Medical Testing on Prison Inmates

1. Introduction
1. The need for medical testing
2. The methods
3. How it began
4. Questions for the future: Why? Who else could we use? New methods?
2. Pros
1. “Throw away” people
2. Alternative to animal testing (better to test on people it will be used for)
3. Written consent, method explained to them
4. Volunteers
5. Controlled environment, better for research
6.  
3. Cons
1. No way to monitor effective use of informed consent
2. Researchers abuse “test subjects” (more harmful than first thought)
3. Controlled environment can increase effects in some cases (HIV spreading)
4. Inmates are rarely paid, receive benefits, or are “let out” after volunteering
5. When they are released they can spread it to the general public.
6.  
4. Case Study #1: Tuskegee, Alabama (1930)
1. 600 black inmates (un informed, un educated, did not volunteer)
2. Infected with syphilis (STD)
3. Left untreatedà Researchers wanted to study its effect on the body
4. “Torture”
5. Symptoms: organ damage, degeneration of CNS, insanity, and blindness.
6. Treatment was available in 1940’s yet the study continued through the 60’s. (Simple antibiotic called penicillin)
7.  
5. Case Study #2: Holmesburg, Pennsylvania (1931-1974)
1. Mostly uneducated black males
2. Took volunteers, but did not give them informed consent
3. Subjects were exposed to: radiation, carcinogenic pesticides (dioxin), psychotropic drugs, and an assortment of infectious diseases.
4. Inmates were paid (a few $’s per day)
5. This case went to court. Defendants: Dow Chemical Company and Johnson & Johnson
6. Fmr. Prisoner Edward Anthony “my hands swollen as big as boxing gloves” when tested with bubble bath ingredients.
7.  

6. Conclusion
1. Do risks to general public outweigh the good?
2. Are there new methods of testing that would leave humans out of the picture?
3. Are there real benefits to prisoner testing?
4. My thoughts…

Bibliography

Carr, Sarah. Chronicle of Higher Education. Washington, D.C. Volume 46, Issue 3 p. A46. 10 Sep 1999.

Egendorf, Laura K. Ed. Human Rights: Opposing View Points. Greenhaven Press, MI. 2003.

Famignetti, Robert. Ed. The World Almanac 2000.  New Jersey: PRIMEDIA   Reference, Inc,1999.

Fayerick, Deborah. Ex-Inmates Seek Treatment for Prison Experiments.  Internet. Available 8 Nov 1998. http://www.cnn.com/us/9811/08/acresofskin

Finn, Jeffery and Eliot L. Marshall. Medical Ethics. New York: Chelsea House            Publishers, 1990.

Hyde, Margaret O. and Elizabeth H. Forsyth, M.D. Medical Dilemmas. New York:      G.P. Putnam’s Sons, 1990.

Jordan, Michael. Hush Hush: The Dark Secrets of Scientific Research. New   York: Firefly Books Ltd, 2003.

Landman, W.A. “Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study.”           Journal of Medical Ethics. 28.U (2002) 208

McCullough, Marie. Former Prison Inmates in PA Protest Skin Doctors Award. Philadelphia Inquirer. 20 Oct 2003.

McLellan, Dennis “Ernest Hendon, 96; Tuskegee Syphilis Study’s Last Survivor” Los Angeles Times. 25 Jan 2004. lat ed: A1+

Paddock, Richard C. and Janny Scott. LA Times. AIDS and Inmates. 1989.

Rutecki, Gregory W and Michael Youtsey and Bernard Adelson. “A Critical Revisit to the Protection of Human Subjects” Ethics and Medicine; Highland Park. 18.3 (2002): 135-146

Silbergeld, Ellen. “A Necessary Paradox; Research Has Some Risks. But It Is Good for Us.” Washington Post. 2 Sept 2001, late ed: B05

Talvi, Silija J.A. “The Prison As Laboratory” In These Times 7 Dec 2001.

   In 1999 there were 272,640,000 people living in the United States (Famignetti Almanac). Every year more than 2,000,000 of them die due to various factors from health reasons, accidents, or even old age. This raises a very important question to researchers. How can we make our world safer for humans? Some how we need to continually increase our medical technology to cure diseases and cancers. How do we do this? It involves research, studies, and samples on test subjects, which brings us to another controversial issue. Who do we test on?

Many researchers and scientists have different opinions as to the humanity of testing on humans and animals and which is more efficient. However, if we use humans as test subjects how do we go about conducting research? Researchers and politicians alike have suggested using inmates as test subjects to serve as part of their sentence or to offer payment or special services. But is this really the right thing to do? What are the benefits and risks of using the prison as a laboratory?

In the 1970’s the pharmaceutical industry was doing more than 90 percent of its testing on prisoners (Talvi Internet). The prison setting appealed to researchers because it was a large group that were always accessible and in a highly controlled environment. Benefits were offered to inmates that participated in the studies such as money, favorable treatment, or early release.

Researchers also liked the thought that they were helping prisoners do something good for the rest of society. They say that they only used volunteer subjects so if the inmates didn’t want to be a part of a study they didn’t have to be. Economists like the fact that human products are being tested on humans because they will be easier to market to the public. Animal activists like it because it poses an alternative to animal testing, and when used on inmates it can be thought of as a source of punishment.

However, prisons tend to be crammed and overbooked with inmates, which can spread diseases, and pathogens that are being tested and ruin data results. Another issue with testing on inmates is that informed consent seems to be failing. There have been numerous law suits in the past decade where former inmates claim there was no information about what they were participating in and that they were forced in some cases to be a part of the experiment. Currently, there is no way to monitor prison experiments or the use of informed consent.

Former prisoners have also stated that the benefits they were told about never came true, and that the experiments were much harsher than first thought. Some inmates were infected with diseases so that researchers could see the effects on the body. When they were released untreated and uneducated about what had happened to them they actually spread the disease to the general public.

The most common study known to the public about medical testing on prisoners is the case in Tuskegee, Alabama. In the 1930’s researchers infected 600 black male inmates with syphilis. Syphilis is a common sexually transmitted disease (STD) that creates sores on the skin around the external genitals (CDC Internet). If left untreated syphilis can cause skin rashes, fever, swollen glands, patchy hair loss, weight loss, headaches, fatigue, paralysis, gradual blindness, organ damage, degeneration of the central nervous system, insanity and even death (CDC Internet).

The researchers were studying the long-term effects the disease had on the body so the inmates were left untreated to deal with the symptoms and side effects naturally. Treatment for syphilis is a simple injection of Penicillin, which was developed in the 1940’s. The Tuskegee study continued through the 60’s before being shut down and exposed to the public. By then, some of the test subjects had been released still uninformed about what had happened to them and untreated. This caused them to infect their own loved ones and spread the disease even more than being a controlled STD (Reverby Tuskegee’s Truths).

By 1972, 28 participants had died of syphilis, 100 died of related complications, 40 wives had contracted the disease and 19 children contracted the disease at birth (McLellan Survivor).The prisoners were never told what disease they had or that treatment was even available.

In 1996 President Clinton issued a formal federal apology saying, “We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry” (Reverby Tuskegee’s Truth’s). Along with the apology Clinton donated a $200,000 government grant to establish the Center for Bioethics in Research and Healthcare at the Tuskegee University in memorial to the prisoners (McLellan Survivor).

On January 16^th, 2004 the last Tuskegee Syphilis Study’s survivor died. Ernest Hendon was one of the lucky Tuskegee prisoners. He was a part of the control group that was never exposed to syphilis. He died of natural causes at his home, but before he passed away Hendon talked to reporters about his experience. He said that they were never told what they had been infected with. They were only told that they had “bad blood” (McLellan Survivor).

A very similar study took place during the same decades from 1931-1974 at Holmesburg Prison in Pennsylvania. At Holmesburg researchers conducted multiple tests on a variety of things such as exposure to radiation, carcinogenic pesticides, psychotropic drugs, cosmetics and an assortment of infectious diseases. Albert Kligman ran the tests with research scientists from the University of Pennsylvania on mostly uneducated black males (Talvi Internet).

The research was conducted on volunteer inmates that agreed to participate but according to them was never given informed consent (Talvi Internet). The inmates were paid a few dollars per day for their work but were never given treatment or compensation for treatment if anything severe happened to them. They were released uninformed and untreated just like the Tuskegee patients.

After the research was conducted scientists had created powerful skin creams containing Retin-A, which is now known to reduce wrinkles, and had discovered how to make a relatively safe pesticide. In a CNN interview with former prisoner Edward Anthony he said, “My hands were swollen as big as boxing gloves” when he was tested with bubble bath ingredients. The experiment left permanent swelling in his fingertips and degenerated fingernails (Feyerick Internet).

In October of 2000, nearly 300 former inmates filed suit against the University of Pennsylvania, Albert M. Kligman, and corporations like Dow Chemical and Johnson & Johnson (Talvi Internet). The inmates are suing for injuries, lingering illness, treatment and psychological trauma suffered as a result of the experiments. The lawsuit could result in payment to the inmates totaling over $2.4 million!

The case is still pending in court but is receiving much attention from publicity of former prisoner, Allen Hornblum’s, book Acres of Skin. Nobody knew about the Holmesburg Prison case until the publication of Hornblum’s book. Most of the prisoners used in the Holmesburg experiments are either dead or in poor health. Those that are still alive are in their fifties and sixties, have skin rashes and suffer from breathing problems, gynecological complications and infections.

Even after the horrifying cases that took place during the Nazi reign and the establishment of the Nuremberg Code, the Tuskegee and Holmesburg cases still happened! Why wasn’t the Nuremberg Code followed? The Nuremberg Code reads as follows:

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

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) Only scientifically qualified persons should conduct the experiment. 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 seems 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 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 (Rutecki and Youtsey and Adelson).

            In the case of ethics in medicine the syphilis study of Tuskegee, Alabama seems to be the most astounding. If a simple injection of penicillin developed a few years after the study started would cure syphilis from anyone why didn’t the researchers cure them before being released? If researchers go to all the trouble to create a controlled experiment why wouldn’t they continue to be smart before releasing the infected men? Its one thing not to give them informed consent and let them know what they are being infected with, but it’s another to put the general public at risk. What happened to this experiment being created for the common good? Why would you release 600 infected men?

            It’s obvious that it is a difficult task to organize a research experiment and chose your research subjects. Ellen Silberg said it well, “how can we ask individuals to undertake risks with out assurance of direct benefits? We make this request within the context of informed consent…” (B 05). Once you design an experiment and chose your subjects you need to inform them of the complete process. It’s the law! They have the right to know what they’re being used for.

            Testing on inmates demonstrates some obvious advantages for researchers. It is a public place with lots of volunteers available. It is also a highly controlled test area which can offer great results. But on the other hand what are the ethics of testing on inmates or humans for that matter? I believe that if they volunteer for the job then it is ok as long as they are given informed consent. If this is the case then there is no difference between them and any other person that volunteers for a medical study.

            However, if they are forced or volunteer and then never receive any details about the experiment then it is morally unethical to conduct the research. How can anyone do that to someone with out their acknowledgment? The Tuskegee and Holmesburg experiments produced results for both sets of researchers but at what cost? They infected lots of their loved ones upon release. Is that really what we want to do? I think we should stick to animal testing or human volunteers but either way the test subject needs to receive treatment if possible and benefits. That is the only way to conduct ethical medical research.