medical apartheid.pdf - CONTENTS itle Page Dedication pigraph NTRODUCTION The American Janus of Medicine and Race PART 1 A Troubling Tradition Chapter 1

medical apartheid.pdf - CONTENTS itle Page Dedication...

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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 another race. —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 being repeated. —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 cancer deaths. 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 African Americans. 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 African Americans. 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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