First, Do No Harm

Conquest: Sexual Violence and American Indian Genocide. By Andrea Smith. 2006: South End Press, Cambridge, MA
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. By Harriet A. Washington. 2006: Broadway Books,New York.

By Judith Deutsch (reviewer) | 2008-07-01 12:00:00

People grappling with the ills of our time would do well to study the two books reviewed here, which are a necessary reminder of the profound destructiveness wreaked by our best and brightest.

Harriet Washington begins her book by describing the venerated father of gynecology, James Marion Sims. Memorials to him grace the New York Academy of Medicine bordering Central Park, the capitol grounds in South Carolina, Alabama, and a French Hospital. Dr. Sims was president of the American Medical Association and invented surgical instruments that he first used on black female slaves in the 1840s. A painting commissioned by the pharmaceutical company Parke-Davis depicts Sims with professional demeanor, gazing at a kneeling slave in simple servants' dress, head rag and bare feet. "This innocuous tableau could hardly differ more from the gruesome reality in which each surgical scene was a violent struggle between the slaves and physicians, and each woman's body was a bloodied battleground." Sims performed his gynecological experiments on naked, unanesthetized slave women. "Not until he had experimented with his surgeries on Betsey and her fellow slaves for years did Sims essay to cure white women."

Slaves never benefited from his findings, but Sims became rich and famous treating white women. Washington hoped to have this painting on her book cover but Pfizer executives refused to grant permission. She writes "This act of censorship exemplifies the barriers some choose to erect in order to veil the history of unconscionable medical research with blacks."

The paradigmatic case of medical abuse was the Tuskegee Syphilis Study conducted between 1932 and 1972. In this case, African Americans with syphilis were told by the US Public Health Service that they were being treated for the disease, but over the entire forty years they were never told that they were the subjects of an experiment and that treatment was intentionally withheld. The research itself required painful and invasive procedures. The researchers were clearly racist. The senior PHS [Public Health Service] officer wrote: "There is one danger in the latter plan and that is if the colored population becomes aware that accepting free hospital care means a post-mortem, every darkey will leave Macon County."

Another PHS physician wrote about the inadvisability of offering a cure: "Perhaps here, in conjunction with tuberculosis, will be the end of the negro problem. Disease will accomplish what man cannot do."

Sitting on the congressional committee that eventually investigated Tuskegee was Jay Katz, a Yale law professor whose specialty is informed consent. He acknowledged the committee's terrible decision to destroy the taped interviews of the victims, a direct result of the panel members' passivity and submissiveness to authority.

Washington documents how illnesses "were also induced when subjects were administered toxic substances or deliberately exposed to a wide range of biological hazards, including lethal radiation doses, hazardous experimental technologies, a wide range of untested chemical products, risky non-therapeutic vaccines, and injection with infections agents."

In the 1920s and 1930s, the Rockefeller Foundation supported researchers who killed black syphilitics outright in order to test a theory of treatment. She shows how all arms of the government and the most prestigious universities (such as Harvard, Yale, the University of California at San Francisco, Johns Hopkins, and Columbia University) collaborated knowingly in deceptive experimentation that contravenes regulations regarding informed consent, professional standards around best practices, and laws about racial discrimination. Some research has a clear racist aim, such as biochemical work aiming to differentiate ethnic groups for the purpose of pharmaceutical profit or biological warfare. At present, people of color are imprisoned at a disproportionate rate and are coerced to participate in drug research where they are not offered the best available therapy.

It is particularly pertinent to study the history of eugenics in the light of current discussions on stabilizing population growth, particularly in sub-Saharan Africa and in southeast Asia, as a response to climate change and to the culpability of the West in creating this crisis. Both black and Native women have been disparaged by eugenics theory as unfit mothers and as overly sexual.

Margaret Sanger, known as a women's rights advocate and founder of Planned Parenthood, is less known for her racist beliefs. She wrote that "the most successful educational approach to the Negro is through a religious appeal....We do not want the word to get out that we want to exterminate the Negro population, and the minister is the man who can straighten out that idea if it occurs to any of their more rebellious members."

Both Washington and Smith write about the thousands of unnecessary hysterectomies, also known as the "Mississippi appendectomy," performed deceptively and without informed consent on thousands of women. Smith reports that in the 1970s, up to 50% of Native women in some states were sterilized and that "all the pureblood women of the Kaw tribe of Oklahoma have now been sterilized." Both authors describe in detail the administering under coercion of two dangerous contraceptive methods, Norplant and Depo-Provera. "Prior to its approval, Norplant had been tested in several Global South countries. The BBC video The Human Laboratory (1995) documented how women receiving Norplant in Bangladesh without their informed consent were not able to have it removed when they developed side effects." There were similar reports from Haiti, India, and from Native and African Americans. The large pharmaceutical companies and the WHO disregard these facts.

While people of color continue to be subjects of medical experimentation without informed consent, they rarely benefit from medical advances. In the US, infant mortality of African Americans is twice that of whites. The real black diabetes rate is probably double that of whites. Cancer is diagnosed later in blacks, and they have the nation's highest rate of cancer and cancer deaths. "A closer look at the troubling numbers reveals that blacks are dying not of exotic, incurable, poorly understood illnesses nor of genetic diseases that target only them, but rather from common ailments that are more often prevented and treated among whites than among blacks." Similarly, Native Americans have a tuberculosis rate 533% higher than the national average, the infant mortality rate is 81 percent higher, and they have a life expectancy of 47 years).

Experimentation continues and goes beyond the boundaries of North America to other vulnerable societies where researchers are even freer to disregard professional standards. A representative case in point was recently reported in the Guardian Weekly. On 29/02/08, there was a 3-page celebratory article "War Against Malaria." With imagery from heroic battles, the author describes the experimental vaccination of 340 babies in Tanzania. There was no indication that the parents were informed of the experimental nature of the drug trial, and although there was a large picture of a child and a bed net, it was clear that none of the families were offered bed nets [bed nets can reduce transmission by as much as 90%] . In order to complete the experiment, the babies would have to be infected with the disease. Half the babies were given RTS,S and the other half received a control vaccine that was not identified. It was clear that the author was in fact reporting a drug war between Novartis and GlaxoSmithKline in Africa. One week later, the Guardian reported in a short article that a malaria drug was withdrawn in Africa because of its side effects. GlaxoSmithKline removed Lapdap from the market, three years after the World Health Organization warned that it could cause severe anemia in children who would require blood transfusions. Clearly blood transfusions were not available in Africa. Further, the drug had a warning that it should not be given to patients who had a hereditary enzyme disorder, but the test is unavailable in most of Africa and as many as 25% of Africans have the disorder. What is also persistent, and consistent, is the absolute impunity of the people who are responsible for these life-threatening practices.

Many of the devastating effects of science and technology are now well-known --the Green Revolution, dams, biofuels, conventional and non-conventional weapons, but perhaps most disturbing is the endangering of life by the health sciences. Washington writes that "the experimental suffering of black Americans has taken many forms: fear, profound deception, psychological trauma, pain, injection with deadly agents, disfigurement, crippling, chronic illness, undignified display, intractable pain, stolen fertility, and death." It is clear that knowing history, eradicating these racist practices, righting socio-economic inequities, and the absolute integrity of researchers must go hand in hand when addressing all of our current crises.

Reviewed by Judith Deutsch, a Toronto psychoanalyst and current president of Science for Peace.