LGBTQ+ and DES Exposure

One of the big questions in recent years about prenatal DES exposure is whether it might have had an effect on people’s sexual orientation or gender identity. Our society has increasingly accepted the medical fact that neither sexual orientation (being attracted to the opposite sex and/or the same sex as you or no attraction to either) nor gender identity (which gender, neither, or both, that you identify yourself as) are choices.

However, a lot of uncertainty remains about the chemical processes in our bodies that determine them. There is research to suggest that genetics, our ancestors’ past exposures and prenatal exposure to certain hormones—primarily testosterone—might play a role in determining sexual orientation or gender identity. The DES community has long discussed the possible role that prenatal exposure to a synthetic hormone could have played in gender and sex identity.

The DES community seems to have a significantly higher percent of LGTBQ+ members than the general population. A January 2020 research study article which appeared in the journal Archives of Sexual Behavior conducted by the National Institute of Health DES cohort study researchers stated: “Brain organization that occurs in the prenatal period may influence an individual’s sexual and gender identities.” This study provides some evidence that prenatal exposure to DES may increase the likelihood of being gay among DES Sons, but DES Daughters seem less likely to be lesbians than unexposed women. “In summary, the findings showed that women who were prenatally exposed to DES were signifcantly less likely to report being lesbian or bisexual. In contrast, while men who were prenatally exposed to DES were somewhat more likely to report being gay or bisexual, the estimate was very imprecise and compatible with chance.

Finally, very few individuals reported currently thinking of themselves as a gender different from that assigned at birth in either the exposed or unexposed group.” But one study cannot prove a trend overall, and this study could not address the question of gender identity at all because so few people were transgender. Researchers will need to continue to investigate sexual orientation and gender identity as they relate to prenatal DES exposure. This new study was covered in our Spring Voice 2020. Logged in members may read it in the Archived Voices section.

Gender, Sex, Sexuality and DES-Exposure: A Research Study

Please note: this study was funded by DES Action, USA and was conducted from September 2017-February 2020. Dr. Luce has completed this phase of the study and is no longer accepting new participants. If Dr. Luce extends the study into other phases and requests participants, DES Action will inform our population.

Dr. Luce’s Final Report of the study: Embodying Transgenerational Exposure: Gender/sex/sexuality and experiences of being DES-exposed (pdf).

A Letter from Dr. Jacquelyne Luce About the Study

Jacquelyne Luce, PhD
Principal Investigator and Lecturer in Gender Studies
Department of Gender Studies
Mount Holyoke College

How has your exposure to DES shaped your understanding of gender, sex, and sexuality? With a grant from DES Action USA, I am conducting a new research project exploring the relationships between people’s experiences of gender, sex, sexuality, and sexual orientation and their experiences of the physical and psychological effects of being DES-exposed.

This is an area of study that has not received much prior attention.

Most members of the DESexposed second generation would have reached puberty between 1960 and 1985, a time of both very strong societal ideas about femininity and masculinity, as well as increasing resistance to expectations about what it means to be a woman or man.

New ideas about sex hormones and techniques of genital surgery also emerged during this time period, shaping various fields of intersex and transgender health. The third generation of DES-exposed people is likely to have been born anytime between 1975 and now, experiencing life in a world of both rigid and fluid ideas about gender, sex and sexuality.

My work as a researcher involves seeking out and listening intensely to people’s stories about their experiences of the body, health, disability and difference, and situating these within local and global developments in science and medicine.

I wonder: How can members of the DES-exposed communities, who lived through the forefront of the women’s rights movement, the LGBT rights movement, and the Intersex rights movement, contribute to our understandings of the relationship between bodies and identity? How can the stories of this community help us to better understand the historical ongoing health, advocacy, and research needs of LGBTIQ and gender non-conforming DESexposed people?

We will conduct interviews by phone and video conference, recording these with permission. We will anonymize everyone who shares their story in order to protect privacy. These interviews will be like open-ended conversations.

We are not looking for any particular “answer.” Instead, participants will help us shape our research, and the larger themes we explore.

We will be sharing the ongoing thoughts that emerge from this research with the DES-exposed community. If you would like to receive more information about the project please contact jluce[@]mtholyoke.edu.

The Complete Report

Dr. Luce’s Final Report of the study: Embodying Transgenerational Exposure: Gender/sex/sexuality and experiences of being DES-exposed (pdf).

Scott Kerlin’s Paper on DES Exposure in Males and Gender Related Disorders

Scott Kerlin, Ph.D, presented a paper at two health conferences about DES Sons, sex and gender in 2004 and 2005. What he presented is a worthwhile and useful study, but it’s often misunderstood. Kerlin’s goal was not to count what percentage of DES Sons had physiological damages, nontraditional sexual orientations or gender ambiguity. Instead, the study focused on experiences. It’s called a “qualitative” study, with the purpose of collecting experiences and presenting them in an organized way to understand the concerns of a specific group and what importance individuals in that group place on those concerns and experiences.

To collect his data, Kerlin started an online DES Sons group to recruit men to participate in his study. Over five years he gathered 500 study participants. To qualify to be in the study, the person had to be considered male when they were born (called cis-male) and affirm that he either knew or strongly believed he had been exposed to DES in utero. He had to have been born between the late 1940s and early 1970s, the years DES was most commonly used in pregnancy.

Kerlin had each study member report their health history (no medical records were required) and medical and psychological events. Then he conducted several online surveys to determine the issues of greatest concern among the DES Sons. Most interestingly, he conducted open-ended personal interviews with individual DES Sons.

Because the group was not randomly gathered and proof by medical records was not required to show DES exposure, the research can’t be extrapolated to all DES sons or to the general population. However, the interviews are valuable. No other qualitative exploration of the feelings and concerns of DES Sons had been published at the time. (Since then, Jacquelyne Luce’s 2019 qualitative study on gender, sex, and sexuality has been published and touches on some overlapping issues, though it’s a very different study: Embodying Transgenerational Exposure: Gender/sex/sexuality and experiences of being DES-exposed (pdf).)

In his surveys and personal interviews, Kerlin concluded that the three most important issues to DES Sons in his study were the following: (a) hormonal/endocrine health issues; (b) gender identity and sexual health issues; and (c) psychological/mental health issues, including anxiety and depression. Again, however, these were DES Sons who had chosen to join his group—they were “self-selected” in research terms—so these three primary concerns represented only those of the Sons in his group, not necessarily all DES Sons.

Kerlin reported that in his non-random group of DES sons, “Somewhere between one-quarter and one-third of members of the DES Sons’ network since 1999 have indicated that gender dysphoria, transsexual outcomes, and/or sexual health issues were among their top concerns.” (Note: The term “transsexual is no longer commonly used in gender and sex scholarship, but it was in common use at the time.)

Kerlin found a relatively high prevalence of transsexual, transgender, and intersex: “More than 150 network members with “confirmed” or “strongly suspected” prenatal DES exposure status indicated they are either transsexual (pre- or post-operative, 90 members), transgender (48 members), ‘gender dysphoric’ (17 members), or intersex (3 members).”

The high level of transsexual, transgender, and intersex people is not surprising considering the group that was surveyed, nor does it mean anything about potential effects of DES. The way groups like this come together is through word of mouth in social networks. It would only require one or two original members to be LGBTQI+ and/or non-cis/non-binary/non-heterosexual to increase the likelihood that a disproportionately larger number of other non-cis/non-binary/non-heterosexual individuals would join. The word “disproportionate” is meant in the sense that the percentage of members in the LGBTQ+ category does not necessarily reflect the percentage of overall DES-affected non-cis-female people.

Or, a much simpler way of saying all that is that these groups are self-selected, and what contributes to that self selection changes as the group composition changes. That does not invalidate the findings because the study’s goal was qualitative (not quantitative), to understand experiences. It also means, however, that we cannot draw any conclusions about what DES exposure may or may not cause in those exposed before birth. The only conclusions we can draw are about similar feelings, values, beliefs, concerns, etc. across a group of male-identifying people who came together around a shared experience. If a DES-exposed person not involved in Kerlin’s group reads his study and identifies with many of the men’s experiences, Kerlin’s findings might be validating and helpful, revealing that they aren’t alone in how they feel.

One final note worth considering about Kerlin’s study is that it was presented at two conferences, but never published in a peer-reviewed publication. In general, publication in a peer-reviewed publication suggests other scholars in the same area of study have reviewed the methods and findings and agreed that they were carried out and reported according to usual research standards. A study not published in a peer-reviewed journal can still be valid and helpful, but it often requires more skepticism without having gone through layers of review.

In addition, the author does not have any other peer-reviewed medical publications, though he does have a couple educational research publications. That means Kerlin does not have a scholarly reputation based on extended research in medical or sociological science, and it’s unclear how much experience he has in conducting qualitative or quantitative research in topics related to medical exposures or sociological experiences. These points do not invalidate his findings, but they do mean we should assess them with a healthy dose of skepticism about their meanings because no other researcher reviewed the research for its quality and methodology.

The two conferences where the paper was presented were: E.Hormone 2004, New Orleans and International Behavioral Development Symposium 2005, Minot, North Dakota.

Scott Kerlin’s Paper.