The Experiment Is on Us
Author at age four
Bergonic chair | Otis Historical Archives National Museum
of Health and Medicine | CC BY
Tuskegee Experiment: Grinnell College
Photo credit: naturalhomeschooling.com
Author at age 16
For half of her childhood, Beret E. Strong was experimented on medically against her will by a famous endocrinologist who gave thank-you bottles of whiskey to mortuary directors who supplied him with pituitary glands harvested from corpses. The glands were used to engineer human growth. The damage his experiments did to Strong’s body has been revealed only in the course of time. The Experiment Is on Us weaves her story into a carefully researched exploration of the history and contemporary landscape of medical experimentation in our country, told by a patient for fellow patients.
Synopsis
For half of her childhood, Beret E. Strong was experimented on medically against her will by a famous endocrinologist who gave thank-you bottles of whisky to mortuary directors who supplied him with pituitary glands harvested from corpses. The glands were used to engineer human growth. The damage his experiments did to Strong’s body has been revealed only in the course of time. The Experiment Is on Us weaves her story into a carefully researched exploration of the history and contemporary landscape of medical experimentation in our country, told by a patient for fellow patients.
If you ask Americans about unethical medical experiments, they may recall two famous episodes: the Tuskegee syphilis experiments on African-Americans, and the horrors committed by doctors in the Nazi concentration camps. But there are many other stories. Physicians, universities, the federal government, and corporations experimented on vulnerable people with impunity until the 1970s – especially children, prisoners, African-Americans, soldiers, the institutionalized, and sometimes even entire unwitting cities. Since then, the vast experimental machinery of our country has only accelerated. In this eye-opening read, we learn how medicine depends on experimentation to advance and continues to put us at risk. The Experiment Is on Us presents human stories as it informs us about the inner workings of the clinical trial industry, ethical standards, racial and gender equity, and the role of money in driving the great experiment that is American medicine. The book is a wake-up call about what we need to know to keep ourselves safe as we navigate our remarkable but flawed health care system.
Chapter Outline
Overture "Thick Green Syrup"
This is the beginning of the author’s experience of being experimented upon against her will as a child. The scene is set in a small laboratory in San Francisco in 1970. She is forced to drink a tall glass of bright green glucose syrup before a five-hour series of blood draws.
Chapter 1 "My Story, Our Story"
This chapter illuminates the crucial role experimentation plays in advancing medical knowledge while revealing that the American medical system has not adequately protected patients from harm. It also expands on the author's personal story. The interludes that appear between chapters are the continuation of that story, revealing how adverse effects of the experimentation unfurled over the decades that followed.
Chapters 2 and 3 “The Hall of Shame”
“The Hall of Shame” provides a selected history of medical experiments that were problematic, often because of lack of informed consent, but also because they damaged people who were experimented upon. The chapters illuminate our tradition of medical experimentation on vulnerable groups, especially from the mid-19th century to the 1970s, when ethical standards finally began to change.
Interlude "The Machine with Black Tentacles"
The author is still being experimented on in San Francisco. On this day, she breathes into a machine with black tentacles and is medically sexually abused.
Chapter 4 “Medical Ethics and Human Subjects Protections”
This chapter traces the evolution of ethical doctrines to protect human subjects. It begins with the Hippocratic Oath, but it’s the post-World War II era—catalyzed by the Nuremberg trials in the wake of the Nazi experiments—where we see a sustained effort to provide meaningful protections for people who participate in clinical trials and other experiments. Readers learn how having an ethical doctrine in place means very little if actual medical practitioners and organizations don’t choose to live by it.
Interlude "The Man Behind the Desk"
The author, still a child, meets the man who is orchestrating the experiment on her. He sits behind a large desk, ignoring her and informing her mother of his instructions: hormonal drugs and a strange diet that will humiliate and haunt her. It is a portrait of the absence of consent, the erasure of the patient’s right to speak on her own behalf.
Chapter 5 “Informed Consent”
This chapter explores the concept and practice of informed consent. True informed consent is a high standard, and though efforts are made to meet it, it has proven elusive, in part because properly seeking informed consent can be a resource- and time-consuming process. Many patients and medical practitioners shortchange the process.
Interlude “Pregnant Mare Urine”
Hormonal treatment has made the author unable to gain even the bare minimum body fat needed to catalyze puberty. The author is fifteen and still pre-pubescent. The doctor finally looks her in the eye and asks if she minds lagging behind her peers. She lies because she is afraid of what he will do next. He does it anyway and prescribes high doses of estrogenic drugs that violently induce puberty.
Chapter 6 “Clinical Research”
This chapter explains clinical trials and directs the reader to information about trials past and present. It shows how the medical and pharmaceutical research system works, what we need to know if we are participating in it, and what can happen to trial “volunteers” who perform this vital service on behalf of the public.
Interlude "My First Speculum"
The author discovers that her experience as an experimental subject has little to do with standards of care in the outside world. Her new laboratory is the student health center of her university. As a freshman, she learns that gynecology – pap tests – do not have to be an experience of physical torture. She begins to see her childhood experience with new eyes, and to see herself as the guinea pig she has been.
Chapter 7 “Guinea-Pigging”
Guinea-pigging is the problematic practice of being an experimental subject as a way to earn a living. This chapter explores clinical trial mills, being an experimental subject in the gig economy, and how data gleaned from guinea pigs may be flawed. An experiment by a major university advertised as being about the “Potential Healthy Benefits of Dietary Supplements on Cardiovascular Health” is revealed as an experiment involving a substance deemed by the National Institutes of Health Drug Information Portal to be "toxic, mutagenic, and carcinogenic.“
Interlude “The Open Wound”
The author’s mother nearly dies from a gastric hemorrhage just after the author turns eighteen. The author spends weeks haunting the ICU and, as the only family member doing the hospital vigil, trying to advocate for her mother’s care. The surgeon is abusive to her mother and inappropriate with her. He embodies how the worst men in medicine sometimes treat women. Physically devastated, her mother survives. The author, traumatized, had thought she wants to study medicine but now turns away.
Chapter 8 “Inequality, Sex, and Race”
Medical research has focused too much on white men, leading to a paucity of research about other racial/ethnic groups, women, and children. There is a dearth of research on African-Americans and a failure of scientific imagination and a stubborn sexism in FDA approval of drugs and devices related to women’s health. An example is the “morcellator”, a medical device that grinds up women’s uterine fibroid tumors and has in some women spewed cancerous cells around the abdominal cavity, with fatal results.
Interlude “Take Your Pain”
Now in her early thirties, the author is planning to give birth in a small hospital on a Micronesian island. Just before she travels 6,000 miles across the Pacific to the island of Saipan, she learns her unborn baby girl has an abnormal umbilical cord. The obstetrician refuses to give her information about what this might mean. In the delivery room in Micronesia, she is induced with Pitocin. There are no epidurals available. The Fijian midwife intones over and over, “Take your pain.”
Chapter 9 “The Ethics of Money in Medicine”
This chapter is about the problematic role of money in medical research and care, including ways that lead to broadly negative health outcomes. Money is driving the proverbial train when it comes to problematic practices in clinical research and some aspects of treatment. We have to follow the money in order to understand how it affects clinical research, new medication and devices, and the medical care we receive.
Interlude “Fatten Up”
The author, still in Micronesia, is failing to get pregnant with her second child. Her lack of body fat is a problem. The obstetrician recommends a high-calorie diet. What the author doesn’t realize is that she is in a free fall into premature ovarian failure due to the years of heavy hormonal drugs she was given starting when she was nine years old. Nonetheless, she manages to have a second baby.
Chapter 10 “A Medical Ethics of the Future”
This chapter is about good news, including the wonderful keepers of medical ethics—the organizations, doctor-writers, and advocates working to make medicine be its best ethical self, now and in the future. It’s also a vision for what the future might be like, which will in large measure depend on how health care is accessed, provided, and financed in the U.S.
Interlude “Premature Wizened Crone"
Still in her thirties, the author is shocked to find she is menopausal. Her bones begin to thin, her skin to wrinkle. Then her bones break and she ends up having surgery to repair the most devastating of the breaks. It is now time to look back at what has become of her body since the medical experiment began decades earlier, to reckon with what happened, and to choose to write this book.
Chapter 11 “The Experiment Is on Us”
“The Experiment Is on Us,” is a reminder that we have to remain vigilant because unethical experiments, while much rarer than before, are still being performed and can affect the unwitting public, especially those of us who end up in an ambulance, an emergency room, a surgical theater, or as patient in hospital wards. The chapter looks at ominous health threats of the future and includes revelations about recent clinical research that has put patients at risk, often without proper informed consent.
Interlude "Surprising Gifts"
Adversity often brings with it some sort of special gift – of awareness, community, appreciation. "Surprising Gifts" is the story of the gifts being an unwilling experimental subject gave to the author.
Afterward
This is a brief denouement about role of experimentation in our medical system, its potential benefits and risks, and how we can use the knowledge for our own good and as a means to improve the care system of which we are all a part.
Excerpts
Author, age 12
Tuskegee Experiment: Grinnell College
Photo credit: naturalhomeschooling.com
From Chapter One
Early one morning in 1970, at the corner of Hyde and Bush streets in San Francisco, my mother, sister, and I walk into the tiny elevator of an old brick building and ride to the second floor. The door slides open to show a small waiting room with high ceilings and hard red leather furniture. A woman in a white hat slides her glass window open for a moment and told us to take a seat. I have no idea why we are there, but I have begun to record this scene in my mind, and all the scenes to follow.
A technician calls my name and I am taken to a small laboratory. It’s an ugly place, with institutional linoleum tiles on the floor, bottles of solutions on the shelves, Bunsen burners, and hard surfaces. She hands me a little paper cup and tells me to provide a urine sample, which I’ve never done before. I am so confused I start to unbutton my jumper right there. She steers me to a restroom and explains about urine samples. Now I’m embarrassed. There is a little cabinet in the bathroom where I leave the sample. Back in the lab, the woman in the white coat ties a rubber tourniquet around my upper arm and begins to palpate the vein near the crook of my arm. She gets out a big glass syringe and sticks a fat needle in my arm—and misses the vein. She pierces my skin again—and misses. It’s a biting pain I haven’t felt before. Then she makes a joke about my “crocodile tears,” which are falling silently. I am a skinny girl and she and other nurses after her say I have small veins—it is, essentially, my fault that I am suffering. The nurse rummages with the needle in my flesh in search of a vein.
After the first successful blood draw, I am given a glass of thick, bright green liquid to drink. It is horribly sweet and medicinal—a big dose of highly concentrated glucose. Someone finally explains what they are going to do to me: a 5-hour glucose tolerance test, which requires seven blood draws and seven urine samples over the course of those hours. I haven’t been allowed to eat anything since dinner the previous night. My mother, who has been through this herself, does not prepare me. The glucose makes me feel awful. First, my blood sugar shoots up and then, a couple of hours later, goes into a free fall. The doctor wants to find out how high it will go, and how low. Will I merit a diagnosis of hypoglycemia (low blood sugar) like my mother? My sister is with me, undergoing the same horrible battery of tests. She is nearly eight years old. We go through each blood draw in synchrony, but as the oldest, I go first. We are both in shock today….
From Chapter Two
The twentieth century witnessed a dramatic expansion of medical experiments in America, only one of which was the infamous Tuskegee study where unsuspecting African-American men were intentionally infected with syphilis in the early 1930s and were left, without medical treatment, as they and their wives and children suffered the ravages of the disease for the next four decades. This was a natural outgrowth of the increasing professionalization of American medicine and the rapid evolution of technology available for its toolkit. Researchers often used vulnerable groups of people as their research subjects.
I start with children because it’s hard to think of anyone more vulnerable. Through much of the twentieth century, federal and state governments were active in experimenting on children. Hospitals, universities, and private industry also joined in. It was pretty much of a free-for-all, especially in regard to the most vulnerable of children—those who were institutionalized because of disability, illness, or poverty, or who had no family able or willing to care for them. In 1913, children in various hospitals in the U.S. were inoculated with syphilis. Others had tuberculosis bacilli put in their eyes and some went blind as a result.
From 1946–1953, the Atomic Energy Commission sponsored a study that was conducted on children at the Fernald School in Massachusetts. M.I.T. carried out the study, which was also partly funded by the National Institutes of Health. Kids who had joined the school’s science club in search of some fun in their bleak institutionalized lives were fed Quaker Oats cereal for breakfast laced with radioactive tracers. The Fernald School referred to some of the children in its care as “morons.” Some had developmental disabilities and some did not. The reason for the study is startling: Quaker Oats wanted to prove that it was nutritionally equal or superior to Cream of Wheat. Specifically, it hoped to prove that its cereal was more effective at providing dietary iron and calcium. The superintendent of the school knew the boys would be fed radioactive foods, but the letter passed out to parents said something else: “We are considering the selection of a group of our brighter patients, including your son, to receive a special diet rich in” iron and vitamins. The Boston Globe reported that the radioactive foods were the equivalent of fifty chest x-rays, and this was at a time when x-rays contained more radiation than they do now.
The boys and their families did not know about the radiation, of course. One of them, Fred Boyce, was shocked to learn on his car radio in 1994 about the study. The media reported that he yelled, “That can’t be right! That’s me!” In a Senate hearing about the study, participant Charles Dyer recalled that he was lured into the study with the promise of a Mickey Mouse watch. The researchers “made me feel special,” he testified.
The Science Club was hated by some of the children. Gordon Shattuck thought it sounded great at first, but he didn’t like being forced to live in a segregated housing unit and having blood drawn every morning before breakfast. He also reported that they made “us piss and crap in glass jars while nurses watched us. I really hated it.” He tried to quit the program but was told he could not drop out. The staff retaliated by putting him in Ward 22, a building with special punishment cells in its basement. The Fernald kids referred to it as “the jail.” Shattuck said he was isolated in one of the cells, given only bread and water and a “can to piss in” and observed through a tiny window. He lasted eight days until he succumbed to the pressure, which included a bribe: a trip out of Fernald to see a baseball game. Quaker Oats was delighted with the outcome of the study and used the claim that its cereal provided plenty of dietary iron in advertising for years to come….
Background photo credit:
Benoît Pecheux , in Giovanni Aldini, Essai théorique et expérimental sur le galvanisme, 1804. | CC BY