Tag Archives: medical ethics

X-raying Orphans: Fictionalizing Medical History in Orphan #8

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Guest author Kim van Alkemade has a doctorate in English from the University of Wisconsin-Milwaukee and is a professor at Shippensburg University in Pennsylvania. Orphan #8 is her first novel.

“They weren’t treatments,” I interrupted, surprising both of us with my vehemence. “It was an experiment. I was experimented on, not treated.”1

The premise of my historical novel Orphan #8 is this: in 1919, four-year-old Rachel Rabinowitz is placed in a Jewish orphanage in New York where the fictional Dr. Mildred Solomon is conducting X-ray research using the children as her subjects. Years later, Rachel, who has become a nurse, is given the opportunity for a reckoning with her past when old Dr. Solomon becomes her patient. While the novel is fiction, medical research on children in orphanages was a common practice, and a child like Rachel Rabinowitz would not have been unique at the time. Not only were children “used as subjects in a number of experiments involving X-rays”2 but a “preponderance of the children subjects were poor, institutionalized, mentally ill, physically disabled, or chronically ill.”3

A dormitory in the Hebrew Infant Asylum. From Annual Report 1914 Hebrew Infant Asylum of New York.

A dormitory in the Hebrew Infant Asylum. From Annual Report 1914 Hebrew Infant Asylum of New York.

The inspiration for the novel arose from research I was doing about Jewish orphanages for a family history project. In the archives of the American Jewish Historical Society, I read that Dr. Elsie Fox, a graduate of Cornell Medical School, X-rayed a group of eight children at the Home for Hebrew Infants in New York City, resulting in persistent alopecia. Upon the transfer of these children to the Hebrew Orphan Asylum in October 1919, the Board of Trustees discussed what to do in the “matter of the children received with bald heads.” On November 9, 1919, they entered into their meeting minutes a letter from the Home for Hebrew Infants “assuming responsibility… for the condition of these children.” The letter refers to an enclosure of data about the eight children, as well as a letter from Dr. Fox detailing her X-ray treatments. Unfortunately, the enclosures were not entered into the minutes. On May 16, 1920, the matter was put to rest when the Trustees “ordered that children afflicted with alopecia should have wigs made, and be boarded out, if possible.”4

Detail of the Meeting Minutes of the Board of Trustees of the Hebrew Orphan Asylum. Courtesy of the American Jewish Historical Society.

Detail of the Meeting Minutes of the Board of Trustees of the Hebrew Orphan Asylum. Courtesy of the American Jewish Historical Society.

Dr. Solomon blinked, confused. She stared at me as if trying to focus on print too small to read. “You were one of my subjects?”

I nodded, imagining for a moment that she recognized me: her brave, good girl. She lifted her hand to my face, bent my head back to expose the underside of my chin. Her thumbnail circled the scars there, tracing the dimes of shiny skin. Then she placed her fingers against my drawn eyebrows and wiped away the pencil. Finally, she reached up to my hairline and pushed along the brow. My wig shifted. She pulled her hand back in surprise. It wasn’t tenderness I saw in her face, not even regret. Fear, maybe? No, not even that.

“So the alopecia was never resolved? I was curious about that, always meant to follow up. What number were you?”

I adjusted my wig. “Number eight.”5

Though I invented the character of Dr. Mildred Solomon before I discovered more about Dr. Elsie Fox, it turned out the real person was similar to my fictional character. Elsie Fox was born in Vienna, Austria, in 1885. When she graduated from Cornell with her medical degree in 1911, she was one of 8 women in a class of 53 graduates. She became a fellow of the New York Academy of Medicine in 1916, and was a member of the Bronx Roentgen Ray Society.6 A published medical researcher, she went on to become the Director of the Harvey School for the Training of Analytical and X-ray Technicians in Manhattan and was a Roentgenologist at City Hospital. She was 58 when she died in June 1943.

From Hess, Alfred F., M. D. Scurvy, past and present. Philadelphia, J.B. Lippincott Company, 1920.

From Hess, Alfred F., M. D. Scurvy, past and present. Philadelphia, J.B. Lippincott Company, 1920.

In my novel, I paired the fictional Dr. Solomon with a character closely based on a real orphanage pediatrician of the time. Dr. Alfred F. Hess was attending physician to the Hebrew Infant Asylum and a renowned researcher into childhood nutritional diseases. He was the innovator of an infant isolation ward at the orphanage in which babies were kept in separate glassed-in rooms to avoid the spread of disease. Hess is well-known for a quote in which he extolled the advantages of conducting research on “institutional children” who provided the advantage of belonging to “the same stratum of society,” being “reared within the same walls,” and having the “same daily routine, including similar food and an equal amount of outdoor life.” He concluded: “These are some of the conditions which are insisted on in considering the course of experimental infection among laboratory animals, but which can rarely be controlled in a study in man.”7

Glassed-in babies, from Annual Report 1914 Hebrew Infant Asylum of New York.

Glassed-in babies, from Annual Report 1914 Hebrew Infant Asylum of New York.

Dr. Hess’s approach to the study of scurvy, which involved inducing the condition in children and then experimenting with various cures, was controversial even in his lifetime. In 1921, Hess was criticized “for using ‘orphans as guinea pigs’ in studies of the dietary factors in rickets and scurvy” by “withholding orange juice from institutionalized infants until they developed the characteristic small hemorrhages associated with the disease.”8

From Hess, Alfred F., M. D. Scurvy, past and present. Philadelphia, J.B. Lippincott Company, 1920.

From Hess, Alfred F., M. D. Scurvy, past and present. Philadelphia, J.B. Lippincott Company, 1920.

“My name is Rachel, I’ve told you that. But you don’t care, do you? Even now, I’m just a number to you. All the children at the Infant Home were nothing more than numbers to you.” I thought of the tattoo on Mr. Mendelsohn’s frail arm. “Just numbers, like in the concentration camps.”

She gripped the sheets. “How can you say such a thing? You were in an orphanage, not some concentration camp. They took care of you, fed you, clothed you. Jewish charities support the best orphanages, the best hospitals. Even this Home is as good as it gets for old people like me. You have no right to even mention the camps.”

Of course the orphanage wasn’t a death camp, I knew that, but I wasn’t backing down. “You came into a place where we were powerless, you gave us numbers, subjected us to experiments in the name of science. How is that different?”9

When I would tell people about the medical experimentation on children depicted in my novel, they would often say it sounded like something the Nazis would do. As first I was impatient with the comparison: these experiments were conducted well before the rise Hitler in Germany, and the doctors conducting the research, many of them Jewish themselves, intended to advance medicine for the benefit of all children. Yet, as I thought about it from the point of view of one of the child subjects, I wondered if that distinction would matter.

It is easy for contemporary readers to conflate all medical experimentation on children with the atrocities of the Holocaust, but even after “the world was outraged at the murders carried out in the name of science by Nazi physicians during World War II,”10 some American doctors continued to use orphans, prisoners, and other disenfranchised populations in medical research without their consent. In my novel Orphan #8, I bring this aspect of medical history to general readers through the use of narrative and story. Medical students and physicians may also find that fiction provides an opportunity to explore these complex issues with empathy and imagination and to engage a wider community in the discussion of medical ethics.

References

1. van Alkemade, Kim. Orphan #8 (New York: William Morrow, 2015), 232.

2. Lederer, Susan E. and Michael A. Grodin. “Historical Overview: Pediatric Experimentation.” In Grodin, Michael A. and Leonard H. Glantz. Children as Research Subjects: Science, Ethics, and Law (New York: Oxford University Press, 1994), 10.

3. Lederer and Grodin, 19-20.

4. Executive Committee Minutes 1909-1930. Hebrew Orphan Asylum Collection, Archives of the American Jewish Historical Society, Center for Jewish History, 15 West 16th Street, New York, NY.

5. van Alkemade, 173.

6. The Bulletin of the New York Academy of Medicine. September 19 (1943): 676.

7. Lederer, Susan E. “Orphans as Guinea Pigs: American Children and Medical Experimenters, 1890-1930.” In Roger Cooter, ed. In The Name of the Child: Health and Welfare, 1880-1940 (New York: Routledge, 1992), 115.

8. Lederer and Grodin, 13.

9. van Alkemade, 282.

10. Lederer and Grodin, 16.

The Talented Dr. Knox

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Lisa Rosner, PhD, author of today’s guest blog, will present “The True and Horrid Story of the Burke and Hare Anatomy Murders” at our October 18th festival, Art, Anatomy, and the Body: Vesalius 500.

Engraving of Dr. Robert Knox. From our online collection The Resurrectionists.

Engraving of Dr. Robert Knox. From our online collection The Resurrectionists.

Dr. Robert Knox, the anatomist whose cadaver purchases kept William Burke and William Hare in the murder business, has always been an enigma. Born in Edinburgh, Scotland, he served in the army and studied in Paris before returning home to set up a private anatomical school. He taught hundreds of students, lecturing twice a day in addition to holding separate dissection classes. He was curator of the surgical museum, wrote articles on human and comparative anatomy for scientific societies, and was in the process of seeing several books on anatomy through publication. His supporters claimed he knew nothing about the murders; his detractors argued that he simply turned his blind eye—for he had lost an eye to smallpox as a child.

Plate II in Knox's Man: His Structure and Physiology, shown flat and with lifted parts. Click to enlarge.

Plate II in Knox’s Man: His Structure and Physiology, shown flat and with lifted parts. Click to enlarge.

What we can see, using the extensive collection of Robert Knox materials in the New York Academy of Medicine Library, is just how talented an anatomist Robert Knox was. His edition of Hippolyte Cloquet’s A System of Anatomy is more than just a translation: it is instead a critical analysis of contemporary anatomical knowledge, enriched by examples from Knox’s own research and teaching. The same is true of his edition of Friedrich Tiedemann’s The Plates of the Human Arteries, prepared with two of his students, Thomas Wharton Jones and Edward Mitchell. The catalogue he prepared for the anatomical and pathological museum of the Royal College of Surgeons of Edinburgh is filled with his detailed insights: on anomalies of the biceps flexor cubiti, on the precise position relative of a fatal brain tumor, and on popliteal aneurism. Knox discussed the implications of these, and many more of his anatomical and surgical observations, in several series of articles for the London Medical Gazette. We can follow his teaching methods in The Edinburgh Dissector, the handbook he wrote for the use of his dissecting classes. “Nobody could ever say that he gave a dry lecture, or one that was not specially instructive,” reported his former student, Henry Lonsdale. Even in the midst of the detailed description that makes up most of the Edinburgh Dissector, Knox’s love of his subject shines through, as in his description of the bones of the foot, which “when well formed yields in beauty and perfection to no part in the human body.”

Could such a passionate observer of all subjects anatomical really have missed the fact that sixteen of his own “subjects” had been murdered? Contemporaries from Home Secretary Sir Robert Peel (founder of the London Metropolitan Police) to the Edinburgh evening papers refused to believe it and called for wider investigation. On the advice of legal counsel, Knox refused to answer any questions—just as he had refused to ask any, his professional rivals muttered darkly, when presented with Burke’s and Hare’s murder victims. There was no real case against him, and there are no records of any deliberations by the prosecuting attorneys. We will probably never know what Knox knew or when he knew it.

"Execution of the notorious William Burke the murderer, who supplied Dr. Knox with subjects." Engraved print in The Resurrectionists collection. Click to enlarge.

“Execution of the notorious William Burke the murderer, who supplied Dr. Knox with subjects.” Engraved print in The Resurrectionists collection. Click to enlarge.

The anatomical career of the talented Dr. Knox survived the Burke and Hare scandal, but it did not long survive the change in medical teaching and practices that followed it. He had a second career as a public teacher and lecturer: his books A Manual of Artistic Anatomy and Great Artists and Great Anatomists: A Biographical and Philosophical Study sold very well. But he never achieved the academic position he had striven for, and his research agenda, like his sixteen most famous subjects, died at the hands of Burke and Hare.

For more on Robert Knox and the Burke and Hare murders, visit our online collection, The Resurrectionists.

Patient Photographs and Medical Collecting

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Heidi Knoblauch, the author of today’s guest post, is our 2014–2015 Klemperer Research Fellow. She is a Ph.D. candidate in the History of Science and Medicine Department at Yale University.

Tucked away in the New York Academy of Medicine’s special collections is a small green metal box, simply labeled “daguerreotypes.” The box contains twelve photographs and one painting. A few are images of doctors, but most are of patients.

The small green metal box, simply labeled “daguerreotypes.” Photo by Heidi Knoblauch.

The small green metal box, simply labeled “daguerreotypes.” Click to enlarge. Photo by Heidi Knoblauch.

You would not necessarily know these photographs were of patients unless you looked closely for a misshapen nose, outline of an excision, or nondescript facial scars. The subjects’ posing more closely resembles 19th-century photographic portraits circulated between family members than the poses we currently associate with a clinical image. These poses are accentuated by the fact that most of the photographs are housed in hinged frames with gold matting.

These photographs straddle the line between the medical and the personal that was becoming more defined during the 19th century. They blend intentional subjectivity with a new technology used to make what contemporary physicians described as a “more perfect record.”

During the 19th century, medical men collected photographs of patients and pasted them into personal scrapbooks, case records, and put them on display. These personal collections of notable cases represent not only the use of photographic technologies in consultation, but also the continuation of an engrained practice of collecting that began long before the advent of the daguerreotype. Like all archives and collections, they highlight the inclusion of things meant to be remembered and exclusion of things meant to be forgotten.

Another view of the special collection. Photo by Heidi Knoblauch.

Another view of the special collection. Click to enlarge. Photo by Heidi Knoblauch.

Tracking the social practices associated with amassing medical collections is crucial for understanding this small box of photographs, almost all of which lack identifying information. These photographs have the potential to help us sketch out the formation of communities of collecting and exchange during the middle of the 19th century and to think about how doctors interpreted their relationships with their patients.

The famed surgeon Valentine Mott was one of many physicians who collected surgical and pathological specimens—including the images in the small green box. His museum, which was located at the University Medical College, was composed mainly of pathological specimens from surgical operations, collected in part from his students, who submitted dissections through an annual competition. Like many of his contemporaries, Mott thought collecting would advance the surgical art. In 1858, he declared that his collection was “believed to be the largest that any American surgeon had the occasion to form.”

Mott also sought photographs from his students. Although most of the examples in the small box are unmarked, one of Mott’s students, Edward Archelaus Flewellen, labeled a photograph he sent Mott: “A.P Jackson, Thomaston, Georgia. A supposed case of subcutaneous aneurism by anastomosis. Referred to Dr. Mott by E.A. Flewellen.”

In 1856, Flewellen sent a letter with this daguerreotype to his instructor to obtain a consultation for his patient. Flewellen told Mott that he “did this reluctantly” because he was sure that Mott was “taxed by frequent consultation by many of the thousands of students who have had the pleasure and benefits of [his] instruction.” But, Flewellen added, he believed that Mott would find this an interesting and rare case.

Dr. Edward Archelaus Flewellen's note and photograph, sent to Dr. Valentine Mott. Photo by Heidi Knoblauch.

The note and daguerrotype Dr. Flewellen sent to Dr. Mott. Click to enlarge. Photo by Heidi Knoblauch.

Flewellen’s patient, A.P. Jackson, was a 33-year-old mechanic from Georgia who developed a tumor over his right eye when he was very young. Flewellen described the case in great detail, saying that he had watched the tumor grow for the past five years. Flewellen asked Mott what surgical treatment he would recommend to “rid this poor young man of this hideous deformity” and then promised to send Mott another daguerreotype of Jackson if the surgery was successful so Mott could contrast the before and after photographs. There is no record of Mott replying to Flewellen.

Patient photographs began to represent a new type of scientific aesthetic practice, aligned with graphs and charts, during the 1870s. Patients contributed photographs to their case records during the 19th century, but by the 1890s patients became less willing to actively participate in creating a photographic record of their disease. Today, many patients—especially in genetics, plastic surgery, and dermatology departments—have their photographs taken by a physician or technician (with a digital camera of course) to include in their electronic medical record. Yet employing a professional photographer to take a photograph with the express purpose of mailing it to a physician would seem odd to most people today.

Concerns about privacy surfaced at the end of the 19th century, which changed the way patients thought about photography in the clinic. Standards for clinical photography emerged during the 1920s and, because of this, we would find it strange to have a clinical photograph taken with a piece of bone or a bullet. Photographs are now more sterilized than they were in the 19th century and, unlike in the case of Flewellen, patients are rarely told to dress up before being photographed. The culture of photography has changed and, with it, the way physicians use photographs has shifted.