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Against Their Will: The Secret History of Medical Experimentation on… (2013)

by Allen M. Hornblum

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6512359,557 (3.16)5
"The sad history of young children, especially institutionalized children, being used as cheap and available test subjects - the raw material for experimentation - started long before the atomic age and went well beyond exposure to radioactive isotopes. Experimental vaccines for hepatitis, measles, polio and other diseases, exploratory therapeutic procedures such as electroshock and lobotomy, and untested pharmaceuticals such as curare and thorazine were all tested on young children in hospitals, orphanages, and mental asylums as if they were some widely accepted intermediary step between chimpanzees and humans. Occasionally, children supplanted the chimps. Bereft of legal status or protectors, institutionalized children were often the test subjects of choice for medical researchers hoping to discover a new vaccine, prove a new theory, or publish an article in a respected medical journal. Many took advantage of the opportunity. One would be hard-pressed to identify a researcher whose professional career was cut short because he incorporated week-old infants, ward-bound juvenile epileptics, or the profoundly retarded in his experiments. In short, involuntary, non-therapeutic, and dangerous experiments on children were far from an unusual or dishonorable endeavor during the last century"--… (more)
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This review was written for LibraryThing Early Reviewers.
I'd read other works which briefly touched on the subject matter found in Against Their Will, so I was looking forward to an investigative treatment offered her. Unfortunately, I have to agree with another reviewer who was disappointed by the lack of objectivity the authors displayed. They seemed to let their own revulsion at the events described get in the way of a more robust exploration of the subject. At times, I felt as if I was being preached to about the moral evils being committed. While I certainly concur about the horrible things done, I wanted much more of a documentation history than a screed.
  IslandDave | Nov 5, 2014 |
This review was written for LibraryThing Early Reviewers.
In an episode in one of my favorite comic strips (Zippy the Pinhead), Zippy's evil twin Zerbina runs for president on the platform that includes a proposal to use orphans to test for radiation leaks in nuclear power plants. The humor is purposely grim; but who'd have imagined that a few decades ago, such a proposal might well have sounded reasonable. This book documents the use in medical experiments of a variety of institutionalized individuals in the US, including mental patients, uninformed adults, and even children with severe mental handicaps. The episodes documented represent a dark side -- perhaps the darkest -- of modern medical history. Indeed, it bears some similarities to the bizarre experimentation in Nazi concentration camps in the 1940s.

The scope and nature of the abuses documented in this work are stunning. Surprisingly, little of the information provided in this work has previously come to light. While most informed US citizens will know about the Tuskegee experiments on syphilis, and forced sterilization of mental patients, herein they will learn of a wide range of experiments conducted by prominent researchers and physicians. This is no sociological study -- the authors are unable to estimate numbers of individuals involved and the scope of the studies in question. Nonetheless, by focusing on particular institutions and lines of research, and by drawing on historical records and published papers, the authors offer a convincing and disturbing perspective on widespread "research" practices that would be deemed entirely unacceptable and illegal today. Among the more effective lines of evidence provided herein are results from interviews with living victims as well as their relatives, and also individuals who helped expose the abuses and bring them to an end.

Unfortunately, this book is marred by an inaccurate premise. Contrary to the book's title, most of the experiments described were not done on children, and a significant number long predated the Cold War of the 1950s and 1960s, dating back to the early 20th century. Likewise, the authors fill the gaps in their documentation with unsubstantiated claims and speculation. In these respects, the book is misleading and does a disservice to its subject -- it opts for sensationalism when a cold recitation of carefully documented facts would have yielded a more powerful criticism. Further, it falsely attributes political motives to the medical experimentation by implying they related somehow to competition with the Soviet Union. For example, repeated allusions are made to "radiation experiments" as if they relate to nuclear weapons. In fact, mildly radioactive molecules were routinely used in nutritional and hormonal studies because they can be tracked through the body. Properly used, they are deemed safe, and are still in use. Overall, such flaws make the book's approach rather heavy- handed.

A further issue to consider is why such experimentation was once done, and why it is so forbidden today. Nowadays, any study involving humans must meet strict legal standards, be approved by funding agencies, and be passed by strict university and hospital review panels set up to protect patient welfare. (Getting such a study approved commonly takes months, and in competition with other proposals, acquisition of funding may take years). In contrast, back in the 1950s and 1960s, such standards had not been established, and procedures were left to the discretion of physicians and medical institutions.

Given this situation, a nuanced approach would recognize that morality evolves: procedures that were accepted in the early 20th century and even in the 1950s (on the grounds that even the disabled should be contributing in their own way to society) are deemed illegal and unacceptable today. Thus, it is relevant to consider why and how our standards evolved such that we can look back with such disapproval on past practices. Judging the past by the standards of the present is an easy and cheap way to feel enlightened and morally superior.

Nevertheless, this book implicitly (if unintentionally) offers a powerful counter argument to this perspective. The fact is that medical researchers often conducted their work secretly, misleading both "patients" and their families, because they suspected that the subjects and their relatives would not assent to their being used in such experiments. Surely by the 1960s, such researchers had to be fully aware of the controversial and morally questionable nature of their practices.

I do recommend this book, as a work that exposes disturbing practices of past decades. Hopefully, it will spawn further, more sober, examination of the abuses done in the name of medical research, perpetrated by investigators who valued research and their careers more than the vulnerable and powerless human subjects placed in their charge. ( )
4 vote danielx | Mar 21, 2014 |
This review was written for LibraryThing Early Reviewers.
"Against Their Will" documents the shocking use of institutionalized American children and adults in medical experiments. As such, the book presents evidence of a largely untold, dark side of the recent history of medicine, and raises serious ethical questions. That such experimentation could never occur today is because of strict ethical, legal, and institutional rules set up to prevent anything like this sort of abuse from ever happening again.

Despite its merits, the book has its flaws. First, notwithstanding the book's subtitle, most of the experimentation in question had nothing whatsoever to do with "the Cold War". While highly unethical by today's standards, the experimentation was done with the goal of developing vaccines and procedures to improve healthcare for people in general. Thus the goals were medical, not political. What's more, much of the experimentation that is described long predates the 1950s through 1970s, so even the historical framework is mistakenly implied. Second, the book tends towards sensationalism. Third, too much of the book relies on anecdotes and opinion. Thus claims and accusations are offered without actual evidence, to a degree that can only be labeled as irresponsible.

This book had the prospect of being a powerful expose, but the authors sacrifice objectivity and the hard work of careful documentation for the sake of moral outrage. The issues are serious, and deserve a more careful exploration. Nonetheless, "Against Their Will" brings the issues to the fore. ( )
3 vote rybie2 | Feb 9, 2014 |
This review was written for LibraryThing Early Reviewers.
Have some knowledge, and concern about some mysterious uncurable/untreatable diseases (polycystic kidneys and sarcodosis) I was intrigued by the title. I am sure this would be a good first time read on the subject of the primitive methods used in the name of science and discovery. Yes, as one reviewer noted it did "triggered" me a bit, but it should be a recommended read for future MDs and Phd who dive into research and development so they may have conscienceness triggered to develop higher ethics than their research ancestors. I am reading a vintage book by Jaffe, Bernard entitled Crucibles-The Lives and Achievemejts of the Great Chemist which reveals the egotism, the religious influence, the inquisitiveness of these explorers of God's creation. As of yet I have not come across one who used a human guinea pig...I highly recommend for a first slow pace read for medical students or anyone contemplating the science/medical arena.
  pre20cenbooks | Feb 5, 2014 |
This review was written for LibraryThing Early Reviewers.
This book tries to emulate other books on wrongful medical experimentation on the human species --- children in this case. The book is well footnoted. But the subject cannot be adequately covered in a mere 219 pages. A structure such as the 480 page book by Eileen Welsome's "Plutonium Files" (a 489 page treatment) would have been more informative and revealing. ( )
  octafoil40 | Dec 29, 2013 |
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"The sad history of young children, especially institutionalized children, being used as cheap and available test subjects - the raw material for experimentation - started long before the atomic age and went well beyond exposure to radioactive isotopes. Experimental vaccines for hepatitis, measles, polio and other diseases, exploratory therapeutic procedures such as electroshock and lobotomy, and untested pharmaceuticals such as curare and thorazine were all tested on young children in hospitals, orphanages, and mental asylums as if they were some widely accepted intermediary step between chimpanzees and humans. Occasionally, children supplanted the chimps. Bereft of legal status or protectors, institutionalized children were often the test subjects of choice for medical researchers hoping to discover a new vaccine, prove a new theory, or publish an article in a respected medical journal. Many took advantage of the opportunity. One would be hard-pressed to identify a researcher whose professional career was cut short because he incorporated week-old infants, ward-bound juvenile epileptics, or the profoundly retarded in his experiments. In short, involuntary, non-therapeutic, and dangerous experiments on children were far from an unusual or dishonorable endeavor during the last century"--

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