I. DES Basics
* DES was given to women between the mid 1940s and early 1970s for the prevention of miscarriage. Previously, it was also given to women in the U.S. to treat other gynecologic problems and probably was given "off label" to prevent miscarriage years before the FDA approved it for such purposes.
* It is estimated that up to 5 million mothers were given DES in the U.S. during this period, though no records exist to confirm the exact numbers exposed or the range of dosages that were administered to different women in different locations.
* The numbers of exposed DES offspring (sons and daughters) born during the period of late 1940s to early 1970s has been estimated at approximately 1-3 million sons and 1-3 million daughters, though exact figures inside or beyond the U.S. have never been confirmed.
* DES was most popular during the early 1950s, when nearly one in ten pregnant mothers were treated with the drug, some of whom had no history of previous birth complications.
* The first published studies of DES to demonstrate that it had no therapeutic value for preventing miscarriage were released during 1952-53, but the drug remained on the market in the U.S. for nearly 20 more years.
* In 1971, the FDA announced that DES was "contraindicated" for pregnant women after the first cases of clear cell cancer in DES daughters were diagnosed.
* It is estimated that approximately half of exposed DES offspring have never been told of their exposure, by parents or doctors.
II. Previous Research on DES Offspring
* Following the first reports of cancer among DES daughters (1970/71), most public funding for research on the long-term health effects of DES exposure in offspring came from the National Cancer Institute, and greatest emphasis was upon assessing cancer risk in DES daughters through development of cohort tracking studies of DES
daughters, mothers, and smaller numbers of DES sons. Cancer risk in DES daughters remained the most prominent public health concern regarding DES exposure well into the 1990s.
* Research on other adverse effects of DES exposure in daughters and sons has been published, but typically has been given much less funding support and much less public attention. Both DES daughters and DES sons have reportedly suffered immune system problems, increased incidences of depression and anxiety disorders,
infertility, and malformations in their reproductive systems.
* Among all reported adverse effects of prenatal DES exposure, the only condition for which risk factors have been quantified (i.e. predictions of likelihood of adverse reaction) is vaginal (clear cell) cancer in women (approximately 1/1000 chance). No statistical risk factors on non-cancerous outcomes have ever been developed for
sons or daughters.
* Research investigating possible neurobehavioral effects of prenatal DES exposure has existed since the 1970s, but has tended to be downplayed in comparison with reported cancer-related outcomes. Reinisch, Davis, and Sanders in 1991 reported in their meta-analytic study that prenatal DES exposure appeared to have a feminizing and demasculinizing effect in males and a masculinizing and defeminizing effect in females.
* Psychosexual effects of DES exposure have been suspected in research stemming from the 1970s. In 1995, Meyer-Bahlburg et al. published research measuring increased likelihood of lesbianism and bisexuality among DES daughters. Single-case research documenting intersex conditions in DES sons and DES daughters appeared in published literature as early as 1959.
* First studies documenting psychiatric effects of prenatal DES exposure in males were produced in the early 1980s and several studies since then have documented depression, anxiety, and psychoses in DES sons.
III. Scott Kerlin's DES Sons Research Summary, 1999-2004
* Online study of DES sons (individuals with confirmed or strongly suspected prenatal DES exposure) from around the world, conducted from 1999-2004 (five year study to establish baseline of documented adverse health effects)
* Total sample of participating DES sons included in the study was 500 individuals (46xy).
* Findings from full study include documentation of most commonly reported health effects for DES sons: Hormonal/endocrine health issues, especially hypogonadism; Psychological and mental health concerns including depression and anxiety disorders; Gender identity disorders and sexual health concerns
* Additional reported health effects by a number of DES sons: Autoimmune disorders, Infertility; Reproductive tract abnormalities such as hypospadias, epididymal cysts, cryptorchidism, ambiguous or underdeveloped genitalia
* History of testicular cancer reported by only 5 individuals
* Significant incidence of reported incidences of gender dysphoria among DES sons, with somewhere between one-fourth and one-third of members reporting a history of gender-related concerns and/or transsexualism
* Significant prevalence of gay, bisexual, transgendered, transsexual, and intersex individuals among network members.
