Here is how the CDC describes what it did. http://www.cdc.gov/tuskegee/timeline.htm
"The Study Begins"
"In 1932, the Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis in hopes of justifying treatment programs for blacks.The study initially involved 600 black men – 399 with syphilis, 201 who did not have the disease. The study was conducted without the benefit of patients' informed consent.
[The CDC implies that informed consent is a "benefit" - an extra, something given by the CDC as a favor - but by the time the CDC took over in 1957, the horrific experiments on Auschwitz prisoners had occurred and the Nuremberg Trial had exposed the horrors of the Nazi of forced medial experiments. The Nuremberg Code had enshrined "informed consent" to protect people from such horrors ever being committed again under the name of medical research. Informed Consent was legally required for any research studies of human beings.]
"Researchers told the men they were being treated for "bad blood," a local term used to describe several ailments, including syphilis, anemia, and fatigue.
[The reference here to "bad blood" and syphilis, suggest the men may have actually been told what was wrong with them, seems only to come from the CDC. The men had no idea they had syphilis or what the "study" they were lured into, was meant to do.]
"In truth, they did not receive the proper treatment needed to cure their illness.
[That is not the "truth." The CDC is lying. The men did not receive any treatment whatsoever for syphilis, and that was by the intentional and careful arrangement of those conducting the experiment, including the CDC, with doctors in the area contacted and told they should not treat the men. The researchers were only interested in watching the course only of "untreated" syphilis, not of treating it or relieving suffering or preventing its spread or stopping deaths.]
"In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance."
[The CDC lists these items as though something good was given to the men by those conducting the study, when in fact food was an inducement used to lure these very poor people into the experiment, and any inducements are violations of informed consent because people must be allowed to decide without pressure of any sort. Medical exams directly benefited the researchers. And so did the burial because the condition for receiving payment for them was allowing autopsies to be performed before burial.
The first item in the Nuremberg Code:
1. The voluntary consent of the human subject is absolutely essential.
This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.]
"Although originally projected to last 6 months, the study actually went on for 40 years. "
[It was only stopped by a whistleblower, not by the CDC.]
What Went Wrong?
"In July 1972, an Associated Press story about the Tuskegee Study caused a public outcry that led the Assistant Secretary for Health and Scientific Affairs to appoint an Ad Hoc Advisory Panel to review the study.
[What went wrong? The CDC article appears to say that what went wrong was the AP story caused an outcry and that stopped the CDC's "study." Is that not what is being said, followed only afterwards by what was wrong with the study?]
"The panel had nine members from the fields of medicine, law, religion, labor, education, health administration, and public affairs.
The panel found that the men had agreed freely to be examined and treated. "However, there was no evidence that researchers had informed them of the study or its real purpose. In fact, the men had been misled and had not been given all the facts required to provide informed consent.
[One cannot agree freely if one is thoroughly lied to. The CDC admits the men were "misled." The CDC says they were not given "all the facts required to provide informed consent" That is in itself a lie. The men were not given any of the facts. There can be no consent with being informed. And they were lured into the study with food like lab animals are lured by food to go where or do what researchers want.]
"The men were never given adequate treatment for their disease. Even when penicillin became the drug of choice for syphilis in 1947, researchers did not offer it to the subjects.
[The men were purposefully not given any treatment whatsoever for their disease, or even told what disease they had, and were blocked in advance from getting help from any doctors in their area. The men were effectively imprisoned in the experiment that was designed to watch them suffer, deteriorate (dementia, blindness, paralysis, ....) and die.]
"The advisory panel found nothing to show that subjects were ever given the choice of quitting the study, even when this new, highly effective treatment became widely used."
The Study Ends and Reparation Begins
"The advisory panel concluded that the Tuskegee Study was "ethically unjustified"--the knowledge gained was sparse when compared with the risks the study posed for its subjects.
"In 1974, a $10 million out-of-court settlement was reached.
As part of the settlement, the U.S. government promised to give lifetime medical benefits and burial services to all living participants. The Tuskegee Health Benefit Program (THBP) was established to provide these services. In 1975, wives, widows and offspring were added to the program. In 1995, the program was expanded to include health as well as medical benefits. The Centers for Disease Control and Prevention was given responsibility for the program, where it remains today in the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.
"The last study participant died in January 2004. The last widow receiving THBP benefits died in January 2009. There are 15 offspring currently receiving medical and health benefits."
Timeline
Timeline
1895 Booker T. Washington at the Atlanta Cotton Exposition, outlines his dream for black economic development and gains support of northern philanthropists, including Julius Rosenwald (President of Sears, Roebuck and Company).
1900 Tuskegee educational experiment gains widespread support. Rosenwald Fund provides monies to develop schools, factories, businesses, and agriculture.
1915 Booker T. Washington dies; Robert Motin continues work.
1926 Health is seen as inhibiting development and major health initiative is started. Syphilis is seen as major health problem. Prevalence of 35 percent observed in reproductive age population.
1929 Aggressive treatment approach initiated with mercury and bismuth. Cure rate is less than 30 percent; treatment requires months and side effects are toxic, sometimes fatal.
1929 "Wall Street Crash"--economic depression begins.
1931 Rosenwald Fund cuts support to development projects. Clark and Vondelehr decide to follow men left untreated due to lack of funds in order to show need for treatment program.
1932 Follow-up effort organized into study of 399 men with syphilis and 201 without. The men would be given periodic physical assessments and told they were being treated. Motin agrees to support study if "Tuskegee Institute gets its full share of the credit" and black professionals are involved (Dr. Dibble and Nurse Rivers are assigned to study).
1934 First papers suggest health effects of untreated syphilis.
1936 Major paper published. Study criticized because it is not known if men are being treated. Local physicians asked to assist with study and not to treat men. Decision was made to follow the men until death.
1940 Efforts made to hinder men from getting treatment ordered under the military draft effort.
1945 Penicillin accepted as treatment of choice for syphilis.
1947 USPHS establishes "Rapid Treatment Centers" to treat syphilis; men in study are not treated, but syphilis declines.
1962 Beginning in 1947, 127 black medical students are rotated through unit doing the study.
1968 Concern raised about ethics of study by Peter Buxtun and others.
1969 CDC reaffirms need for study and gains local medical societies' support (AMA and NMA chapters officially support continuation of study).
[In response to concern about the ethics of the Experiment, the CDC actually "reaffirms need for study" and seeks the support of local medical societies, trapping the men into it even more thoroughly, cutting them off from any medical help.]
1972 First news articles condemn studies.
1972 Study ends.
1973 Congress holds hearings and a class-action lawsuit is filed on behalf of the study participants.
1974 A $10 million out-of-court settlement is reached and the U.S. government promised to give lifetime medical benefits and burial services to all living participants. The Tuskegee Health Benefit Program (THBP) was established to provide these services.
1975 Wives, widows and offspring were added to the program.
1995 The program was expanded to include health as well as medical benefits.
1997 On May 16th President Clinton apologizes on behalf of the Nation.
1999 Tuskegee University National Center for Bioethics in Research and Health Care hosts 1st Annual Commemoration of the Presidential Apology.
2001 President's Council on Bioethics
was established.
2004 CDC funds 10 million dollar cooperative agreement to continue work at Tuskegee University National Center for Bioethics in Research and Health Care.
[CDC makes money, and gains more power at Tuskegee University.]
2004 The last U.S. Public Health Service Syphilis Study at Tuskegee participant dies on January 16.
2006 TuskegeeUniversity holds formal opening of Bioethics Center.
2007 CDC hosts Commemorating and Transforming the Legacy of the United States Public Health Service (USPHS) Syphilis Study at Tuskegee.
[CDC does not mention its major role in the murders.]
2009 The last widow receiving THBP benefits dies on January 27.
The Nuremberg Code
1. The voluntary consent of the human subject is absolutely essential.
This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.
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 a 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. The experiment should be conducted only by scientifically qualified persons. 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 the 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.
The Nuremberg Code is the most important document in the history of the ethics of medical research.1-6 The Code was formulated 50 years ago, in August 1947, in Nuremberg, Germany, by American judges sitting in judgment of Nazi doctors accused of conducting murderous and torturous human experiments in the concentration camps (the so-called Doctors' Trial).7 It served as a blueprint for today's principles that ensure the rights of subjects in medical research.
Comments