The Smiths’ studies had no control group and were not double-blind. They compared one group of pregnant women with previous miscarriages to previous studies of entirely different groups of pregnant women with previous miscarriages. There was no real way of knowing if the differences they saw were due to diethylstilbestrol. The Smiths, though, must have been seduced by the story they themselves were telling—that steps could be taken to control pregnancy, to steer it around disaster.
And they seduced the whole world with it. Their story’s power drowned out doubts for a long time. In 1953, a double-blind, controlled, randomized trial showed that in fact diethylstilbestrol was ineffective at preventing miscarriage—but the drug continued to be prescribed to pregnant women. In 1959, the FDA banned the use of DES in stimulating poultry growth because high levels in chicken meat were leading to side effects in humans—breast growth in males among them—the drug still, astonishingly, continued to be prescribed to pregnant women.
Finally, in 1971, the immense harm beneath the Smiths’ seductive story fully surfaced. A.L. Herbst et al published a paper in the New England Journal of Medicine linking use of DES in pregnancy to much higher rates, for the female babies born to those mothers, of early-in-life clear cell adenocarcinoma, a rare vaginal cancer. The FDA, while it stopped short of banning DES, issued a bulletin to physicians saying it was contraindicated for use in pregnant patients.
But terrible damage had already been done. In the decades since the FDA’s bulletin, the female babies of the women who were treated with DES have demonstrated higher than normal rates of breast cancer, of malformations of the reproductive tract, of infertility and ectopic pregnancy and miscarriage and preterm labor, in addition to clear-cell carcinoma. While these seeds were sown in utero, they were sown on the inside, so it took time for their effects to be felt, time that allowed many more seeds to plant themselves. It’s estimated some 5 to 10 million pregnant women and their babies were exposed to DES, and these women and their descendants continue to advocate for both disclosure and justice today.