It's not every day that you get a book about medical experimentation on humans in the mail, so when one arrived from the lovely publicists at Blue Slip Media, it got my attention.
FOR THE GOOD OF MANKIND? The Shameful History of Human Medical Experimentation is a slender but fact-packed nonfiction book by Vicki Oransky Wittenstein. Part history, part ethical study, part human rights narrative, this thought-provoking volume, geared toward the high school crowd, will get your attention and provide an excellent introduction to a range of topics from the (mis)treatment of slaves, prisoners, orphans, minorities, and the mentally ill to war crimes in Nazi Germany to the rules for testing of medical treatments and vaccines on humans to genetic testing and stem-cell research and more.
The book is separated into five chapters. The first, "Creating Human Guinea Pigs", covers medical research on humans from roughly the end of the 18th century to the start of the 20th century. Beginning with discussion of the Hippocratic oath and the way medical research grew over time as a result of scientific curiosity as well as hit-or-miss medical tactics, it lays the groundwork for the ethical questions that underpin the remainder of the book, including whether informed consent is necessary when dealing with human test subjects, whether hiding the truth from the subjects can be justified, and who, exactly, can give consent in the first place. As is pointed out, in the 1800s, slave-owners gave consent for enslaved African Americans to be tested, often in horrifyingly painful ways. If any payment was received for the test subject's participation, it went to the slave holder, not the participant.
Chapter Two is entitled "Nazi Crimes Against Humanity", and includes introductory information on the experiments performed by Josef Mengele and other German doctors/scientists. The details are (quite thankfully) not provided on the precise experiments performed, which makes this book a great resource for someone who wants to discuss the topic of human medical experimentation without reading detailed accounts of "tests" that amounted to torture. The chapter ends with discussion of the Nuremberg trials, held after the war, in which some Nazi doctors were convicted for war crimes and others were not, often by using "the Nuremberg defense" ("I was only following orders. I had no choice." More or less.) Once some of the atrocities came to light, and especially since most of the Nazi doctors showed no remorse, the international community formulated what came to be known as the Nuremberg Code, a list of ten ethical standards for medical experiments involving human subjects. "The first and most important standard deals with individual consent. The code states that an individual's consent should be voluntary. This means that no one should be forced or coerced to undergo an experiment." (p. 29)
Chapter Two and its focus on Germany's behavior during World War II is followed by Chapter Three, "Exploitation in the Name of War," which focuses on undisclosed experiments performed on human subjects in the United States before, during and after World War II, many of which involved radiation exposure, although trials including malaria exposure and treatment are also mentioned. Some of those who tested malaria treatments were prisoners, a topic which is picked up more in the next chapter.
Chapter Four is entitled "Shifting Attitudes in the Wake of Scandal", and it starts out in Holmesburg Prison in Pennsylvania, where prisoners participated in medical experiments for the U.S. Army, which included exposure to chemical weapons, administration of mind-altering drugs, and more. Both the CIA and, later, universities and drug companies, took advantage of prisoners for the purposes of conducting research. Moving on from prisons, this chapter discusses experimentation on developmentally delayed children (hepatitis A), experimentation on prisoners without disclosing what they were being injected with (the answer: cancer cells), and the Tuskegee Syphilis Study, in which African American men were not told precisely what was wrong with them, nor were they provided with treatment for the painful disease once treatment became available - rather, they were monitored in a sort of "fact-finding" mission by the U.S. Public Health Service for another 30 or more years. Outrage over the Tuskegee scandal finally prompted the U.S. to adopt something like the Nuremberg Code for its own research purposes, followed by something called the Common Rule.
The final chapter of the book, "Can We Safeguard Human Risks?", the limits of "informed consent" and the nature of whether participation in a study is voluntary or coerced are examined, and the notion of modern clinical trials is explained in concise detail. One gets the sense that the trials may be better explained in this book than in some real-life instances when people sign up for clinical trials, although the reasons why people might volunteer for trials are examined and discussed as well. The "outsourcing" of clinical trials to less-developed countries with different safety standards or medical standards is also discussed, including two overseas experimentation scandals, one from as recently as 1996. The chapter includes an explanation and discussion of stem cells and gene therapy, the ethics of "ownership" of biospecimens, the questionable existence of "professional human guinea pigs", and more. The book concludes with a three-page section entitled "Critical Analysis: What Do You Think?", which provides excellent ideas for topics or angles in which to discuss human medical experimentation.
This book is a must-read for anyone wanting to learn more about this interesting topic, or for anyone who wants to get started on a paper on human experimentation. (Hint: You can probably find a good topic in that "Critical Analysis" section, and enough information in the Source Notes and "For Further Information" pages to get you started.