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The Presence of Gender Dysphoria,
Transsexualism, and Disorders of
Sexual Differentiation in Males
Prenatally Exposed to
Diethylstilbestrol:
Initial Evidence from a 5-Year Study
Scott P. Kerlin, Ph.D.
DES Sons International Network
Kingston, Ontario, Canada
The Presence of Gender Dysphoria,
Transsexualism, and Disorders of
Sexual Differentiation in Males
Prenatally Exposed to
Diethylstilbestrol:
Initial Evidence from a 5-Year Study
Presented at E.Hormone 2004: The 6th
Annual
Symposium on the Environment and Hormones
Tulane/Xavier Universities, New Orleans
October 27-30, 2004
http://e.hormone.tulane.edu/eh2004.html
Scope of Existing Published Research
Focusing on DES Sons
• Estimated total of 1-3 million DES sons born in U.S.
(similar numbers as daughters)
• DES sons also born in Australia, Canada, and Europe
1940s-1970s
• Fewer primary studies of DES sons than DES daughters
• 1970s: first discoveries of structural & functional
abnormalities of urogenital system in some DES sons
(epididymal cysts, hypotrophic testes, cryptorchidism)
• Inconsistent findings on risks for infertility, testicular
cancer
Scope of Research on DES Sons
• Latest DES sons study of cancer outcomes suggested
little or no increased risk for most cancers in DES sons
(Strohsnitter, 2001)
• No identified increase in prostate cancer in DES sons so
far
• Immune system effects still under investigation
• Psychiatric effects (major depressive disorder,
psychoses, schizophrenia).
• First studies of psychosexual effects published in 1970s
(Continued)
DES Research Update – NCI Web Site
http://searchosp1.nci.nih.gov/whealth/DES/index.html
DES Research Update Conference,
1999 (NCI, NIEHS, NIH)
• Last conference held in U.S. discussing available and
needed research on human health effects of DES
exposure, July 19-20, 1999
• Recognizes inadequacy of existing research on DES sons,
“basic and clinical research on DES sons should be a top
priority in policy discussions.”
• Recommends further research on cancer and infertility
issues of DES sons
• Finding: More women than men are aware of DES and of
their possible exposure
• Finding: The full range of effects for all DES children,
especially DES sons, is unknown
DES Sons Web Site
The DES Sons International Network
Mission and History
• Organized as DES Sons Online Discussion Network in
1999 with emphasis on global outreach to DES sons
• Mission: Education, advocacy, research on DES sons’
adverse health effects, group support, monitoring
published research on DES and endocrine disruptors
• Goals: To encourage more primary research with DES
sons and to investigate unanswered questions about the
scope of impact
• Membership reach: Between 1999 and 2004, over 500
individuals with confirmed or suspected DES exposure
The DES Sons International Network
Scope of Outreach
• Global reach: International online outreach to locate DES
sons from Australia, Canada, Europe (especially United
Kingdom, France, Belgium), and U.S.
• Emphasis: Promote greater awareness about the
significance of DES exposure in ongoing international
research investigating effects of endocrine disruptors on
human health and behaviour
• Sources of outreach: Online and print publications
focusing on human health effects of DES;
announcements in online reproductive health networks
• Peer outreach: Network members provide further
outreach
DES Sons International Network
Research 1999-2004
• Purpose of study: Response to calls for further research
on DES sons, using online environment to inspire
discussions of health issues among DES sons from
around the world
• Study format: Conceptualized as an online focus group of
DES sons recruited from a variety of DES information
and reproductive health information online networks
• Research methods: Qualitative analysis using grounded
theory, online interviews, membership surveys, polls,
private discussions, threaded discussion topics
• Participant screening: Prospective members screened for
confirmation or likelihood of prenatal DES exposure
DES Sons International Network
Research 1999-2004
• Principal reported health concerns: endocrine
(hypogonadism); mental health (depression/anxiety);
gender identity/sexuality
• Additional reported effects (less frequent): epididymal
cysts; cryptorchidism; autoimmune disorders; infertility;
ambiguous genitalia
• Low reported cancer prevalence: five reports of history of
testicular cancer in earlier years; no other cancers
• One-quarter to one-third of members self-identify as
transsexual, transgender, or intersex
(Continued)
DES Sons International Network
Next Steps, 2005 and Beyond
• Continuing international outreach to expand membership
and future research participation
• Strengthening affiliations with international research
networks devoted to male reproductive health and
endocrine disruptors
• Widening public awareness about the “invisible harm”
from endocrine disruption in males
• Collaborating with Dr. Milton Diamond, University of
Hawaii, in administering follow-up survey for DES sons
focusing on gender and sexual health issues
Pacific Center for Sex and Society – Web Site
The Presence of Gender Dysphoria,
Transsexualism, and Disorders of
Sexual Differentiation in Males
Prenatally Exposed to Diethylstilbestrol:
Initial Evidence from a 5-Year Study
DES Sons International Network:
http://health.groups.yahoo.com/group/des-sons
Contact: des-sons-owner@yahoogroups.com

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DES Sons

  • 1. The Presence of Gender Dysphoria, Transsexualism, and Disorders of Sexual Differentiation in Males Prenatally Exposed to Diethylstilbestrol: Initial Evidence from a 5-Year Study Scott P. Kerlin, Ph.D. DES Sons International Network Kingston, Ontario, Canada
  • 2. The Presence of Gender Dysphoria, Transsexualism, and Disorders of Sexual Differentiation in Males Prenatally Exposed to Diethylstilbestrol: Initial Evidence from a 5-Year Study Presented at E.Hormone 2004: The 6th Annual Symposium on the Environment and Hormones Tulane/Xavier Universities, New Orleans October 27-30, 2004 http://e.hormone.tulane.edu/eh2004.html
  • 3. Scope of Existing Published Research Focusing on DES Sons • Estimated total of 1-3 million DES sons born in U.S. (similar numbers as daughters) • DES sons also born in Australia, Canada, and Europe 1940s-1970s • Fewer primary studies of DES sons than DES daughters • 1970s: first discoveries of structural & functional abnormalities of urogenital system in some DES sons (epididymal cysts, hypotrophic testes, cryptorchidism) • Inconsistent findings on risks for infertility, testicular cancer
  • 4. Scope of Research on DES Sons • Latest DES sons study of cancer outcomes suggested little or no increased risk for most cancers in DES sons (Strohsnitter, 2001) • No identified increase in prostate cancer in DES sons so far • Immune system effects still under investigation • Psychiatric effects (major depressive disorder, psychoses, schizophrenia). • First studies of psychosexual effects published in 1970s (Continued)
  • 5. DES Research Update – NCI Web Site http://searchosp1.nci.nih.gov/whealth/DES/index.html
  • 6. DES Research Update Conference, 1999 (NCI, NIEHS, NIH) • Last conference held in U.S. discussing available and needed research on human health effects of DES exposure, July 19-20, 1999 • Recognizes inadequacy of existing research on DES sons, “basic and clinical research on DES sons should be a top priority in policy discussions.” • Recommends further research on cancer and infertility issues of DES sons • Finding: More women than men are aware of DES and of their possible exposure • Finding: The full range of effects for all DES children, especially DES sons, is unknown
  • 8. The DES Sons International Network Mission and History • Organized as DES Sons Online Discussion Network in 1999 with emphasis on global outreach to DES sons • Mission: Education, advocacy, research on DES sons’ adverse health effects, group support, monitoring published research on DES and endocrine disruptors • Goals: To encourage more primary research with DES sons and to investigate unanswered questions about the scope of impact • Membership reach: Between 1999 and 2004, over 500 individuals with confirmed or suspected DES exposure
  • 9. The DES Sons International Network Scope of Outreach • Global reach: International online outreach to locate DES sons from Australia, Canada, Europe (especially United Kingdom, France, Belgium), and U.S. • Emphasis: Promote greater awareness about the significance of DES exposure in ongoing international research investigating effects of endocrine disruptors on human health and behaviour • Sources of outreach: Online and print publications focusing on human health effects of DES; announcements in online reproductive health networks • Peer outreach: Network members provide further outreach
  • 10. DES Sons International Network Research 1999-2004 • Purpose of study: Response to calls for further research on DES sons, using online environment to inspire discussions of health issues among DES sons from around the world • Study format: Conceptualized as an online focus group of DES sons recruited from a variety of DES information and reproductive health information online networks • Research methods: Qualitative analysis using grounded theory, online interviews, membership surveys, polls, private discussions, threaded discussion topics • Participant screening: Prospective members screened for confirmation or likelihood of prenatal DES exposure
  • 11. DES Sons International Network Research 1999-2004 • Principal reported health concerns: endocrine (hypogonadism); mental health (depression/anxiety); gender identity/sexuality • Additional reported effects (less frequent): epididymal cysts; cryptorchidism; autoimmune disorders; infertility; ambiguous genitalia • Low reported cancer prevalence: five reports of history of testicular cancer in earlier years; no other cancers • One-quarter to one-third of members self-identify as transsexual, transgender, or intersex (Continued)
  • 12. DES Sons International Network Next Steps, 2005 and Beyond • Continuing international outreach to expand membership and future research participation • Strengthening affiliations with international research networks devoted to male reproductive health and endocrine disruptors • Widening public awareness about the “invisible harm” from endocrine disruption in males • Collaborating with Dr. Milton Diamond, University of Hawaii, in administering follow-up survey for DES sons focusing on gender and sexual health issues
  • 13. Pacific Center for Sex and Society – Web Site
  • 14. The Presence of Gender Dysphoria, Transsexualism, and Disorders of Sexual Differentiation in Males Prenatally Exposed to Diethylstilbestrol: Initial Evidence from a 5-Year Study DES Sons International Network: http://health.groups.yahoo.com/group/des-sons Contact: des-sons-owner@yahoogroups.com