worked hard to spread the news about DES and lobbied for research funding to study its effects. “DES was one of the prime movers behind the nascent women’s health movement back in the seventies.
The bulk of the educational efforts were directed at mothers and daughters, and focused on cancer risk. Women who knew that they had been exposed to DES were told to inform their health care providers, particularly gynecologists, about their exposure, and obstetricians and family practitioners who had administered DES to pregnant women were asked to inform their patients that they and their children had been exposed. Many failed to do so. Apfel and Fisher attribute the “subdued, even paralyzed responses of practicing physicians” to the “fear of facing their own mistakes, of failing in the eyes of peers and younger colleagues, of being criticized, regulated and even sued.” They conclude that “most doctors go out of their way to avoid concluding that a patient’s problem has been iatrogenically induced.” In the case of DES, that resistance to assuming responsibility has been shared by the pharmaceutical companies that produced the drug, and by the research establishment as a whole, which continues to resist a full investigation of the tragedy. Half of the fetuses exposed to DES in utero were male, subjected to a barrage of synthetic estrogen during the period of sexual differentiation, chemically primed to be exquisitely sensitive to estrogen and estrogen-mimicking chemicals for the remainder of their lives. Their stories remain untold, and no one—not DES Action, not the Centers for Disease Control, not the National Cancer Institute, not the drug companies that manufactured DES— wants to hear them.
“For a very long time, we’ve been battling with the forces that would try to keep the DES radar screen narrowly focused on cancer and, in particular, on vaginal and cervical cancer alone,” says social scientist Scott Kerlin. A DES son, Kerlin founded DES Sons Network in 1999, an online support and advocacy group for the XY children exposed to DES in utero. For years, Kerlin has been fighting the perception that DES is a women’s health issue. “Compared with research on DES daughters, there is a paucity of published research studies and public awareness focusing directly on the health effects of DES sons. The reasons for this remain at question, although evidence points in part to a history of inadequate commitment to male reproductive and sexual health issues by the DES-exposed victims advocacy groups which first called for public investigation about the effects of DES in the 1970s. It is also quite possible that the level of public awareness and U.S. governmental funding for further DES research was kept deliberately narrow (i.e., focusing on “known” effects such as vaginal cancer), and other areas of potential health effects were simply not addressed by public health funding agencies.”
Kerlin says that the latest round of research and educational materials produced by the U.S. Centers for Disease Control will not change the perception that DES is primarily a women’s health concern. “I’ve gotten advance looks at the CDC materials and it goes without saying, sons’ issues are really being neglected. It seems that this is the biggest obstacle we are facing; DES is not just about increased cancer risk or infertility, but our ‘advocates’ would never want you to know that.” Kerlin himself suffers from hypogonadism, or testosterone deficiency. Hypogonadism is one of the “unproven” effects of DES in exposed males, though animal research has shown that DES exposure causes imbalances in fetal hormone levels and impairment of normal functioning in hormone receptors. Other structural effects of exposure to DES and other estrogenic chemicals in males include epididymal (tes-ticular) cysts; hypoplastic (small) testicles; undescended testicles, or cryptorchidism; microphallus (abnormally small penis); and testicular varicoceles (irregularly swollen veins on the testicle). These enlarged veins produce a higher-than-normal temperature in the testicles and can, over years, lower sperm count, resulting in sub-fertility Hypospa-dias, a condition in which the opening of the penis is located on the underside rather than at the tip; and urethral meatal stenosis, a narrowing of the opening of the penis, have also been noted in DES sons. Gy-necomastia, enlargement of the male breast, has been noted not only in DES sons but also in adult male agricultural workers exposed to the chemical.
Scott Kerlin stumbled onto another potential outcome of DES exposure in sons when his DES Information Network was a few months old. Kerlin had created the online discussion group to fill the need for “greater interconnectedness” and communication among DES sons. Mothers and daughters had being doing so for years, online and at meetings. DES sons, by contrast, were a mostly silent, mostly invisible group. By creating a forum for the men to discuss their concerns, Ker-lin hoped to prod the DES advocacy groups and government funding agencies to recognize the wide range of health effects experienced by sons and the lack of attention to their needs. “The DES Sons Online Network was also formed to expand awareness about the range of existing research about DES and males’ health and to explore other issues affecting the physical, mental, sexual, and psychosexual health of DES sons—particularly issues which had been suggested in previous existing research studies about DES and males but which need further investigation,” Kerlin says. For that reason, he asked all new subscribers to the online group to submit a brief overview of their health concerns and past health issues as well as a confirmation of DES exposure. Over a quarter of the first forty members of the list noted concerns about issues relating to sexuality and reproductive health.
Men are notoriously tight-lipped about health problems, and Kerlin was congratulating himself on having managed to create a safe, trusting environment in which list members felt comfortable discussing such personal concerns. Then, a new list member raised an issue that initiated a flood of responses, saying that he had, from his earliest youth, felt like a girl, and that he was, in fact, transsexual. Once the issue had been raised, it did not go away. Other list members began to speak about their own gender-identity issues, and “over subsequent months, these issues became more substantial in list discussions, at times becoming the dominant themes raised by members,” Beyer and Kerlin note in a 2002 paper. Some list members objected to the turn that the discussions were taking. They may have had reproductive health problems, but they were heterosexual men, and they were uncomfortable with the new focus on gender identity. Eventually, Kerlin and Beyer (who had become co-moderator of the group in 2001) set up a separate list (DES Trans) for list members who identified as trans-gender, transsexual, or intersexual.
“About 50 percent of our two hundred people in the DES Sons Network exhibit some form of gender variance. Most of them joined us when we didn’t talk about gender variance at all,” says Beyer. “I would say about half of the people on our list came unknowing that
DES was connected with gender.” In July 2004, on the fifth anniversary of the DES Sons Network, Kerlin reviewed his data and concluded that of the approximately six hundred individuals who had contacted the list for information or support in the previous five years, two-thirds of those who joined the list did not mention gender issues or concerns during their introductions, health histories, or subsequent postings. However, ninety-three individuals with confirmed prenatal DES exposure had indicated that they were either transsexual, trans-gendered, gender dysphoric, or intersexed. Another sixty-five individuals who “strongly suspect” DES exposure identified themselves using one of those four categories.
Kerlin and Beyer are convinced that the DES Sons Network has broken the seal on the conspiracy of silence about the effects of DES exposure on sons, particularly its association with gender identity disorder in males. Not a single DES cohort study has explored this question. “It seems that the entire focus of any ongoing ‘cohort’ tracking for sons is to look for signs of cancer risk. Other health issues just don’t seem to be included,” Scott Kerlin told me during a series of e-mail and telephone conversations in 2002 and 2003. All current DES research is based on the DES Combined Cohort Studies (DCCS)— approximately five thousand women exposed to DES during pregnancy; four thousand unexposed (control) mothers; five thousand exposed and twenty-five hundred unexposed daughters; and two thousand exposed and two thousand unexposed sons. According to the U.S. Centers for Disease Control, “the goal of the DCCS is to determine whether the health risk of cancer among DES-exposed individuals is increased as a result of exposure to DES. Other health outcomes, such as infertility and pregnancy outcomes, are also being investigated through the DCCS.” It goes without saying, Kerlin and Beyer note, that there is no mention of gender variance in these studies. “Those studies are just not looking at the question of gender variance or anything remotely connected to it.”
Kerlin has located a few articles raising the issue of prenatal DES exposure and feminization in males dating as far back as 1973, when researchers at Stanford found not only increased incidence of hypospa-dias but also “lower ratings on variables related to general masculinity, assertiveness and athletic ability” in twenty six-year-old
