'Sentenced to Science'
In Acres of Skin: Human Experiments at Holmesburg Prison (Routledge), Allan M. Hornblum told the story of several decades of experiments in a Philadelphia prison in which prisoners were research subjects in studies -- some that were painful and dangerous to them -- without any meaningful informed consent. Most of the prisoners were poor and black, while the lead researcher from the University of Pennsylvania gained fame from his studies, which went on until 1974. Many experts compare the experiments Hornblum wrote about to the Tuskegee syphilis experiments.
Hornblum has a new book out about the Homesburg studies -- and this book takes a much more personal approach, focusing on the impact of the experiments on a single individual. The book is Sentenced to Science: One Black Man's Story of Imprisonment in America (Penn State University Press). Hornblum, a lecturer in geography and urban studies at Temple University, recently responded to questions about his latest book.
Q: Having written Acres of Skin, what motivated you to return to the topic -- and to do so with this approach?
A:Acres of Skin, published in 1998, received tremendous media interest. The book was featured on "Good Morning America," the "CBS Evening News," CNN, the BBC, NPR's "Fresh Air," and was written about in just about every newspaper in the country. Though the book became somewhat of an instant classic in the field and widely praised in academic and medical circles there were some less formally trained readers who found the book “too technical” and filled with “too many names and experiments” and “too difficult and complicated” to read.
Many of these readers were average urban neighborhood residents who had a deep interest in the Holmesburg experiments, but were not accustomed to serious, heavily documented academic studies. I did not want to lose them to academic jargon and a scholarly approach to the subject. Something more accessible, I realized, would reach many more people.
In addition, when I brought Edward (Yusef) Anthony into my Temple classes and on outside speaking engagements at Brown, Penn State, and other academic institutions, it was easy to see the emotional impact of his prison stories. The horrified and shocked expressions on students’ faces were quite apparent; his account of being a human guinea pig clearly resonated. I gradually recognized that if I was going to reach and educate more people about this dark chapter in American medical ethics a former inmate test subject’s personal narrative would be the way to it. To my surprise, in researching the possibility of such a book I was unable to discover another personal account of what it was like to be a test subject, much less an imprisoned human guinea pig. Sentenced To Science, according to many I have spoken to, is the first of its kind.
Q: What did you find especially compelling about Anthony's story? Do you view his experience as typical?
A: Though I brought many of the Holmesburg Prison test subjects into my classes over the years, Edward (Yusef) Anthony’s story was in many ways the most compelling and useful in tying together the many threads of the prison experimentation story. Quite nervous and not a public speaker by training, Anthony’s sobering account of being an imprisoned test subject, his subsequent distrust of doctors, and his own remarkable life story made for great theater, as well as, an educational experience for students.
Anthony was one of thousands of Philadelphians who were imprisoned test subjects during the 25 or so years clinical trials were held at Holmesburg. Young, black, poor, and a high school drop-out who was desperate to make some money while incarcerated, he did like many others – offered up a piece of his skin as a test subject. Though a majority of the subjects were no doubt white during the 1950s and early 60s, as the demographics of the prison system changes so does the racial make up of the test population. As Anthony says about the institution, “the prison was about making money.” Some made chump change, however, while others -- like the doctor who orchestrated the research and the pharmaceutical companies -- did much better.
Q: When scholars discuss research conducted before the era of informed consent and IRBs, a frequent justification is that "standards were different then." What do you make of that argument?
A: “Research ethics was different back then,” the common refrain researchers occasionally offer to defend their abuse of institutionalized populations, is hardly accurate. The Doctors Trial in Nuremberg, Germany and the subsequent crafting of the Nuremberg Code in 1947 were much publicized and discussed items in the medical community. It was American jurists who tried the Nazi doctors for their barbarous experiments and American jurists who established protective principles to ensure that research subjects would not be so cavalierly abused in future medical studies. Regrettably, many in the American medical community thumbed their nose at the Nuremberg Code. It was considered too restrictive and an impediment in gaining access to cheap and available test subjects. They rationalized that the code was designed for Nazi doctors, not ethical American doctors. The Gilded Age of American research during the Cold War may have produced profits and products, but it was certainly not the medical community’s finest hour ethically.
Q: Many social scientists have noted the lingering impact of the Tuskegee experiments and studies such as those you have recounted in discouraging black participation in medical research. How can scientists overcome those fears?
A: During the course of his presentations, it is not unusual to hear Yusef Anthony state “I no longer trust doctors. As a child I was taught by my parents to respect doctors and medical people, but I don’t any longer. They hurt me and I’m still suffering.”
Mr. Anthony’s feelings are representative of those African-Americans who participated in the Holmesburg prison medical experiments. The inmates were just raw material for scientific experimentation and doctors facilitated their use and abuse. They witnessed drug companies and men in white lab coats greatly benefit economically while those who suffered through the medical studies were left with scars and bad memories. Though Tuskegee may be the most infamous case of abuse in the African-American community, there are many other incidents that have contributed to the distrust that currently pervades the blacks in America.
To address this concern the medical community should own up to their transgressions, apologize for the worst abuses, and implement varied educational programs and policy approaches to regain that trust. Avoiding or denying troubled practices of the past will only solidify the deep distrust that currently exists.
Q: Based on your research, what do you make of the informed consent/IRB protocols today?
A: There can be little doubt that human subjects involved in medical research today are far better protected than a generation ago. Informed consent, IRBs, and other safeguards have greatly improved the research landscape, but excesses, indiscretions, conflicts of interest, and other problems still occasionally occur and can result in dire consequences. As one knowledgeable observer, Henry Beecher, stated many years ago “Doctors are dedicated to their patients. Researchers are dedicated to their protocols.” That accurate description of researchers’ central concern must be understood, not forgotten. Especially so when recommendations are offered to reopen our nation’s prison doors to researchers. When we cannot be sure that test subjects in hospitals and on college campuses are fully protected it is arguably impossible to provide those safeguards to those behind prison walls and razor wire fences.
Search for Jobs