Introduction and Background
During the 1970s and 1980s an increasing amount of public and
scientific attention was paid to the health and medical problems of women and men whose mothers and grandmothers took diethylstilbestrol
(DES) for prevention of miscarriage. A potent estrogenic chemical, DES was first developed in 1938 and initially became available
in the U.S. for treating a range of gynecologic conditions in 1941 (Apfel and Fisher, 1984). A few years later its approval
by the FDA was broadened to include treatment of pregnant women for the purpose of preventing miscarriages (spontaneous abortions).
Though its efficacy had long been doubted by some in the medical community (Bambigboye and Morris, 2003; Dieckmann, 1953;
Edelman, 1986), DES remained popular until publication of research in the early 1970s identifying an apparent association
between prenatal exposure to DES and a rare form of vaginal cancer in females (commonly called “DES daughters”)
whose mothers used DES (Giusti, Iwamato, and Hatch, 1995; Heinonen, 1973; Herbst and Bern, 1981).
It is estimated that as many as five to ten million Americans
received DES during pregnancy or were exposed to the drug in utero between the late 1940s and early 1970s (Giusti, Iwamoto,
and Hatch, 1995). The numbers of male offspring exposed in utero to DES (“DES sons”) have been estimated at between
one and three million in the U.S. (Laitman, Jonler, and Messing, 1997) and similar estimates exist for the numbers of American
females exposed in utero (Edelman, 1986). Hundreds of thousands of DES sons and daughters were also born in Canada, Europe
and Australia during a similar period.
Compared with the history of research on the range of health
effects of DES daughters, there are relatively few published medical research studies conducted with DES sons. And yet, the
finding that prenatal DES exposure also led to detrimental effects for a number of exposed males has existed since the 1970s
(Andonian and Kessler, 1979; Bibbo et al., 1977; Gill et al., 1979; Gill, et al., 1988; Laitman et al., 1997). These effects
include a variety of structural abnormalities of the reproductive system such as epididymal (benign) cysts, hypoplastic testes
or undescended testes (chryptorchidism), microphallus or underdeveloped penis which may be associated with an intersex condition,
and hypospadias (opening of the penis is on the underside rather than at the end). Although DES exposure has been suspected
as a possible source of male infertility and testicular cancer (Giusti, Iwamato, and Hatch, 1995, it is still uncertain whether
prenatal DES exposure has led to increased risk of infertility (Wilcox et al., 1995) or increased rates of testicular cancer
as well as other types of cancer in males (Strohsnitter, et al. 2001).
While published primary studies of other health issues among
males with prenatal exposure to DES are not numerous, there is some available research investigating possible links between
DES exposure and increased potential for major depressive disorders and other psychiatric effects (Katz, et al., 1987; Meyer-Bahlburg
and Ehrhardt, 1986; 1987; Pillard et al., 1993; Vessey et al., 1983). More recent discussion of possible psychiatric effects
of prenatal DES exposure, including gender-related effects, has been forwarded by Verdoux (2000; 2002) and Boog (2004). Research
investigating possible psychosexual impact of DES exposure in human males (feminization and demasculinization) has been published
since the 1970s (Dorner, 1985; Green, 1978; Kester, Green, Finch, and Williams, 1980; Reinisch and Sanders, 1984; Reinisch,
Ziemba-Davis, and Sanders, 1991; Yalom, Green, and Fisk, 1973), while research on endocrine disruptors which includes discussion
of DES as a possible link in a variety of sexual differentiation disorders in humans has been produced more recently (Boisen,
et al., 2001; Gupta, 2000; McLachlan, 2001; McLachlan et al., 2001; Sharpe, 2001; 2004; Skakkebęk, Meyts, and Main, 2001;
Sultan et al, 2001; Swaab et al., 2002; Toppari and Skakkebęk, 1998).
Methodology
This study was initially conceptualized as a one-year (1999-2000)
virtual (online) focus group of DES sons from around the world, with the basic purpose being discussion and documentation
of the range and history of reported adverse health effects among DES sons. Virtual focus groups are online discussion communities
or support groups which, when effectively designed and moderated, enable investigation of a particular issue (for example,
adverse health effects) from the perspective of the individuals who are most directly affected (Murray, 1997). The tools and
features of online forums like the DES Sons International Network enable a collective engagement of issues raised by participants
and fresh insights for participants and researchers.
The DES Sons International Network was developed with a number
of primary goals in mind: to bring together an expanding range of individuals born as males who were exposed prenatally to
DES, to expand awareness of the range of existing research about DES and male health, and to explore other issues affecting
the physical, mental, and reproductive health of DES sons. Most important, it was meant to further investigate still unresolved
questions regarding DES sons, consistent with recommendations issued by the National Cancer Institute and National Institutes
of Health (National Cancer Institute, 1999).
Upon creation of the DES Sons Online Network (now the DES Sons
International Network) in 1999, announcements about the online network were made on a variety of online DES and reproductive
health information networks. Subscription requests were carefully screened for (1) evidence or confirmation of the likelihood
of prenatal DES exposure; (2) confirmation of birth between the late-1940s and early 1970s which was the critical “window”
during which DES was administered as an anti-miscarriage drug; (3) confirmation that the subscriber was born as a male and
thus qualified to be considered a “DES Son”. Although a few other individuals whose exposure status was unknown
were permitted to join the Network they are not included in the statistical analysis that is covered in this report.
Data-gathering within this study has used the principles of grounded
theory in qualitative analysis which involves a process of continuous expansion and refinement of issues in online discussions,
combined with ethical principles of precaution around network members’ identities and privacy. As individuals joined
the DES Sons International Network, they provided (privately to the researcher and on occasion in the support group discussions)
an overview of health and medical histories as well as other questions or issues surrounding their DES exposure. Primary research
on DES sons' health issues included open-ended questions, occasional surveys or polls of members, periodic online chats (conducted
in “real time”) to answer questions on particular health questions such as DES exposure and infertility, and the
sharing and posting of relevant published DES research studies in order to generate discussion and further awareness. Summary
results from most of the available text-based data are being analyzed using sophisticated qualitative data analysis software.
Within the first year of Network discussions, some members began
to raise issues with regard to sexuality, sexual orientation, and gender identity. Over subsequent months, these issues became
more substantial in list discussions, at times becoming the dominant themes raised by members. The Network continued to attract
interest and new members after the first year and it was decided to continue the Network indefinitely. By the summer of 2004,
the DES Sons International Network had more than 200 active subscribers.
As a result of significant attention to gender and sexual diversity
issues among some network members, a support group (DES Trans) for these members was formed in January 2002. As of July 2004,
more than 130 individuals had joined DES Trans. This underscores the significance of gender identity and intersex conditions
as major concerns among a significant portion of persons who have been exposed to DES.
Findings
This section presents an introduction to some of the key findings
from research conducted with the members of the DES Sons International Network between July 1999 and July 2004. A more comprehensive
summary of the full scope of findings will be completed in 2005.
APPENDIX A provides an overview of a January 2002 poll of members
of the DES Sons International Network when its total membership was just over 100. Members were asked to indicate the one
term pertaining to their gender or sexual identity or sexual orientation that they felt most described how they self-defined
among their closest friends. What is significant among the findings of this poll is that among the 63 network members who
answered the question (approximately 70% of active network members), the largest number (23, or 36.5% of respondents) identified
as “transsexual” (pre- or post-op), while another 15% identified as transgendered, and 13% identified as “intersex”
or “androgynous.” “Straight males” represented 17.5% of respondents (the second highest response group),
while 13% identified as bisexual or gay males.
APPENDIX B presents an overview of the range of issues raised
by the approximately 500 members of the DES Sons International Network during its first five years. (Note re sample size:
as of spring 2004, the number of individuals with known or likely DES exposure who have joined the Network since 1999 reached
500 (base sample size = 500). Issues raised by Network members include:
•
Principal Reported Health Concerns of DES Sons
Based on results from a variety of assessments of individual
DES sons in the Network, the three health areas of greatest concern among Network members are (a) hormonal/endocrine health
issues; (b) gender identity and sexual health issues; and (c) psychological/mental health issues including anxiety and depression.
•Additional Reported Adverse Health Effects
Members identified a range of adverse health effects including
autoimmune disorders, infertility, reproductive tract abnormalities, ambiguous or underdeveloped genitalia, epididymal cysts,
testicular cancer, and erectile dysfunction.
•Significant Gender Dysphoria Prevalence
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.
•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).
•Low Cancer Prevalence
Only a small number of DES sons contacting the network have reported
experiencing any type of cancer-related health problems (primarily testicular cancer during younger years).
Discussion and Implications
During the first five years of research within the DES Sons International
Network some important accomplishments and discoveries have occurred. These will be more thoroughly detailed when a subsequent
edition of this paper is completed in 2005. Accomplishments and a brief examination of the implications include the following:
•Through the first five years of this study a base sample of 500 individuals with confirmed or “suspected”
DES exposure from a wide range of locations around the world has been obtained.
Historically, research with DES sons has often entailed relatively
low numbers of individuals, making it difficult to extrapolate from one study to broader populations of DES sons. The research
in the DES Sons International Network, while involving relatively low levels of researcher control over issues of geographic
location or dosage/timing of exposure, has enabled deeper exploration of issues of common life experience and human development
among DES sons. Grounded Theory (Glaser and Strauss, 1967), as a rigorous method of qualitative inquiry in which theory is
developed inductively from a corpus of data, was used in this study to enable issues to emerge that otherwise might be overlooked
in study designs involving greater levels of control.
•Endocrine system disorders such as hypogonadotropic hypogonadism in DES sons have been among the most common
reported adverse health effects in this research study.
Although the prevalence of endocrine system disorders among DES
sons has not been discussed in any of the existing published research on DES-exposed populations, both the Endocrine Society
and the American Association of Clinical Endocrinologists (2002) have recognized prenatal DES exposure as a potential risk
factor for endocrine disorders including hypogonadism. Our research confirms that this is an issue that needs further attention
in future studies of DES sons.
•Mental health and psychiatric issues (including depression and anxiety disorders) are relatively significant
among the population of DES sons participating in this research.
Our findings support the efforts, most recently by Verdoux (2000,
2002), to obtain better understanding about the risks and causes (if any exist) of psychiatric disturbances among DES-exposed
individuals. It is hopeful that future research on human health effects of exposure to endocrine disrupting chemicals (i.e.
assessing neurotoxicity) will include psychiatric disturbances such as major depression, anxiety disorders, eating disorders,
and psychoses as potential endpoints for analysis. Additional questions may be explored as to whether psychiatric conditions
such as increased depression and/or anxiety disorders in DES sons have a foundation in primary endocrine system disorders.
•Relative infrequency of reported cancer among the DES sons in this research is consistent with most existing
long-term studies demonstrating there is limited cancer risk in males directly due to prenatal DES exposure.
While the rate of total cancer occurrence in the DES Sons International
Network could not be rigorously measured, numerous efforts have been made to generate discussion about cancer risks and in
particular, to encourage dialogue regarding testicular cancer experiences. Approximately five members of the network between
the study years of 1999 and 2004 indicated some past or present experience with testicular cancer. It appears that overall
cancer outcomes among network members have been low, a finding consistent with research by Strohsnitter et al. in 2001.
•One of the most significant findings from this study is the high prevalence of individuals with confirmed
or strongly suspected prenatal DES exposure who self-identify as transsexual, transgender, intersex, or who have identified
serious difficulties with gender dysphoria.
Throughout this study, the issue of gender dysphoria (Colucciello,
1996) and the prevalence of a significant number of self-identified male-to-female transsexuals (Cohen-Kettenis and Gooren,
1999) and transgendered individuals (Conway, 2004) as well as some individuals who identify as intersex, androgynous, gay
and bisexual has raised fresh awareness of historic theories of a possible biological/endocrine foundation to variations in
psychosexual development in humans (including sexual orientation, core gender identity, and sexual identity). Some of these
theories were first forwarded in the 1960s by experts in sexual medicine (Benjamin, 1966, 1973; Diamond, 1965, 1996) and have
been further refined relative to the role of hormones in shaping gender-based behavior and sexual orientation (Dorner, 2001;
Friedman and Downey, 2002; Wilson, 1999; Michel, Mormont and Legros 2001; Rudacille, 2005). The discoveries in this study
suggest that gender dysphoria and transsexual changes may be a plausible toxic endpoint for future exploration of the human
health effects of exposure to endocrine disruptors. Further, they call into question the accuracy and adequacy of previous
research and conclusions by Titus-Ernstoff et al. (2003) in which they conclude that there is little support for a hypothesis
that prenatal DES exposure influences psychosexual development in males and females (Udry, 2003).
•The findings in this study relative to developmental abnormalities of the male reproductive tract substantiate
previous research on prenatal DES exposure and various structural deformities in some DES sons and lend new support for the
hypothesis that endocrine disruptors may have substantial negative effects in human males.
In underscoring the human health effects of prenatal exposure
to DES in males, the findings in this study are consistent with McLachlan's (2001) proposition that DES be considered as a
model for developmental estrogenization.
This paper has provided a brief encapsulation of the leading
trends and outcomes from a preliminary review of results from a five-year study of DES sons. Many of the issues and questions
deriving from this study will be further examined and refined during 2005. Interested researchers are invited to join the
DES Research online group located at:
http://groups.yahoo.com/group/des-research
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Websites
DES Sons International Network Home Page
DES Sons International Network Research Directory
Directory of DES Research Literature by Decade, by Scott Kerlin
A Discussion on the Relationship Between Gender Identity and
Prenatal Exposure to Diethylstilbestrol (DES) in 46XY Individuals, by Kathy Cochran http://www3.telus.net/des1/
The DES Sons Online Discussion Network: Critical Issues and the
Need for Further Research by Scott Kerlin, Ph.D. and Dana Beyer, M.D. (unpublished draft paper, August 2002)
Transsexualism: An Unacknowledged Endpoint of Developmental Endocrine
Disruption? Master’s thesis by Christine Johnson, Evergreen State College (Washington), June 2004
Abstract: http://www.transadvocate.org/id31.html
Basic TG/TS/IS Information, by Professor Lynn Conway, Ph.D. (2004)
A Kindred Spirit: Dedicated to the Advancement of Knowledge and
Understanding of Gender, by DaleLynn Sims
Pacific Center for Sex and Society, John A. Burns School of Medicine,
University of Hawaii, Professor Milton Diamond, Ph.D., Director http://www.hawaii.edu/PCSS/
APPENDIX A
Gender Identity, Sexual Orientation, and Sexual Diversity of
DES Sons
January 2002 Poll of DES Sons Network Members
Background:
The following question was posted as a “poll” for
network members on December 22, 2001 and respondents were allowed until January 13, 2002 to respond:
If you were talking with your closest friend who likes you “just
as you are,” what term
would you use to represent how you define yourself at the present
time? (choose one)
The responses were as follows:
____________________________________________________________________________________________
# ResponsesIdentity% of Respondents
23 Transsexual
(pre- or post-op) 36.5
* TOTAL: 63 Individual Responses from 102 network subscribers.
Response rate approximately 65-70% based on an estimated 90-95 active list participants receiving the survey in January 2002;
estimated 10 additional members received survey but were not accessing their computers during the survey period of December
22, 2001 and January 13, 2002.
____________________________________________________________________________________________
APPENDIX B
DES Sons International Network 5-Year Summary Statistics: First
Findings
____________________________________________________________________________________________
Scott Kerlin, DES Sons International Network
5-Year Research Summary Update, October 2004
I. Basic Statistics and Findings on DES Sons Participating in
the DES Sons International Network Between 1999 and 2004
1. In the five years since formation of the DES Sons Network
in July 1999, approximately 600 individuals have requested more information or support through e-mail follow-up requests and/or
requests to join the Network. This is over and above all information that is freely available for visitors to the Network’s
website (http://health.groups.yahoo.com/group/des-sons) which provides substantial information and resources on DES without
subscription. Because the DES Sons International Network does not maintain statistics on total Internet traffic to its website,
there is no accurate method to gauge how many other affected individuals may be utilizing this information.
2. Of those 600 individuals who have sought further DES information,
approximately 500 are 46XY males who indicated at the time of my initial Network subscription screening that they had either
strong suspicions (based on evidence from family members) or actual confirmation (from mother, or direct access to medical
records) that they had been exposed to DES in utero. These 500 individuals with confirmed or likely prenatal DES exposure
have been members of the network sometime between 1999 and 2004. For this reason I consider our study’s base sample
size to have attained a total of 500 DES sons as of spring 2004.
3. The vast majority of individuals whom I have allowed
to join the Network had either “confirmed” (i.e. directly through medical records access or indirectly through
personal conversation with mother) or “strongly suspected” (i.e. all evidence points in that direction, but medical
records access and/or contact with mother not possible) prenatal DES exposure. However, a few (less than 50 altogether since
the Network was formed) who had no way of confirming their exposure also were permitted to join in order to assist them with
unanswered questions.
4. Based on responses between 1999 and 2004 to Network
surveys, responses from individual online or telephone interviews, and follow-up discussions with DES sons members, the three
areas of greatest health concern among DES sons in the DES sons’ network appear to be (a) hormonal/endocrine health
issues; (b) gender identity and sexual health issues; and (c) psychological/mental health issues including anxiety and depression.
5. Somewhat lower proportions of members indicated concerns
regarding autoimmune disorders, infertility, reproductive tract abnormalities, ambiguous or underdeveloped genitalia, epididymal
cysts, testicular cancer, and erectile dysfunction. Because not every individual member has necessarily disclosed the full
range of health issues or medical concerns by which he or she has been affected, the relative significance of reported health
concerns among DES sons in this research study is an approximation, based on rigorous qualitative analysis of information
which has freely volunteered by network members.
6. Despite exhaustive efforts to clarify the history of
health issues experienced by DES sons, it appears that only a small number of DES sons contacting our Network have suffered
from any type of cancer-related health problems (primarily testicular cancer during younger years). The Network continues
to raise awareness among members regarding potential cancer risks. These efforts include participation in the annual prostate
cancer awareness month activities of the National Cancer Institute and membership subscription to monthly online alerts from
the International Society for Men’s Health and Gender (ISMH). Despite my numerous inquiries, no case of prostate cancer
has been disclosed by network members as of July 2004.
II. DES Sons and the Significance of Gender Identity: Statistics
of Individuals with Gender-related Issues or Outcomes Among Network Members
1. Within a few months of the formation of the Network
in 1999, several members raised issues regarding gender dysphoria as among their (apparent) side effects. Over time this issue
became more common in private disclosures to me by members, as well as online group discussions. Over time, gender identity
issues and transsexualism emerged in discussions among regular DES Sons International Network members. Ultimately because
of the sensitivity of many gender-related discussions, some members wished to have a more private discussion environment separate
from the main DES Sons International Network. In January 2002 I formed the DES-Trans Gender Support Group (DES-Trans) for
more extensive discussions of these issues.
2. Somewhere between one-quarter and one-third of members
of the DES Sons International Network since 1999 have indicated (through my private surveys and/or interviews of members,
membership poll responses, or through personal introductions and subsequent discussion postings to the Network) that gender
identity and/or sexuality issues were among the most significant issues they needed to understand or seek further support
3. The majority of individuals who joined the Network (i.e.
somewhere between 2/3 and 3/4 of the total, or about 350 persons) did not mention gender issues or concerns during their personal
introductions, health histories, or subsequent Network discussions. I have no way of knowing how many of these individuals
may also have gender-related issues, unless at a subsequent time they have chosen to raise them (as some have in private correspondence
with me). I suspect there are others for whom it is an underlying concern but not an easy for them to articulate without fear
of ridicule or dismissal from others.
III. Statistics of Prevalence of Transsexualism, Transgenderism,
Gender Dysphoria, or Intersex Among “Likely Exposed” DES 46XY Individuals Contacting or Joining the Network (N=158)
1.Among the population of DES sons in our network who have raised gender-related questions and experiences,
I have received personal stories and/or introductions from more than 150 individuals with either confirmed or “strongly
suspected” DES exposure. Among 158 “likely DES-exposed” persons (confirmed or suspected), their summary
descriptions of identity and/or experiences reflected the following.
There have been at least 93 individuals with confirmed prenatal
DES exposure who indicated they are either transsexual, transgendered, gender dysphoric, or intersex. (These terms come from
individuals' self-description of their identities or primary health concerns.) Here is the distribution of those 93 individuals:
Confirmed DES-Exposed and Gender-Related Issues (N=93)
(1)Confirmed
Exposed and Transsexual: 54 individuals
(2)Confirmed
Exposed and Transgender: 26 individuals
(3)Confirmed
Exposed and Gender Dysphoric: 10
individuals
(4)Confirmed
Exposed and Intersex: 3 individuals
2.There have been at least 65 individuals with “strongly suspected but not yet confirmed” exposure
who indicated they are either transsexual, transgendered, gender dysphoric, or intersex. Here is the distribution of those
figures:
Strongly suspected, not confirmed DES Exposed and Gender-Related
Issues (N=65)
(1)Suspected
Exposure and Transsexual: 36 individuals
(2)Suspected
Exposure and Transgender: 22 individuals
(3)Suspected
Exposure and Gender Dysphoric:
7 individuals
(4)Suspected
Exposure and Intersex none reported
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