by Susan Bell
Forty years ago, the New England Journal of Medicine published an article about the synthetic estrogen DES that is now recognized as a watershed in the annals of medicine.
The authors of the study, physicians at Massachusetts General Hospital, reported an association between DES – a prescription “wonder drug” intended to prevent miscarriages – and vaginal cancer in women who were just 15 to 22 years old. From the 1940s to the 1970s, between 5 and 10 million pregnant women and their sons and daughters were exposed to DES during pregnancy. When the daughters became teenagers and some of them developed reproductive tract cancer, the MGH physicians identified DES as the first transplacental carcinogen, and the daughters took on the new identity of “DES daughters.”
When DES daughters had trouble becoming pregnant and giving birth to healthy babies, DES was connected with miscarriage and other problems during pregnancy. These characteristics – crossing the placenta, disrupting the developing fetus, and affecting the bodies of DES daughters in multiple ways that often do not appear for many years – are those that identify DES as the first endocrine disruptor.
Much has been written in the past few weeks about DES. There have been reports of current research about damaging effects of DES: of its possible effects on the children of DES daughters, of its significance for understanding how human reproductive organs develop, and of the dangers of too much haste and too little prudence in adopting medical technologies.
Physicians writing in the New England Journal of Medicine use the words “humble” and “trauma” and “unanswered questions” in looking back and looking ahead to the future of DES. All of this is wise and good. Yet there is more that must be said in this time of remembering.
The DES story is about more than a tragedy that occurred to a population in the mid-20th century and more than a humbling experience for medicine. It is also about a women’s health movement that questioned whether doctors always know best. These women were among the first to judge science based on their intimate, firsthand knowledge of their own bodies, and joined together in collective action for social change.
Thank goodness for one “DES mother” whose daughter developed vaginal cancer during the 1960s and for her doctor who worried too. This mother asked her daughter’s physician—who was also puzzled about the cause of her daughter’s very rare cancer and was searching for answers—whether it could have been caused by the DES she took during the pregnancy.
Her physician was Dr. Howard Ulfelder, who listened to her, took her question seriously and researched the possibilities. We should celebrate this mother for voicing her hunch and this physician for listening to her. Ulfelder became one of the authors of the NEJM article; the mother remains anonymous.
DES mothers and DES daughters began the grassroots organizations DES Action (in 1975) and the DES Cancer Network (in 1982). Among other things, we should be grateful to these organizations for their efforts in bringing about an interdisciplinary, international “workshop” about DES in 1992 – a watershed in DES research, legislation and funding. Lines of research and practice initiated at that 1992 workshop have transformed the doing of science by incorporating activists in the conceptualization and conduct of DES science.
Thirty years ago, I began a research project to understand DES daughters’ experiences. I interviewed DES daughters, read their letters to the editor of these grassroots organizations, and traced their participation in the DES workshop. The results, published in my book, trace story by story their individual and collective efforts that galvanized the watershed DES research, legislation and funding.
One DES daughter who had vaginal cancer in her early 20s was devastated when her surgeon told her she would need a complete hysterectomy. Years later, after she had returned to see him many times for examinations she told me, “I was one of the wonders of medical science,” a woman whose surgeon had saved her life and rebuilt her body. For her surgeon – one of the pioneers in surgery for DES cancer – her body was “the most wonderful thing in the world.”
By the time she told me her story, “it was nothing abnormal to have five or six guys standing around” watching and learning as her surgeon examined her during follow-ups. They learned both from him and from her. As she put it, during those exams, “I used to tease him a lot you know, ‘Oh yeah, I know what to do now.’” The repeated examinations and displays of her body had educated her as well as doctors. She too, became a bearer of knowledge about the clinical contours of DES.
In taking care of themselves these patients and their mothers created new pathways, transformed relations of power and knowledge, and contributed to making new spaces and bringing world wide attention to DES. So on this 40th anniversary of that publication, let us celebrate the courage and the unique contribution of women’s health activism to the DES story.
Susan E. Bell is Professor of Sociology and A. Myrick Freeman Professor of Social Sciences at Bowdoin College in Brunswick, Maine. She is the author of “DES Daughters: Embodied Knowledge and the Transformation of Women’s Health Politics” (Temple University Press, 2009).