Unformatted text preview: CONTENTS itle Page Dedication pigraph NTRODUCTION: The American Janus of Medicine and Race PART 1 A Troubling Tradition Chapter 1 SOUTHERN DISCOMFORT: Medical Exploitation on the Plantation
Chapter 2 PROFITABLE WONDERS: Antebellum Medical Experimentation with Slaves and Freedmen
Chapter 3 CIRCUS AFRICANUS: The Popular Display of Black Bodies
Chapter 4 THE SURGICAL THEATER: Black Bodies in the Antebellum Clinic
Chapter 5 THE RESTLESS DEAD: Anatomical Dissection and Display
Chapter 6 DIAGNOSIS: FREEDOM: The Civil War, Emancipation, and Fin de Siècle Medical Research
Chapter 7 “A NOTORIOUSLY SYPHILIS-SOAKED RACE”: What Really Happened at Tuskegee? PART 2 The Usual Subjects Chapter 8 THE BLACK STORK: The Eugenic Control of African American Reproduction
Chapter 9 NUCLEAR WINTER: Radiation Experiments on African Americans
Chapter 10 CAGED SUBJECTS: Research on Black Prisoners
Chapter 11 THE CHILDREN’S CRUSADE: Research Targets Young African Americans PART 3 Race, Technology, and Medicine Chapter 12 GENETIC PERDITION: The Rise of Molecular Bias
Chapter 13 INFECTION AND INEQUITY: Illness as Crime
PHOTO INSERT Chapter 14 THE MACHINE AGE: African American Martyrs to Surgical Technology
Chapter 15 ABERRANT WARS: American Bioterrorism Targets Blacks PILOGUE: Medical Research with Blacks Today PPENDIX CKNOWLEDGMENTS OTES IBLIOGRAPHY BOUT THE AUTHOR OPYRIGHT For Ron DeBose, my husband,
with undying love and gratitude When I began working at the institute, I recalled my adolescent dream
of becoming a medical research worker. Daily I saw young…[white]
boys and girls receiving instruction in chemistry and medicine that the
average black boy or girl could never receive. When I was alone, I
wandered and poked my fingers into strange chemicals, watched
intricate machines trace red and black lines upon ruled paper. At times
I paused and stared at the walls of the rooms, at the floors, at the wide
desks at which the white doctors sat; and I realized—with a feeling that
I could never quite get used to—that I was looking at the world of
—RICHARD WRIGHT, 1944
The wrongs which we seek to condemn and punish have been so calculated, so malignant and so
devastating that civilization cannot tolerate their being ignored because it cannot survive their
—CHIEF U.S. PROSECUTOR ROBERT JACKSON, OPENING STATEMENT, NUREMBERG DOCTORS’ TRIAL, DECEMBER 9, 1946 INTRODUCTION
The American Janus of Medicine and Race
Science without conscience is the soul’s perdition.
—FRANÇOIS RABELAIS, PANTAGRUEL
On a sylvan stretch of New York’s patrician upper Fifth Avenue, just across from the New York
Academy of Medicine, a colossus in marble, august inscriptions, and a bas-relief caduceus grace a
memorial bordering Central Park. These laurels venerate the surgeon James Marion Sims, M.D., as a
selfless benefactor of women. Nor is this the only statuary erected in honor of Dr. Sims. Marble
monuments to his skill, benevolence, and humanity guard his native South Carolina’s statehouse, its
medical school, the Alabama capitol grounds, and a French hospital. In the mid-nineteenth century,
Dr. Sims dedicated his career to the care and cure of women’s disorders and opened the nation’s first
hospital for women in New York City. He attended French royalty, his Grecian visage inspired oil
portraits, and in 1875, he was elected president of the American Medical Association. Hospitals still
bear his name, including a West African hospital that utilizes the eponymous gynecological
instruments that he first invented for surgeries upon black female slaves in the 1840s.
But this benevolent image vies with the detached Marion Sims portrayed in Robert Thom’s J.
Marion Sims: Gynecologic Surgeon, an oil representation of an experimental surgery upon his
powerless slave Betsey. Sims stands aloof, arms folded, one hand holding a metroscope (the
forerunner of the speculum) as he regards the kneeling woman in a coolly evaluative medical gaze.
His tie and morning coat contrast with her simple servants dress, head rag, and bare feet.
The painting, commissioned and distributed by the Parke-Davis pharmaceutical house more than a
century after the surgeries as one of its A History of Medicine in Pictures series, takes telling liberties
with the historical facts. Thom portrays Betsey as a fully clothed, calm slave woman who kneels
complacently on a small table, hand modestly raised to her breast, before a trio of white male
physicians. Two other slave women peer around a sheet, apparently hung for modesty’s sake, in a
childlike display of curiosity. 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. Each naked, unanesthetized slave woman had to be
forcibly restrained by the other physicians through her shrieks of agony as Sims determinedly sliced,
then sutured her genitalia. The other doctors, who could, fled when they could bear the horrific scenes
no longer. It then fell to the women to restrain one another.
I wanted to reproduce Thom’s painting on the cover of this book, or at least in the text, but when I asked permission of its copyright holder, Pfizer Inc., the company insisted on reviewing the entire
manuscript of this book before making a decision. As an independent scholar I could not acquiesce to
this, and I used another cover image. When I renewed my request to use the image within the text,
Pfizer agreed to base its decision upon reading this chapter and an outline of the book.
The Pfizer executives apparently were uncomfortable with what they read, because they refused to
grant permission to reproduce this telling image or even respond to my query after I supplied the
requested chapter and outline. This act of censorship exemplifies the barriers some choose to erect in
order to veil the history of unconscionable medical research with blacks.
Betsey’s voice has been silenced by history, but as one reads Sims’s biographers and his own
memoirs, a haughty, self-absorbed researcher emerges, a man who bought black women slaves and
addicted them to morphine in order to perform dozens of exquisitely painful, distressingly intimate
vaginal surgeries. Not until he had experimented with his surgeries on Betsey and her fellow slaves
for years did Sims essay to cure white women.
Was Sims a savior or a sadist? It depends, I suppose, on the color of the women you ask. Marion
Sims epitomizes the two faces—one benign, one malevolent—of American medical research.
“Of all the forms of inequality, injustice in health is the most shocking and the most inhumane.” In
1965, Martin Luther King, Jr., spoke these words in Montgomery, Alabama, at the end of the Selma to
Montgomery march that had been attended by the black and white physicians of the Medical
Committee for Human Rights. King had invited the doctors not only to give medical succor to injured
marchers but also to witness the abuse suffered at the hands of segregationists. With these almost
unnoticed words, King ushered in a new era in civil rights, because as Delegate to Congress Donna
Christian-Christensen, M.D., chair of the Congressional Black Caucus Health Braintrust, has
declared, “Health disparities are the civil rights issue of the 21st century.” Thus Dr. King’s alarm
over racial health injustice was prescient, and were he alive today, his concern would be redoubled.
Mounting evidence of the racial health divide confronts us everywhere we look, from doubled black
infant death rates to African American life expectancies that fall years behind whites’. Infant mortality
of African Americans is twice that of whites, and black babies born in more racially segregated cities
have higher rates of mortality. The life expectancy of African Americans is as much as six years less
than that of whites.
Old measures of health not only have failed to improve significantly but have stayed the same:
some have even worsened. Mainstream newspapers and magazines often report disease in an
ethnocentric manner that shrouds its true cost among African Americans. For example, despite the
heavy emphasis on genetic ailments among blacks, fewer than 0.5 percent of black deaths—that’s less
than one death in two hundred—can be attributed to hereditary disorders such as sickle-cell anemia.
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.
Three times as many African Americans were diagnosed with diabetes in 1993 as in 1963. This rate is nearly twice that of white Americans and is sorely underestimated: The real black diabetes
rate is probably double that of whites. As with most chronic diseases, African Americans suffer more
complications, including limb loss, blindness, kidney disease, and terminal heart disease. Cancer, the
nation’s second greatest killer, is diagnosed later in blacks and carries off proportionately more
African Americans than whites. African Americans suffer the nation’s highest rate of cancer and
The distortion of African American death rates is illustrated by the common dismissal of black
women’s breast-cancer risks as “lower than white women’s.” This characterization implies that black
women are at low risk from breast cancer, but their risk is only slightly lower, because the estimated
lifetime risk of developing breast cancer is ten per one hundred for white women born in 1980, and
seven per one hundred for black women born that year. Moreover, this lower risk of developing
breast cancer is overshadowed by blacks’ much higher risk of dying from it: Eighty-six percent of
white women with breast cancer are alive five years later; only 71 percent of black women survive
that long. A black woman is 2.2 times as likely as a white woman to die of breast cancer. Black
women have been undergoing mammograms at the same rate as white women but are more likely to
receive poorer-quality screening, which may not detect a cancer in time for a cure. A black woman is
also more likely to develop her cancer before age forty, too early for recommended mammograms to
catch it, and black women are diagnosed at a more advanced stage than either Hispanic or white
breast-cancer patients. Black breast-cancer patients have a worse overall prognosis, and a worse
prognosis at each stage. Black men have the nation’s highest rates of developing and of dying from
prostate and lung cancers.
Despite its image as a disease that affects middle-aged white men, heart disease claims 50 percent
more African Americans than whites and African Americans die from heart attacks at a higher rate
than whites. African Americans are more likely to develop serious liver ailments such as hepatitis C,
the chief cause of liver transplants. They are also more likely to die from liver disease, not because
of any inherent racial susceptibility, but because blacks are less likely to receive aggressive treatment
with drugs such as interferon or lifesaving liver transplants.
Even the legion of newest illnesses—emerging disease such as HIV/AIDS and hepatitis C—kills
blacks at much higher rates than whites. AIDS, the scourge of our time, has become a disease of
people of color here and abroad: Forty-nine percent of HIV-infected Americans are African
Americans and 86 percent of children with AIDS are African American or Hispanic. Blacks are ten
times as likely to develop AIDS as whites.
Mental ailments are destroying blacks, as well: Black women suffer the highest rates of stress and
major depression in the nation and suicide rates soared 200 percent among young black men within
just twenty years.
These are dire statistics, born of complex interactions among unhealthy environments, social
pressures and limitations, lifestyle factors, and limited access to health care, including very limited
access to cutting-edge therapeutic medical research that is meant to help treat or cure a patient with a
disorder. But this dearth of therapeutic research is accompanied by a plethora of nontherapeutic research with African Americans, which is meant to investigate medical issues for the benefit of
future patients or of medical knowledge.
And this brings us to the subject of this book, which documents a peculiar type of injustice in
health: the troubled history of medical experimentation with African Americans—and the resulting
behavioral fallout that causes researchers and African Americans to view each other through
jaundiced eyes. In his 1909 preface to The Doctor’s Dilemma, George Bernard Shaw scathingly
observed, “The tragedy of illness at present is that it delivers you helplessly into the hands of a
profession which you deeply mistrust.” He could have been speaking for contemporary African
Americans, because studies and surveys repeatedly confirm that no other group as deeply mistrusts
the American medical system, especially medical research.
The problem is growing. As the Wall Street Journal observed several years back, “It hasn’t been a
good time for scientists who experiment on people—or the people they experiment on.” This is a
masterpiece of understatement, especially if you consider the recent history of medical research with
The Office for Protection from Research Risks (OPRR) has been busily investigating abuses at
more than sixty research centers, including experimentation-related deaths at premier universities,
from Columbia to California. Another important subset of human subject abuse has been scientific
fraud, wherein scientists from the University of South Carolina to MIT have also been found to have
lied through falsified data or fictitious research agendas, often in the service of research that abused
black Americans. Within recent years, the OPRR has also suspended research at such revered
universities as Alabama, Pennsylvania, Duke, Yale, and even Johns Hopkins.
Many studies enrolled only or principally African Americans, although some included a smattering
of Hispanics. Some research studies specifically excluded white subjects according to the terms of
their official protocols, the federally required plans that detail how research studies are conducted.
However, in other human medical experiments, the recruitment of blacks and the poor is a tacit
feature of the study because they recruit subjects from heavily black inner-city areas that tend to
surround American teaching hospitals. American university research centers have historically been
located in inner-city areas, and accordingly, a disproportionate number of these abuses have involved
experiments with African Americans.
These subjects were given experimental vaccines known to have unacceptably high lethality, were
enrolled in experiments without their consent or knowledge, were subjected to surreptitious surgical
and medical procedures while unconscious, injected with toxic substances, deliberately monitored
rather than treated for deadly ailments, excluded from lifesaving treatments, or secretly farmed for
sera or tissues that were used to perfect technologies such as infectious-disease tests. A few African
American medical institutions have suffered their own run-ins with federal oversight agencies
concerned about how they treated their own research subjects.
But the considerable concern raised by governmental oversight agencies has been dwarfed by the
periodic hue and cry raised in the popular press. The news media seize upon and decry new experimental abuses with regularity. Moreover, it is newspapers, not research oversight
organizations, that have been instrumental in unveiling and ending egregious abuses, from the
Tuskegee Syphilis Study in the 1970s to the 1996 jailing of poor black mothers who were unwitting
research subjects in South Carolina, to the 1998 infusion of poor black New York City boys with the
cardiotoxic drug fenfluramine.
However, newspapers and magazines have given such abuses episodic rather than analytic
treatment, expending their outrage, then falling silent until the next wave of research deaths, missing
consent forms, or unwitting subjects steals headlines. Subjects are often identified not as black but,
using coded references, as “the urban poor,” “socio-economically disadvantaged,” or “inner-city
residents.” This episodic approach treats the exploitation of black experimental subjects as isolated
events, so that even while the repeated reports buttress widespread distrust of medical research, these
stories fail to discern the stubborn and illuminating patterns characterizing the medical abuse of
In fact, the news media often fail to perceive unethical experimentation, even as they write about it.
Scientists promulgate novel drugs and technologies, such as Norplant use among adolescents and
psychosurgery for rioters, as new therapies that are necessarily extreme remedies. But despite the
“treatments” ’ untried nature and the vulnerability of their subjects, the news media often swallow
such euphemistic labels as “breakthrough” and “new therapy” whole.
Research is an utterly essential and desirable component of treatment, but its subjects must be
aware that they are participating, must be informed, must consent, and must be allowed to weigh the
possible risks and benefits. As this book will show, these conditions are only haphazardly met, or not
at all, when the subjects are African Americans. A Historical Vacuum
The experimental exploitation of African Americans is not an issue of the last decade or even the past
few decades. Dangerous, involuntary, and nontherapeutic experimentation upon African Americans
has been practiced widely and documented extensively at least since the eighteenth century.
Attempts to understand the distrust this history generates are confused and distorted because few
know its facts beyond a few oft-cited experimental outrages, notably the Tuskegee Syphilis Study.
History of medicine courses, medical museums, and even much medical scholarship leave one
unaware of the long tragic history of medical research with African Americans.
There are fine books that address more general issues in the history of African Americans in
medicine. These include The History of the Negro in Medicine, by Herbert M. Morais; Making a
Place for Ourselves, by Vanessa Northington Gamble, M.D.; and the sweepingly ambitious An
American Health Dilemma, by Drs. Linda Clayton and Michael Byrd.
Other works deal with discrete instances of African American experimental exploitation, such as James Jones’s Bad Blood and Susan M. Reverby’s Tuskegee’s Truths. The Plutonium Files, by
Eileen Welsome, meticulously details government radiation experiments in a gripping exposé Bones
in the Basement, by Robert Blakely and Judith Harrington, documents the archaeological evidence
that revealed how the Medical College of Georgia used stolen African American bodies for physician
training; Allen Hornblum’s Acres of Skin chronicles experimentation in Philadelphia’s Holmesburg
prison complex; and The Treatment, by Martha Stephens, does the same with Cincinnati’s radiation
experiments. Most of the abuses detailed in these books targeted African Americans. Killing the
Black Body, by Dorothy Roberts, includes research in its examination of the reproductive constraints
on African American women in a historical context; and Sharla M. Fett’s Working Cures and Todd L.
Savitt’s Medicine and Slavery are seminal histories of antebellum medicine that discuss research
issues, but not exclusively.
A few scholars have devoted books to research with blacks abroad, such as Clarence Lusane’s fine
Hitler’s Black Victims, Wolfgang U. Eckart’s Medizin und Kolonialimperialismus, on medical
colonialism in Germany’s African holdings, and Jan-Bart Gewald’s Herero Heroes, on the German
medical abuse o...
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