A new book co-authored by a Penn State Abington faculty member and a University alumna has garnered international attention for its documentation of heinous post-World War II medical experiments on institutionalized children.
"Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America" is the result of painstaking research by Judith L. Newman, associate professor of human development and family studies at Abington; alumna Allen M. Hornblum; and medical writer Gregory J. Dober.
The book details one of the darkest chapters in modern American medical research. Infants and children who were institutionalized due to developmental and physical delays became “cheap and available test subjects” for some medical and scientific organizations in the country.
The authors spent years interviewing surviving test subjects and their family members. They collected data from long-closed state hospitals and orphanages, medical and university archives and libraries, culling the correspondence of medical investigators. Their quest documented how and why thousands of disenfranchised children were subjected to lobotomies and exposed to a variety of diseases and chemicals in the name of science.
"Against Their Will" has received positive reviews from around the world, including one published on the bostonglobe.com: “The authors weave a compelling and disturbing narrative…which presents a riveting and disturbing story that seems to mostly have been forgotten until now.”
According to Newman, the book is the outgrowth of the expertise and passions of its authors.
“This is a logical extrapolation of Allen Hornblum’s previous book concerning research exploitation of prisoners. And I have taught research ethics in my child development courses since 1977 as well as in my ethics course for psychological and social science majors since the late 1990s,” she said.
Newman wants the book to provoke thoughtful discussions about the rights of individuals.
“Even if the outcomes of many of these studies led to important findings that may have benefited many others, that still does not justify violating any one person's rights, especially if that person hardly has a voice given their low status in the world,” she said.
And Newman believes that the years she invested in developing this book will benefit her students at Abington.
“This book validates the passion behind my challenge to them to behave ethically and professionally as they move into their adult lives and careers.”
Although the experiments occurred 50 years ago, Newman, Hornblum and Dober say the lessons from them are just as important as ever.
“The hope is that by understanding our history, researchers will be vigilant to not repeat it. It will hopefully encourage them to consider whether the benefits of any given experiment outweigh the risks and to think more seriously about those risks,” Newman said. “If one changes the way they think about those who help us with our research as ‘participants’ rather than as ‘subjects,’ that can begin to change the obvious and long standing power imbalance.”
Hornblum, the recipient of the 2012 Abington Alumni Achievement Award, is the author of five other books including the best-seller "Acres of Skin." He is a sought after lecturer and has presented his research at universities and medical schools including Penn State’s Rock Ethics Institute.
The authors will appear at Abington this fall to discuss "Against Their Will." Details will be available by mid-August at www.abington.psu.edu/CA