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Wednesday, June 6, 2018

Nazi human experimentation

From Wikipedia, the free encyclopedia

Nazi human experimentation was a series of medical experiments on large numbers of prisoners, including children, by Nazi Germany in its concentration camps in the early to mid 1940s, during World War II and the Holocaust. Chief target populations included Romani, Sinti, ethnic Poles, Soviet POWs, disabled Germans, and Jews from across Europe.

Nazi physicians and their assistants forced prisoners into participating; they did not willingly volunteer and no consent was given for the procedures. Typically, the experiments resulted in death, trauma, disfigurement or permanent disability, and as such are considered examples of medical torture.

At Auschwitz and other camps, under the direction of Eduard Wirths, selected inmates were subjected to various hazardous experiments that were designed to help German military personnel in combat situations, develop new weapons, aid in the recovery of military personnel who had been injured, and to advance the Nazi racial ideology.[1] Aribert Heim conducted similar medical experiments at Mauthausen.

After the war, these crimes were tried at what became known as the Doctors' Trial, and revulsion at the abuses perpetrated led to the development of the Nuremberg Code of medical ethics. The Nazi physicians in the Doctors' trial argued that military necessity justified their torturous experiments, and compared their victims to collateral damage from Allied bombings. But this defense, which was in any case rejected by the Tribunal, cannot apply to the twin experiments of Josef Mengele, which were performed on children and had no connection to military necessity.

Experiments

The table of contents of a document from the Nuremberg military tribunals prosecution includes titles of the sections that document medical experiments revolving around: food, seawater, epidemic jaundice, sulfanilamide, blood coagulation and phlegmone.[2] According to the indictments at the Subsequent Nuremberg Trials,[3][4] these experiments included the following:

Experiments on twins

Experiments on twin children in concentration camps were created to show the similarities and differences in the genetics of twins, as well as to see if the human body can be unnaturally manipulated. The central leader of the experiments was Josef Mengele, who from 1943 to 1944 performed experiments on nearly 1,500 sets of imprisoned twins at Auschwitz. About 200 people survived these studies.[5] The twins were arranged by age and sex and kept in barracks between experiments, which ranged from injection of different dyes into the eyes of twins to see whether it would change their color to sewing twins together in attempts to create conjoined twins.[6][7] Often times, one twin would be forced to undergo experimentation, while the other was kept as a control. If the experimentation reached the point of death, Nazi's would bring in the second twin to kill them at the same time. Doctors would then look at the effects of experimentation and compare both bodies.[8]

Bone, muscle, and nerve transplantation experiments

From about September 1942 to about December 1943 experiments were conducted at the Ravensbrück concentration camp, for the benefit of the German Armed Forces, to study bone, muscle, and nerve regeneration, and bone transplantation from one person to another.[9] Sections of bones, muscles, and nerves were removed from the subjects without use of anesthesia. As a result of these operations, many victims suffered intense agony, mutilation, and permanent disability.[9]

On August 12, 1946 a survivor named Jadwiga Kamińska[10] gave a deposition about her time at Ravensbrück concentration camp and describes how she was operated on twice. Both operations involved one of her legs and although she never describes having any knowledge as to what exactly the procedure was, she explains that both times she was in extreme pain and developed a fever post surgery. Yet she was given little to no care. Kamińska describes being told that she had been operated on simply because she was a "young girl and a Polish patriot". She describes how her leg oozed pus for months after the operations.[11]

Prisoners were also experimented on by having their bone marrow injected with bacteria to study the effectiveness of new drugs being developed for use in the battle fields. Many prisoners left the camps with disfigurement that would last the rest of their lives. [12]

Head injury experiments

In mid-1942 in Baranowicze, occupied Poland, experiments were conducted in a small building behind the private home occupied by a known Nazi SD Security Service officer, in which "a young boy of eleven or twelve [was] strapped to a chair so he could not move. Above him was a mechanized hammer that every few seconds came down upon his head." The boy was driven insane from the torture.[13]

Freezing experiments

A cold water immersion experiment at Dachau concentration camp presided over by Professor Ernst Holzlöhner (left) and Dr. Sigmund Rascher (right). The subject is wearing an experimental Luftwaffe garment

In 1941, the Luftwaffe conducted experiments with the intent of discovering means to prevent and treat hypothermia. There were 360 to 400 experiments and 280 to 300 victims indicating some victims suffered more than one experiment.[14]

"Exitus" (death) table compiled by Dr Sigmund Rascher[15]
Attempt no. Water temperature Body temperature when removed from the water Body temperature at death Time in water Time of death
5 5.2 °C (41.4 °F) 27.7 °C (81.9 °F) 27.7 °C (81.9 °F) 66' 66'
13 6 °C (43 °F) 29.2 °C (84.6 °F) 29.2 °C (84.6 °F) 80' 87'
14 4 °C (39 °F) 27.8 °C (82.0 °F) 27.5 °C (81.5 °F) 95'
16 4 °C (39 °F) 28.7 °C (83.7 °F) 26 °C (79 °F) 60' 74'
23 4.5 °C (40.1 °F) 27.8 °C (82.0 °F) 25.7 °C (78.3 °F) 57' 65'
25 4.6 °C (40.3 °F) 27.8 °C (82.0 °F) 26.6 °C (79.9 °F) 51' 65'

4.2 °C (39.6 °F) 26.7 °C (80.1 °F) 25.9 °C (78.6 °F) 53' 53'

Another study placed prisoners naked in the open air for several hours with temperatures as low as −6 °C (21 °F). Besides studying the physical effects of cold exposure, the experimenters also assessed different methods of rewarming survivors.[16] "One assistant later testified that some victims were thrown into boiling water for rewarming."[14]

Beginning in August of 1942, at the camp Dachau, prisoners were forced to sit in tanks of freezing water for up to 3 hours. After subjects were frozen, they then underwent different methods for rewarming. Many subjects died in this process. [17]

The freezing/hypothermia experiments were conducted for the Nazi high command to simulate the conditions the armies suffered on the Eastern Front, as the German forces were ill-prepared for the cold weather they encountered. Many experiments were conducted on captured Russian troops; the Nazis wondered whether their genetics gave them superior resistance to cold. The principal locales were Dachau and Auschwitz. Dr Sigmund Rascher, an SS doctor based at Dachau, reported directly to Reichsführer-SS Heinrich Himmler and publicised the results of his freezing experiments at the 1942 medical conference entitled "Medical Problems Arising from Sea and Winter".[18] In a letter from September 10, 1942, Dr. Sigmund Rascher describes an experiment on intense cooling performed in Dachau where people were dressed in fighter Pilot uniforms and submerged in freezing water. Doctor Rascher had some of the victims completely underwater and others only submerged up to the head.[19] Approximately 100 people are reported to have died as a result of these experiments.[20]

Malaria experiments

From about February 1942 to about April 1945, experiments were conducted at the Dachau concentration camp in order to investigate immunization for treatment of malaria. Healthy inmates were infected by mosquitoes or by injections of extracts of the mucous glands of female mosquitoes. After contracting the disease, the subjects were treated with various drugs to test their relative efficiency.[21] Over 1,200 people were used in these experiments and more than half died as a result.[22] Other test subjects were left with permanent disabilities. [23]

Immunization experiments

At the German concentration camps of Sachsenhausen, Dachau, Natzweiler, Buchenwald, and Neuengamme, scientists tested immunization compounds and serums for the prevention and treatment of contagious diseases, including malaria, typhus, tuberculosis, typhoid fever, yellow fever, and infectious hepatitis.[24]

Epidemic Jaundice

From June of 1943 till January of 1945 at the concentration camps, Sachsenhausen and Natzweiler, experimentation with epidemic jaundice was conducted. The test subjects were injected with the disease in order to discover new inoculations for the condition. These tests were conducted for the benefit of the German Armed Forces. Many suffered great pain in these experiments. [25]

Mustard gas experiments

At various times between September 1939 and April 1945, many experiments were conducted at Sachsenhausen, Natzweiler, and other camps to investigate the most effective treatment of wounds caused by mustard gas. Test subjects were deliberately exposed to mustard gas and other vesicants (e.g. Lewisite) which inflicted severe chemical burns. The victims' wounds were then tested to find the most effective treatment for the mustard gas burns.[26]

Child victims of Nazi experimentation show incisions where axillary lymph nodes had been surgically removed after they were deliberately infected with tuberculosis at Neuengamme concentration camp. They were later executed.[27]

Sulfonamide experiments

From about July 1942 to about September 1943, experiments to investigate the effectiveness of sulfonamide, a synthetic antimicrobial agent, were conducted at Ravensbrück.[28] Wounds inflicted on the subjects were infected with bacteria such as Streptococcus, Clostridium perfringens (a major causative agent in gas gangrene) and Clostridium tetani, the causative agent in tetanus.[29] Circulation of blood was interrupted by tying off blood vessels at both ends of the wound to create a condition similar to that of a battlefield wound. Infection was aggravated by forcing wood shavings and ground glass into the wounds. The infection was treated with sulfonamide and other drugs to determine their effectiveness.

Sea water experiments

From about July 1944 to about September 1944, experiments were conducted at the Dachau concentration camp to study various methods of making sea water drinkable. These victims were subject to deprivation of all food and only given the filtered sea water.[30] At one point, a group of roughly 90 Roma were deprived of food and given nothing but sea water to drink by Dr. Hans Eppinger, leaving them gravely injured.[18] They were so dehydrated that others observed them licking freshly mopped floors in an attempt to get drinkable water.[31]

A Holocaust survivor named Joseph Tschofenig wrote a statement on these seawater experiments at Dachau. Tschofenig explained how while working at the medical experimentation stations he gained insight into some of the experiments that were performed on prisoners, namely those where they were forced to drink salt water. Tschofenig also described how victims of the experiments had trouble eating and would desperately seek out any source of water including old floor rags. Tschofenig was responsible for using the X-ray machine in the infirmary and describes how even though he had insight into what was going on he was powerless to stop it. He gives the example of a patient in the infirmary who was sent to the gas chambers by Dr. Sigmund Rascher simply because he witnessed one of the low-pressure experiments.[32]

Sterilization and fertility experiments

The Law for the Prevention of Genetically Defective Progeny was passed on 14 July 1933, which legalized the involuntary sterilization of persons with diseases claimed to be hereditary: weak-mindedness, schizophrenia, alcohol abuse, insanity, blindness, deafness, and physical deformities. The law was used to encourage growth of the Aryan race through the sterilization of persons who fell under the quota of being genetically defective.[33] 1% of citizens between the age of 17 to 24 had been sterilized within 2 years of the law passing.

Within 4 years, 300,000 patients had been sterilized.[34] From about March 1941 to about January 1945, sterilization experiments were conducted at Auschwitz, Ravensbrück, and other places by Dr. Carl Clauberg.[26] The purpose of these experiments was to develop a method of sterilization which would be suitable for sterilizing millions of people with a minimum of time and effort. The targets for sterilization included Jewish and Roma populations.[12] These experiments were conducted by means of X-ray, surgery and various drugs. Thousands of victims were sterilized. Aside from its experimentation, the Nazi government sterilized around 400,000 people as part of its compulsory sterilization program.[35] One survivor, who underwent experimentation at Auschwitz, said that the experimentation she endured caused, "fainting from severe pain for a year and a half." Years later she went to the doctor and discovered that her uterus had become one comparable to that of a 4-year-old. [36]

Intravenous injections of solutions speculated to contain iodine and silver nitrate were successful, but had unwanted side effects such as vaginal bleeding, severe abdominal pain, and cervical cancer.[37] Therefore, radiation treatment became the favored choice of sterilization. Specific amounts of exposure to radiation destroyed a person’s ability to produce ova or sperm, sometimes administered through deception. Many suffered severe radiation burns.[38]

M.D. William E. Seidelman is a professor from the University of Toronto who in collaboration with Dr. Howard Israel of Columbia University published a report on an investigation on the Medical experimentation performed in Austria under the Nazi Regime. In that report he mentions a Doctor Hermann Stieve, who used the war to experiment on live humans. Dr. Stieve specifically focused on the reproductive system of women. He would tell women their execution date in advance, and he would evaluate how their psychological distress would affect their menstruation cycles. After they were murdered, he would dissect and examine their reproductive organs. Some of the women were even raped after they were told the date when they would be killed, so that Dr. Stieve could study the path of sperm through their reproductive system.[39]

Experiments with poison

Somewhere between December 1943 and October 1944, experiments were conducted at Buchenwald to investigate the effect of various poisons. The poisons were secretly administered to experimental subjects in their food. The victims died as a result of the poison or were killed immediately in order to permit autopsies. In September 1944, experimental subjects were shot with poisonous bullets, suffered torture and often died.[26]

Incendiary bomb experiments

From around November 1943 to around January 1944, experiments were conducted at Buchenwald to test the effect of various pharmaceutical preparations on phosphorus burns. These burns were inflicted on prisoners using phosphorus material extracted from incendiary bombs.[26]

High altitude experiments

In early 1942, prisoners at Dachau concentration camp were used by Sigmund Rascher in experiments to aid German pilots who had to eject at high altitudes. A low-pressure chamber containing these prisoners was used to simulate conditions at altitudes of up to 20,000 m (66,000 ft). It was rumored that Rascher performed vivisections on the brains of victims who survived the initial experiment.[40] Of the 200 subjects, 80 died outright, and the others were executed.[18] In a letter from April 5, 1942 between Dr. Sigmund Rascher and Heinrich Himmler, Rascher explains the results of a low-pressure experiment that was performed on people at Dachau Concentration camp in which the victim was suffocated while Rascher and another unnamed doctor took note of his reactions. The person was described as 37 years old and in good health before being murdered. Rascher described the victim’s actions as he began to lose oxygen and timed the changes in behavior. The 37 year old began to wiggle his head at 4 minutes, a minute later Rascher observed that he was suffering from cramps before falling unconscious. He describes how the victim then lay unconscious, breathing only 3 times per minute, until he stopped breathing 30 minutes after being deprived of oxygen. The victim then turned blue and began foaming at the mouth. An autopsy followed an hour later.[41]

In a letter from Heinrich Himmler to Dr. Sigmund Rascher on April 13, 1942, Himmler orders Rascher to continue the high altitude experiments and to continue experimenting on prisoners condemned to death and to “determine whether these men could be recalled to life”. If a victim could be successfully resuscitated, Himmler ordered that he be pardoned to “concentration camp for life”.[42]

Blood coagulation experiments

Sigmund Rascher experimented with the effects of Polygal, a substance made from beet and apple pectin, which aided blood clotting. He predicted that the preventive use of Polygal tablets would reduce bleeding from gunshot wounds sustained during combat or during surgery. Subjects were given a Polygal tablet, and shot through the neck or chest, or their limbs amputated without anaesthesia. Rascher published an article on his experience of using Polygal, without detailing the nature of the human trials and also set up a company to manufacture the substance, staffed by prisoners.[43]

Aftermath

Other documented transcriptions from Heinrich Himmler include phrases such as “These researches… can be performed by us with particular efficiency because I personally assumed the responsibility for supplying asocial individuals and criminals who deserve only to die from concentration camps for these experiments.”[44] Many of the subjects died as a result of the experiments conducted by the Nazis, while many others were executed after the tests were completed to study the effects post mortem.[45] Those who survived were often left mutilated, suffering permanent disability, weakened bodies, and mental distress.[18][46] On 19 August 1947, the doctors captured by Allied forces were put on trial in USA vs. Karl Brandt et al., commonly known as the Doctors' Trial. At the trial, several of the doctors argued in their defense that there was no international law regarding medical experimentation.[citation needed] Some doctors also claimed that they had been doing the world a favor. A SS doctor was quoted saying that "Jews were the festering appendix in the body of Europe." He then went on to argue he was doing the world a favor by eliminating them. [8]

The issue of informed consent had previously been controversial in German medicine in 1900, when Dr. Albert Neisser infected patients (mainly prostitutes) with syphilis without their consent. Despite Neisser's support from most of the academic community, public opinion, led by psychiatrist Albert Moll, was against Neisser. While Neisser went on to be fined by the Royal Disciplinary Court, Moll developed "a legally based, positivistic contract theory of the patient-doctor relationship" that was not adopted into German law.[47] Eventually, the minister for religious, educational, and medical affairs issued a directive stating that medical interventions other than for diagnosis, healing, and immunization were excluded under all circumstances if "the human subject was a minor or not competent for other reasons", or if the subject had not given his or her "unambiguous consent" after a "proper explanation of the possible negative consequences" of the intervention, though this was not legally binding.[47]

In response, Drs. Leo Alexander and Andrew Conway Ivy drafted a ten-point memorandum entitled Permissible Medical Experiment that went on to be known as the Nuremberg Code.[48] The code calls for such standards as voluntary consent of patients, avoidance of unnecessary pain and suffering, and that there must be a belief that the experimentation will not end in death or disability.[49] The Code was not cited in any of the findings against the defendants and never made it into either German or American medical law.[50] This code comes from the Nuremberg Trials where the most heinous of Nazi leaders were put on trial for their war crimes. [51] To this day, the Nuremberg Code remains a major stepping stone for medical experimentation. [52]

Modern ethical issues

Frederik Pohl said in a 1963 editorial in Galaxy Science Fiction that despite their cruelty the Nazi experiments produced no useful results; "it was not science and it was not medicine". If the "Herr Doktors" had, he wrote, murdered pregnant women to study their ovaries the crimes would have advanced embryology, but the earliest stages of prenatal development were first observed in Boston in 1942 "without either torture or killing".[53]

The results of the Dachau freezing experiments have been used in some modern research into the treatment of hypothermia, with at least 45 publications having referenced the experiments since the Second World War.[14] This, together with the recent use of data from Nazi research into the effects of phosgene gas, has proven controversial and presents an ethical dilemma for modern physicians who do not agree with the methods used to obtain this data.[31] Some object on an ethical basis, and others have rejected Nazi research purely on scientific grounds, pointing out methodological inconsistencies. In an often-cited review of the Dachau hypothermia experiments, Berger states that the study has "all the ingredients of a scientific fraud" and that the data "cannot advance science or save human lives."[14]

Controversy has also risen from the use of results of biological warfare testing done by the Imperial Japanese Army's Unit 731.[54] The results from Unit 731 were kept classified by the United States until the majority of doctors involved were given pardons.[55]

Tuskegee syphilis experiment

From Wikipedia, the free encyclopedia
 
A doctor draws blood from one of the Tuskegee test subjects.

The Tuskegee Study of Untreated Syphilis in the Negro Male, also known as the Tuskegee Syphilis Study or Tuskegee Syphilis Experiment (/tʌsˈkɡ/ tus-KEE-ghee)[1] was an infamous clinical study conducted between 1932 and 1972 by the U.S. Public Health Service. The purpose of this study was to observe the natural progression of untreated syphilis in rural African-American men in Alabama under the guise of receiving free health care from the United States government.[1] The study was conducted to understand the disease's natural history throughout time and to also determine proper treatment dosage for specific people and the best time to receive injections of treatments.[2]

The Public Health Service started working on this study in 1932 in collaboration with Tuskegee University, a historically black college in Alabama. Investigators enrolled in the study a total of 622 impoverished, African-American sharecroppers from Macon County, Alabama. Of these men, 431 had previously contracted syphilis before the study began, and 169[3] did not have the disease. The men were given free medical care, meals, and free burial insurance for participating in the study. The men were told that the study was only going to last six months, but it actually lasted 40 years.[4] After funding for treatment was lost, the study was continued without informing the men that they would never be treated. None of the men infected were ever told that they had the disease, and none were treated with penicillin even after the antibiotic was proven to successfully treat syphilis. According to the Centers for Disease Control, the men were told that they were being treated for "bad blood", a colloquialism that described various conditions such as syphilis, anemia, and fatigue. "Bad blood"—specifically the collection of illnesses the term included—was a leading cause of death within the southern African-American community.[4]

The 40-year study was controversial for reasons related to ethical standards. Researchers knowingly failed to treat patients appropriately after the 1940s validation of penicillin was found as an effective cure for the disease that they were studying. The revelation in 1972 of study failures by a whistleblower, Peter Buxtun, led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent,[5] communication of diagnosis, and accurate reporting of test results.[6]

By 1947, penicillin had become the standard treatment for syphilis. Choices available to the doctors involved in the study might have included treating all syphilitic subjects and closing the study, or splitting off a control group for testing with penicillin. Instead, the Tuskegee scientists continued the study without treating any participants; they withheld penicillin and information about it from the patients. In addition, scientists prevented participants from accessing syphilis treatment programs available to other residents in the area.[7] The study continued, under numerous US Public Health Service supervisors, until 1972, when a leak to the press resulted in its termination on November 16 of that year.[8] The victims of the study, all African American, included numerous men who died of syphilis, 40 wives who contracted the disease, and 19 children born with congenital syphilis.

The Tuskegee Syphilis Study, cited as "arguably the most infamous biomedical research study in U.S. history",[9] led to the 1979 Belmont Report and to the establishment of the Office for Human Research Protections (OHRP).[10] It also led to federal laws and regulations requiring Institutional Review Boards for the protection of human subjects in studies involving them. The Office for Human Research Protections (OHRP) manages this responsibility within the US Department of Health and Human Services (HHS).[11]

In 1993, President Bill Clinton formally apologized on behalf of the United States to victims of the experiment.

History

Study clinicians

For the most part, doctors and civil servants simply did their jobs. Some merely followed orders, others worked for the glory of science.
— John R. Heller Jr., Director of the Public Health Service's Division of Venereal Diseases[12]
Oliver Wenger

The venereal disease section of the U.S. Public Health Service (PHS) formed a study group in 1932 at its national headquarters. Taliaferro Clark was credited with founding it. His initial goal was to follow untreated syphilis in a group of black men for 6 to 9 months, and then follow up with a treatment phase.[13] When he understood the intention of other study members to use deceptive practices, Clark disagreed with the plan to conduct an extended study.[clarification needed] He retired the year after the study began.

Although Clark is usually assigned blame for conceiving the Tuskegee Study, Thomas Parran Jr. is equally, if not more, deserving of originating the notion of a non-treatment experiment in Macon County, Alabama. As the Health Commissioner of New York State (and former head of the PHS Venereal Disease Division), Parran was asked by the Rosenwald Fund to make an assessment of their survey and demonstration projects in six Southern states. Among his conclusions was the recommendation that, “If one wished to study the natural history of syphilis in the Negro race uninfluenced by treatment, this county (Macon) would be an ideal location for such a study.”[14]

Representing the PHS, Clark had solicited the participation of the Tuskegee Institute (a well-known historically black college in Alabama, now known as Tuskegee University) and of the Arkansas regional Public Health Service office. Eugene Heriot Dibble, Jr., an African-American doctor, was head of the John Andrew Hospital at the Tuskegee Institute. (From 1936-1946, he served as director of the Tuskegee Veterans Administration Medical Center, established in 1923 in the city by the federal government on land donated by the Institute.)

Oliver C. Wenger was the director of the regional PHS Venereal Disease Clinic in Hot Springs, Arkansas. He and his staff took the lead in developing study procedures. Wenger and his staff played a critical role in developing early study protocols. Wenger continued to advise and assist the Tuskegee Study when it was adapted as a long-term, no-treatment observational study after funding for treatment was lost.[15]

Raymond A. Vonderlehr was appointed on-site director of the research program and developed the policies that shaped the long-term follow-up section of the project. His method of gaining the "consent" of the subjects for spinal taps (to look for signs of neurosyphilis) was by portraying this diagnostic test as a "special free treatment". Participants were not told their diagnosis. Vonderlehr retired as head of the venereal disease section in 1943, shortly after the antibiotic penicillin had first been shown to be a cure for syphilis.

Several African American health workers and educators associated with Tuskegee Institute helped the PHS to carry out its experimentation and played a critical role in the progress of the study. The extent to which they knew about the full scope of the study is not clear in all cases. Robert Russa Moton, then president of Tuskegee Institute, and Eugene Dibble, head of the Institute's John Andrews Hospital, both lent their endorsement and institutional resources to the government study. Registered nurse Eunice Rivers, who had trained at Tuskegee Institute and worked at its affiliated John Andrew Hospital, was recruited at the start of the study to be the main contact with the participants in the study.

Vonderlehr advocated for Rivers' participation, as the direct link to the regional African-American community. During the Great Depression of the 1930s, the Tuskegee Study recruited poor lower-class African Americans, who often could not afford health care, by offering them the chance to join "Miss Rivers' Lodge". Patients were told they would receive free physical examinations at Tuskegee University, free rides to and from the clinic, hot meals on examination days, and free treatment for minor ailments.

Based on the available health care resources, Rivers believed that the benefits of the study to the men outweighed the risks. As the study became long term, Rivers became the chief person with continuity. Unlike the national, regional and on-site PHS administrators, doctors, and researchers, some of whom were political appointees with short tenure and others who changed jobs, Rivers continued at Tuskegee University. She was the only study staff person to work with participants for the full 40 years. By the 1950s, Nurse Rivers had become pivotal to the study: her personal knowledge of the subjects enabled maintenance of long-term follow up.

In 1943, Congress passed the Henderson Act, a public health law requiring testing and treatment for venereal disease. By the late 1940s, doctors, hospitals and public health centers throughout the country routinely treated diagnosed syphilis with penicillin. However, the Tuskegee experiment continued to avoid treating the men who had the disease.

In the period following World War II, the revelation of the Holocaust and related Nazi medical abuses brought about changes in international law. Western allies formulated the Nuremberg Code to protect the rights of research subjects. In 1964 the World Health Organization's Declaration of Helsinki specified that experiments involving human beings needed the "informed consent" of participants. But no one appeared to have reevaluated the protocols of the Tuskegee Study according to the new standards and in light of treatment available for the disease which is fatal 8–58% of the time. On July 25, 1972, word of the Tuskegee Study was reported by Jean Heller of the Associated Press; the next day The New York Times carried it on its front page, and the story captured national attention. Peter Buxtun, a whistleblower who was a former PHS interviewer for venereal disease, had leaked information after failing to get a response to his protests about the study within the department. He gave information to the Washington Star and The New York Times. John R. Heller Jr. of PHS, who in later years of the study led the national division, still defended the ethics of the study, stating, "The longer the study, the better the ultimate information we would derive."[16] Author James Jones editorialized about Heller, suggesting that his opinion was, "The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people."[17]

Study details

Subject blood draw, c. 1953

A Norwegian study in 1928 had reported on the pathologic manifestations of untreated syphilis in several hundred white males. This study is known as a retrospective study, since investigators pieced together information from the histories of patients who had already contracted syphilis but remained untreated for some time.

Subjects talking with study coordinator, Nurse Eunice Rivers, c.1970

The Tuskegee study group decided to build on the Oslo work and perform a prospective study to complement it. Researchers could study the natural progression of the disease as long as they did not harm their subjects. The researchers involved with the Tuskegee experiment reasoned that they were not harming the black men involved in the study because they were unlikely to get treatment for their syphilis and further education would not diminish their inherent sex drive. Even at the beginning of the study, major medical textbooks had recommended that all syphilis be treated, as the consequences were quite severe. At that time, treatment included arsenic therapy and the "606" formula.[18] The researchers reasoned that the knowledge gained would benefit humankind; however, it was determined afterward that the doctors did harm their subjects by depriving them of appropriate treatment once it had been discovered. The study was characterized as "the longest non-therapeutic experiment on human beings in medical history."[7]

The US Public Health Study of Syphilis at Tuskegee began as a 6-month descriptive epidemiological study of the range of pathology associated with syphilis in the Macon County population. At that time, it was believed that the effects of syphilis depended on the race of those affected. For African Americans, physicians believed that their cardiovascular system was more affected than the central nervous system.[19] Initially, subjects were studied for six to eight months and then treated with contemporary methods, including Salvarsan, mercurial ointments, and bismuth. These methods were, at best, mildly effective. The disadvantage was that these treatments were all highly toxic. The Tuskegee Institute participated in the study, as its representatives understood the intent was to benefit public health in the local poor population.[20] The Tuskegee University-affiliated hospital effectively loaned the PHS its medical facilities, and other predominantly black institutions and local black doctors participated as well.

The Rosenwald Fund, a major Chicago-based philanthropy devoted to black education and community development in the South, provided financial support to pay for the eventual treatment of the patients. They had previously collaborated with Public Health Services in a study of syphilis prevalence in over 2,000 black workers in Mississippi's Delta Pine and Land Company in 1928, and helped provide treatment for 25% of the workers who had tested positive for the disease.[21] Study researchers initially recruited 399 syphilitic Black men, and 201 healthy Black men as controls.

Table from U.S. Public Health Service summarising participants in the study

Continuing effects of the Stock Market Crash of 1929 and the beginning of the Great Depression led the Rosenwald Fund to withdraw its offer of funding. Study directors issued a final report as they thought this might mean the end of the study once funding to buy medication for the treatment phase of the study was withdrawn.

Medical ethics considerations were limited from the start and rapidly deteriorated. The PHS asked black Tuskegee Institute physicians to participate in the study by offering funds, employment, and interns to encourage the ongoing participation of the patients. Additionally, the study intentionally employed Eunice Rivers, a black nurse from Macon County, to be primary source of contact and build personal, trusting relationships with patients to promote their participation.[21] To ensure that the men would show up for the possibly dangerous, painful, diagnostic, and non-therapeutic spinal taps, the doctors sent the 400 patients a misleading letter titled "Last Chance for Special Free Treatment". The study also required all participants to undergo an autopsy after death in order to receive funeral benefits. After penicillin was discovered as a cure, researchers continued to deny such treatment to many study participants. Many patients were lied to and given placebo treatments so that researchers could observe the full, long-term progression of the fatal disease.[20]

Taking a blood sample as part of the Tuskegee Syphilis Study

The Tuskegee Study published its first clinical data in 1934 and issued its first major report in 1936. This was prior to the discovery of penicillin as a safe and effective treatment for syphilis. The study was not secret since reports and data sets were published to the medical community throughout its duration.

During World War II, 250 of the subject men registered for the draft. These men were consequently diagnosed as having syphilis at military induction centers and ordered to obtain treatment for syphilis before they could be taken into the armed services.[22] PHS researchers attempted to prevent these men from getting treatment, thus depriving them of chances for a cure. A PHS representative was quoted at the time saying: "So far, we are keeping the known positive patients from getting treatment."[22] Despite this, 96% of the 90 original test subjects reexamined in 1963 had received either arsenical or penicillin treatments from another health provider.[23]

By 1947 penicillin had become standard therapy for syphilis. The US government sponsored several public health programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate venereal disease came to Macon County, study researchers prevented their patients from participating.[22]

By the end of the study in 1972, only 74 of the test subjects were alive. Of the original 399 men, 28 had died of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children were born with congenital syphilis. The Tuskegee University Legacy Museum has on display a check issued by the United States government on behalf of Dan Carlis to Lloyd Clements, Jr., a descendant of one of the Tuskegee Syphilis Study participants.[24] Lloyd Clements, Jr.'s great-grandfather Dan Carlis and two of his uncles, Ludie Clements and Sylvester Carlis, were in the study. Original legal paper work for Sylvester Carlis related to the Tuskegee Syphilis Study is on display at the museum as well. Lloyd Clements, Jr. has worked with noted historian Susan Reverby concerning his family's involvement with the Tuskegee Syphilis Study.

Study termination

Peter Buxtun, a PHS venereal disease investigator, the "whistleblower"

Group of Tuskegee Experiment test subjects

Charlie Pollard, survivor

Herman Shaw, survivor

The first dissent against the Tuskegee study was Irwin Schatz, a young Chicago doctor only four years out of medical school. In 1965, Schatz read an article about the study in a medical journal, and wrote a letter directly to the study's authors confronting them with a declaration of brazen unethical practice.[25] His letter, read by Anne R. Yobs (one of the study's authors), was immediately ignored and filed away with a brief memo that no reply would be sent.[26]

In 1966 Peter Buxtun, a PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases to express his concerns about the ethics and morality of the extended Tuskegee Study. The Center for Disease Control (CDC), which by then controlled the study, reaffirmed the need to continue the study until completion; i.e., until all subjects had died and been autopsied. To bolster its position, the CDC received unequivocal support for the continuation of the study, both from local chapters of the National Medical Association (representing African-American physicians) and the American Medical Association (AMA).

In 1968 William Carter Jenkins, an African-American statistician in the PHS, part of the Department of Health, Education, and Welfare (HEW), founded and edited The Drum, a newsletter devoted to ending racial discrimination in HEW. The cabinet-level department included the CDC. In The Drum, Jenkins called for an end to the Tuskegee Study. He did not succeed; it is not clear who read his work.[27]

Buxtun finally went to the press in the early 1970s. The story broke first in the Washington Star on July 25, 1972. It became front-page news in the New York Times the following day. Senator Edward Kennedy called Congressional hearings, at which Buxtun and HEW officials testified. As a result of public outcry, the CDC and PHS appointed an ad hoc advisory panel to review the study. The panel found that the men agreed to certain terms of the experiment, such as examination and treatment. However, they were not informed of the study's actual purpose.[1] The panel then determined the study was medically unjustified and ordered its termination.

As part of the settlement of a class action lawsuit subsequently filed by the NAACP on behalf of study participants and their descendants, the U.S. government paid $10 million ($49.6 million in 2017) and agreed to provide free medical treatment to surviving participants and to surviving family members infected as a consequence of the study; Congress created a commission empowered to write regulations to deter such abuses from occurring in the future.[28]

A collection of materials compiled to investigate the study is held at the National Library of Medicine in Bethesda, Maryland.[29]

Aftermath

In 1974 Congress passed the National Research Act and created a commission to study and write regulations governing studies involving human participants. Within the US Department of Health and Human Services, the Office for Human Research Protections (OHRP) was established to oversee clinical trials. Now studies require informed consent,[5] communication of diagnosis, and accurate reporting of test results.[6] Institutional review boards (IRBs), including laypeople, are established in scientific research groups and hospitals to review study protocols and protect patient interests, to ensure that participants are fully informed.

In 1994, a multi-disciplinary symposium was held on the Tuskegee study: Doing Bad in the Name of Good?: The Tuskegee Syphilis Study and Its Legacy at the University of Virginia. Following that, interested parties formed the Tuskegee Syphilis Study Legacy Committee to develop ideas that had arisen at the symposium. It issued its final report in May 1996.[30] The Committee had two related goals: (1) President Bill Clinton should publicly apologize for past government wrongdoing related to the study and (2) the Committee and relevant federal agencies should develop a strategy to redress the damages.[31]

A year later on May 16, 1997, President Bill Clinton formally apologized and held a ceremony at the White House for surviving Tuskegee study participants. He said:
What was done cannot be undone. But we can end the silence. We can stop turning our heads away. 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 ... To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist.[32]
Five of the eight study survivors attended the White House ceremony.

The presidential apology led to progress in addressing the second goal of the Legacy Committee. The federal government contributed to establishing the National Center for Bioethics in Research and Health Care at Tuskegee, which officially opened in 1999 to explore issues that underlie research and medical care of African Americans and other under-served people.[33]

In 2009 the Legacy Museum opened in the Bioethics Center, to honor the hundreds of participants of the Tuskegee Study of Untreated Syphilis in the Negro Male.[33][34]

The revelations of mistreatment under the Tuskegee Syphilis Study are believed to have significantly damaged the trust of the black community toward public health efforts in the United States.[35][36] Observers believe that the abuses of the study may have contributed to the reluctance of many poor black people to seek routine preventive care.[37][36] A 1999 survey showed that 80% of African American men believe the men in the Tuskegee Syphilis Experiment had been injected with syphilis.[38] A 2016 paper published by the National Bureau of Economic Research finds "that the historical disclosure of the [Tuskegee experiment] in 1972 is correlated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men. Our estimates imply life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for approximately 35% of the 1980 life expectancy gap between black and white men."[36] However, other studies, such as the Tuskegee Legacy Project Questionnaire, have challenged the degree to which knowledge of the Tuskegee experiments have kept black Americans from participating in medical research.[39] This study shows that, even though black Americans are four times more likely to know about the Syphilis trials than are whites, they are two to three times more willing to participate in biomedical studies.[40] Other studies concluded that the Tuskegee Syphilis trial has played a minor role in the decisions of black Americans to decline participation as research subjects.[41] Of the studies that have investigated the willingness of black Americans to participate in medical studies, they have not drawn consistent conclusions related to the willingness and participation in studies by racial minorities. Some of the factors that continue to limit the credibility of these few studies is how awareness differs significantly across studies. For instance, it appears that the rates of awareness differ as a function of method of assessment, study participants who reported awareness of the Tuskegee Syphilis Trials are often misinformed about the results and issues, and awareness of the study is not reliably associated with unwillingness to participate in scientific research.[42][43][44][45][46]

Distrust of the government, in part formed through the study, contributed to persistent rumors during the 1980s in the black community that the government was responsible for the HIV/AIDS crisis by having deliberately introduced the virus to the black community as some kind of experiment.[47] In February 1992 on ABC's Prime Time Live, journalist Jay Schadler interviewed Dr. Sidney Olansky, Public Health Services director of the study from 1950 to 1957. When asked about the lies that were told to the study subjects, Olansky said, "The fact that they were illiterate was helpful, too, because they couldn't read the newspapers. If they were not, as things moved on they might have been reading newspapers and seen what was going on."[21]

Ethical implications

Depression-era U.S. poster advocating early syphilis treatment. Although treatments were available, participants in the study did not receive them.

Tuskegee highlighted issues in race and science.[48] The aftershocks of this study, and other human experiments in the United States, led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the National Research Act. The latter requires the establishment of institutional review boards (IRBs) at institutions receiving federal support (such as grants, cooperative agreements, or contracts). Foreign consent procedures can be substituted which offer similar protections and must be submitted to the Federal Register unless a statute or Executive Order requires otherwise.

Writer James Jones said that physicians were fixated on African American sexuality, and believing that African Americans willingly had sexual relations with those who were infected (although none had been told his diagnosis) resulted in their believing that individuals were solely responsible for contracting the disease.[49] One researcher critiqued how the study was administered and its change in purpose. He said that it was "the economic exploitation of humans as a natural resource of a disease that could not be cultivated or animals in order to establish and sustain U.S. superiority in patented commercial biotechnology".[50]

Due to the lack of information, the participants were manipulated into continuing the study without full knowledge of their role or their choices.[51] Since the late 20th century, IRBs established in association with clinical studies require that all involved in study be willing and voluntary participants.[52][53]

In popular culture

Social privilege

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