Dangerous Medicine: The Story Behind Human Hepatitis Experiments – Review | science and nature books

For three decades after World War II, American scientists and physicians conducted a program of research of startling ambition – and jaw-dropping moral neglect. They deliberately infected more than 1,000 people, including at least 100 children, with hepatitis, a disease that can trigger chronic liver disease and cancer.

Very few of those who were subjected to this experimentation had any great idea of ​​what was being done to them. Many were poor and uneducated and came from prisons, asylums and orphanages. A disproportionate number were black.

“I don’t know of any series of problematic infectious disease studies involving a wider range of devalued and stigmatized groups,” Sydney Halpern tells us in this chilling and callous account of a mass experiment that violated rights and health. underprivileged Americans from 1942 to 1972. .

Subjects included prison inmates, project objectors who were already derided as “yellow bellies” and adults and minors with developmental disabilities. “The use of such a wide range of marginalized groups is staggering,” adds Halpern, an American sociologist and bioethicist.

Hepatitis B virus particles under the microscope. Photograph: Erskine Palmer/AP

The fact that this massive violation of human rights has continued for so long is perhaps the most extraordinary aspect of this story. How could these decades-long trials have been allowed in a society that believed itself to be spared the crimes that had characterized its Nazi opponents?

Halpern struggles to find rational answers to such questions, but ends up struggling to find consistency in the motivations of the scientists involved or to uncover any doubts they may have had about the ethics of their behavior. The nation had enabled the creation of a military-biomedical elite who decided on the need to control disease and defend the nation justified actions that clearly led to the early death of innocent people. Worse, they were largely supported by a deferential and deferential press.

Hepatitis is a disease characterized by liver inflammation, jaundice, fever and exhaustion and is caused, as we now know, by three different virus variants: A, B and C. In some cases, people infected can develop cirrhosis and liver cancer later. the life.

In 1942, a major epidemic occurred among American soldiers. This was attributed to a contaminated batch of yellow fever vaccine whose serum came from hepatitis carriers. Scientists decided to take advantage of these soiled samples and used them to infect men, women and, later, children in an effort to better understand hepatitis.

These studies have expanded over the decades, with researchers persuading their recruits to directly ingest samples of contaminated material. These included milkshakes made from infected human feces mixed with chocolate milk in an attempt to disguise its true contents. “What scientists have done is create a group of hepatitis carriers at risk for slow-simmering, life-threatening liver disease,” Halpern writes. The exact death toll as a direct result of the US hepatitis program is unclear, as its operations were so clandestine. Undoubtedly, there would have been deaths.

All of these dangers were unknown when the hepatitis program began, Halpern acknowledges. Yet even when they became evident, no one bothered to try to track down those who had developed liver disease or identify those who had died as a result of the scientists’ actions.

Ultimately, the curriculum was overturned by the activism of the 1960s. Campaigns against the Vietnam War and for minority rights increased sensitivity to the actions of the authorities, and young doctors began to question the program with increasing vigor. “I moved easily from civil rights to patient rights,” a young doctor told Halpern. The program effectively ended in 1972.

Halpern’s story is chilling, told with commendable clarity and brevity and, most importantly, is of crucial relevance today. The galvanized emergence of Covid-19 calls for the creation of experiments in which volunteers are infected with SARS-CoV-2 to help understand how the disease spreads and behaves. Some of these studies are continuing.

But as she warns, the long-term consequences of the infection are unknown and likely won’t be fully understood for years. “It is therefore vitally important to understand human experiences with dangerous viruses during a previous emergency.” The US hepatitis program has much to teach us in this regard.

dangerous medicine by Sydney Halpern is published by Yale University Press (£25). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply

Comments are closed.