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 boys whose mothers had taken DES, compared with a control group. A study published in 1992 by researchers at the Kinsey Institute shows significant differences in spatial ability between DES-exposed males and their brothers. The sample sizes in both studies were small (ten in the Kinsey group and forty in the Stanford study). However, when one considers that seven cases of clear cell adenocarcinoma in 1970 led to an investigation of the relationship between DES exposure and cancer in exposed females, one wonders why the investigation of the effects of DES on male psychosexual development and reproductive anomalies has been so muted. Even if the sample sizes have been small, “it’s not like the topic has never been examined,” says Scott Kerlin. “I’m beginning to think that sample size isn’t necessarily the most critical factor to consider when examining the published ‘findings’ of DES research.”
Pat Cody, founder of DES Action, has responded to Kerlin’s persistent questioning about the lack of attention to these issues by that organization by noting that “this subject, as I don’t need to tell you, is one that no one wants to look at and therefore we do not have any good research with a large number of random subjects and equal number of controls.” Kerlin, who admits the limitations of existing studies, remains frustrated by the unwillingness of DES lobby groups and funding agencies to investigate further the concerns of DES sons. “Since we cannot create fresh studies of DES in humans and trace its effects from birth, we are pretty much forced to look at the existing adult populations. But it would be almost impossible to gather such a population in one place physically in order to verify who they are and whether they were, in fact, DES exposed. That is, unfortunately, one of the reasons that the control/cohort studies like the Dieckman cohort from the University of Chicago have continued to be used in CDC and other DES sons and other DES sons’ longitudinal tracking studies,” he says.