipedia, the name “Tuskegee” comes from Spanish “Tasquiqui”, which came from the Muskogee word “Taskeke”, a name of a Greek settlement at this site, meaning “warriors.” Tuskeegee is also a city in E Alabama.
The Tuskegee Study refers to an experiment on human beings around untreated syphilis.
The subjects were Black men, and it has been recognised as one of the longest nontherapeutic experiments on human beings in medical history.
This was also noted by Caplan (1992).
The United States Public Health Service (USPHS), started working with the Tuskegee Institute in 1932 on a study with the aim of recording the natural history of syphilis.
It was originally called the “Tuskegee Study of Untreated Syphilis in the Negro Male” but it is now referred to as the “USPHS Syphilis Study at Tuskegee”).
The study initially aimed to determine the natural course of untreated latent syphilis in some African American men in Tuskegee, Macon County, Alabama. The research involved 600 Black men – 399 with syphilis, 201 who did not have the disease.
Participants’ informed consent was not collected. Researchers recruited participants with misleading promises and told the men they were being treated for “bad blood,” a local term used to describe several ailments, including syphilis, anaemia, and fatigue.
In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance.
The subjects were recruited with misleading promises of “special free treatment,” which were actually spinal taps done without anaesthesia to study the neurological effects of syphilis, and they were enrolled without their informed consent.
The subjects received heavy metals therapy, standard treatment in 1932, but were not offered antibiotic therapy when it became clear in the 1940s that penicillin was a safe and effective treatment for the disease.
When penicillin became widely available by the early 1950s as the preferred treatment for syphilis, this therapy was again withheld.
On several occasions, the USPHS actually sought to prevent treatment.
Following a press release story in 1972 about the Tuskegee study, an Ad Hoc Advisory Panel was appointed to review the study.
The panel concluded that the study was “ethically unjustified”. This meant that the results were disproportionate compared to the known risks to the human subjects involved.
In October 1972, the panel advised stopping the study. A month later, the Assistant Secretary for Health and Scientific Affairs announced the end of the study.
In March 1973, the panel also advised the Secretary of the Department of Health, Education, and Welfare (HEW) (now known as the Department of Health and Human Services) to instruct the USPHS to provide all necessary medical care for the survivors of the study.
In order to ensure these services were provided as efficiently as possible, the Tuskegee Health Benefit Program (THBP) was established.
In 1975, participants’ wives, widows and children were added to the program.
In 1995, the program was expanded to include health, as well as medical, benefits. The last study participant died in January 2004. The last widow receiving THBP benefits died in January 2009.
Participants’ children (10 at present) continue to receive medical and health benefits.
Later in 1973, a class-action lawsuit was filed on behalf of the study participants and their families, resulting in a $10 million, out-of-court settlement in 1974.
What are the key learning from the Tuskegee syphilis study on ethical issues
Scientific Research often raises ethical issues, especially when people are involved in the research process.
Most often, the underlined experimental research inculcates people of vulnerability; Children, homeless people and persons living with disabilities.
It is paramount to hence adhere to the standards of conducting research.
The basic principles of research ethics include; honesty, integrity, objectivity, carefulness, openness, non-discrimination, legality, confidentiality, competence, human subjects’ protection, animal care.
When a scientific research is conducted in a way that contravenes ethical norms and standards or researchers go too far in their experiments, research is branded as unethical.
Unethical in science, pertains to the various acts of fabrication, falsification, plagiarism or any other practices that deviate from those that are accepted standards of research within the scientific community for proposing, conducting or reporting research.
Alternatively, it is referred to as misconduct in research writing. It disregards honest error or differences with interpretations or judgments of one’s findings.
Unethical practices may include; gift authorship, duplicate publication, salami publication, and conflict of interest. The frequency of these practices mainly stems from;
- Ignorance of ethics
- Pressure to publish
- Career prospects
- Lack of teamwork
- Poor human relationship and collaboration
In May 1997, President Bill Clinton issued a formal Presidential Apology relating to the Tuskegee study here.
What ethical principles were violated in the Tuskegee Syphilis study?
The Tuskegee study violated –
- Basic bioethical principles of respect for autonomy, non-maleficence, and justice.
- Autonomy; Participants of the experiment were never fully informed of the procedure of the research in order to make autonomous decisions.
- Code of Non-maleficence was again breached as participants were harmed; treatment/panacea was withheld after it became the treatment of choice and
- Justice as only African Americans were recruited as subjects of this experimental procedure.
List 5 ethical problems that occurred in the Tuskegee Syphilis study
The Tuskegee syphilis study raises a host of moral problematic issues emanating from its violation of the ethical principles guiding research involving human subjects. The issues include
- Informed consent
- Truth telling
- Paternalism and the
- Use of deception in research.
Does the Tuskegee study differ from today’s research studies for HIV and AID?
Yes, the Tuskegee study differs from Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome (HIV and AIDS) research studies.
Research studies are dissimilar from the Tuskegee experiment in modern scientific research.
Whiles the Tuskegee Syphilis study had no protocol or any supervision by an independent review board, no AIDS study or any other medical study carried on human subjects in the United States can be conducted today under those conditions.
At the present, medical research on human subjects should be approved and monitored by an institutional review board that includes members not affiliated with the institution.
Besides the above, in the Tuskegee study, no information about the experiment procedure, possible effects and adverse effects were given to the subjects about the true nature of the study and thus informed consent was not obtained.
Evidently, such activities would be in clear violation of the National Research Act and the accompanying legislation on the protection of human subjects.
Furthermore, the subjects of the Tuskegee study were prevented from getting known and effective treatment for syphilis at that time.
While no such treatment has been found yet for AIDS, the HIIV/AIDS prevention programs aim to disseminate true and accurate information about the nature of this syndrome; their efforts are contrary to what the researches in the Tuskegee study did.
What influence has Tuskegee study had on the conduct of clinical trials?
The Tuskegee study generated the essence of the need for the research community to be pay attention and interrogate the issue of distrust among African American if the said population or representation is to ever part take in a similar program.
Scientists must establish trusting relationships with any given population of studies which must be built on service and mutual respect prior to the onset of a research program.
Individual researchers should state their commitment to ethical research conduct and describe provisions that they have made to protect participants in their particular studies.
The Tuskegee study is symbolic of the larger problem of African-American distrust of the largely white medical establishment which has evolved in the presence of racial discrimination, racial inequities in quality of care received and a previous history of medical research misuse.
The need for an increase in trust with the African American community is quintessential in the conduct of clinical trials.
Furthermore, the need to provide frank explanations for the experimental program cannot be under emphasised.
Studies and initiatives that specifically target racial or ethnic minorities or that are likely to result in the disproportionate representation of racial minorities among study participants.
What was the purpose of the Tuskegee study?
Tuskegee Institute wanted to examine the effects of untreated syphilis.
At the time, only a dangerous treatment involving the infusion of toxic metals was available to treat syphilis.
What is Tuskegee famous for?
The city is best known as the seat of Tuskegee University (1881), originally a school for training African American teachers and now a private, coeducational institution of higher learning.
This city was the principal station for the scientific experiment whose main purpose of study was to determine whether penicillin could prevent and not just cure syphilis infection.
Majority of the unfortunate subjects of this program who got infected never received medical intervention.
To date, this city in Alabama is marked with the atrocities of the science community on the black population within that area.
What was the main ethical violation in the Tuskegee study of untreated syphilis?
Among the numerous codes of ethics that were breached during the Tuskegee study in 1932, the predominate ethical violation was the voluntary informed consent.
The rationale of voluntary informed consent is an essential ethical requirement in biomedical research involving human experiment. It obligates the medical expert to ensure that selected research subjects are provided with detailing information about the medical procedures involved.
Through this, the details of the procedure need to be relayed to the participants in non-technical terms to enable them to grasp the concept, thus granting either their informed consent or informed refusal to undertake such a medical procedure.
In studies which require humans, it is very immoral to seek consent of the participants through acts of deception.
Additionally, when consent is acquired through works of manipulation as apparent in the Tuskegee study, it could portray research as a kind of human experimentation engaged in by scientists to satisfy nonaltruistic desires, and this may prompt people from undertaking the program.
This could equally result in litigation of the physicians or medical researchers.
Where can I find Tuskegee experiment podcast?
Tuskegee Syphilis Study podcast can be found at – Treatment by Autopsy on Apple Podcast
Gaynes, R. (2017). The Discovery of Penicillin—New Insights After More Than 75 Years of Clinical Use. Emerging Infectious Diseases, 23(5), 849-853. https://doi.org/10.3201/eid2305.161556.
“HEW News” Office of the Secretary, March 5, 1973; Memorandum “USPHS Study of Untreated Syphilis (the Tuskegee Study; Authority to Treat Participants Upon Termination of the Study,” from Wilmot R Hastings to the secretary, March 5, 1973.
Vonderlehr, R.A., Clark, T., Wenger, O.C., Heller, J.R., Untreated Syphilis in the Male Negro, Journal of Venereal Disease Information. 17:260-265, (1936).
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. (1995, March). Ethical issues in social work research: The Tuskegee syphilis study, 41st Annual Program Meeting, Council on Social Work Education, San Diego, California.
Heintzelman, C. A. (1996). Human subjects and informed consent: The legacy of the Tuskegee syphilis study. Scholars, 6 (1), 23-30.
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