By MURPHY BROWNE (Abena Agbetu)
On November 16, 1972, after 40 years of torture for a group of African Americans in Alabama, the U.S. government ended the infamous syphilis experiment, better known as the Tuskegee Study.
This inhumane experiment using African American men, women and children as guinea pigs, began in 1932 in Macon County, Alabama. The men involved thought they were receiving free health care from the government; instead they were treated as if they were laboratory animals.
Some 600 African American farm workers and tenant farmers and their families were used in the public health service syphilis study.
For participating in the study, the men were each given free medical care, meals and burial insurance of up to $50. However, the wives and partners of these men also contracted the disease and many of their children were born with congenital syphilis.
Children born with congenital syphilis suffer brain damage, blindness, deafness and several deformities. The families were never told they had syphilis, nor were they ever treated for it. In the 1940s, the medical personnel involved in this horrific violation of human rights were well aware that penicillin was an effective cure for syphilis. By 1947, penicillin had become standard treatment for syphilis and was available to the medical staff involved with the study but penicillin was never offered to any of the men being “studied”.
According to the Centers for Disease Control, the men were told they were being treated for “bad blood”, a local term used to describe several illnesses, including anemia and fatigue. Even when the victims died of the disease, the families were not made aware of the cause. If these families had been White they would not have been victimized by such an experiment because the law in Alabama at the time required that physicians provide proper care for patients with communicable diseases.
In 1927, the Alabama Legislature enacted a venereal disease law which stated in part: “The county health officer shall require persons infected with venereal disease to report for treatment to a reputable physician and continue treatment until such disease, in the judgment of the attending physician, is no longer communicable.”
Not only did the architects of this study (Surgeon General Hugh Cumming and assistant Surgeons General, Taliaferro Clark and Raymond Aloysius Vonderlehr) withhold treatment from the unfortunate victims of the study, they also prevented them from getting treatment elsewhere.
In 1942, Vonderlehr was informed that some of the men were being called for medical examination prior to being drafted into the Armed Forces and would receive treatment to cure them of syphilis. He ensured that they were excluded from the draft and that they did not receive treatment.
In explaining why Macon County was chosen as the site for the experiment, Clark wrote that the “rather low intelligence of the Negro population and the depressed economic conditions” made Macon County “a natural laboratory; a ready-made situation”.
On July 23, 1973, eight months after the study ended, a $1.8 billion class action suit was filed by civil rights lawyer Fred Gray who demanded $3 million in damages for each survivor and the heirs of those deceased. In December 1974 an out of court settlement was reached. The government agreed to pay $10 million, where each survivor received $37,500 in damages and the heirs of the deceased received $15,000 each. In 1974, two years after the government was forced to end the study, Congress passed the National Research Act and created a commission to study and write regulations governing studies involving human participants.
It took another 23 years for the victims to receive acknowledgement from the government that a wrong had been done. On May 16, 1997, President Bill Clinton formally apologized at the White House during a ceremony in which five of the eight remaining survivors were present.
Clinton’s apology included acknowledgement that the study was racist: “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.”
In his 1993 book, Bad Blood: The Tuskegee Syphilis Experiment, James H. Jones wrote: “As a symbol of racism and medical malfeasance, the Tuskegee Study may never move the nation to action, but it can change the way Americans view illness. Hidden within the anger and anguish of those who decry the experiment is a plea for government authorities and medical officials to hear the fears of people whose faith has been damaged, to deal with their concerns directly, and to acknowledge the link between public health and community trust.
“Government authorities and medical officials must strive to cleanse medicine of social infection by eliminating any type of racial or moral stereotypes of people or their illnesses. They must seek to build a health system that will make adequate health care available to all Americans. Anything less will leave some groups at risk, as it did the subjects of the Tuskegee Study.”
Unfortunately, the Alabama experiment is just one of such cases. The story of Henrietta Lacks, an African American woman whose cells have been used since 1951, is a case in point. Lacks was 31 years old when she was diagnosed with cancer at Johns Hopkins Hospital in 1951. Without her knowledge or permission, medical staff took tissue from her body and used the tissue in various experiments. Although over the years the cells and tissue from this woman’s body have been used in countless experiments and medical research leading to groundbreaking medical advances (including the polio vaccine and genetic mapping) and has led to fame/recognition for some and wealth for others, her descendants have lived in poverty and could barely afford medical coverage.
In 2010, the book, The Immortal Life of Henrietta Lacks, was published by Rebecca Skloot who is described by one reviewer as “a young White, idealistic journalist with no connection to the Lackses, apart from a fascination in the story instilled by a middle-school biology teacher, (who) sought to right the wrongs of the past by telling the full story.”
In her 2006 book, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, African American professor Harriet A. Washington has documented many of the horrendous experiments done by White medical personnel (including government agencies) who have used African Americans as guinea pigs. The Tuskegee experiment, which is the most publicized, did not bring an end to the practice. Washington documents in her book that Columbia University, between 1992 and 1997, conducted research using African American boys from six to 10 years old to establish a link between genetics and violence. The 126 boys from New York City were given the drug fenfluramine (reported to cause heart valve disease) http://www.rense.com/health/drugchildren.htm.
An article published in the New York Times dated April 15, 1998 quotes Vera Sharav, the director of the New York patient advocacy group, Citizens for Responsible Care in Psychiatry and Research: ”What value does the President’s apology for Tuskegee have when there are no safeguards to prevent such abuses now? These racist and morally offensive studies put minority children at risk of harm in order to prove they are generally predisposed to be violent in the future.”
The experience of African Americans used as guinea pigs in medical experiments and the subsequent exposure has served to change laws but people who live in poverty, especially racialized people, need to be vigilant.