The DES Research Update 1999 Conference
by Sally Keely, DES Action Board Member

The DES Research Update 1999: Current Knowledge, Future Directions Conference was held in Bethesda, Maryland last month. Sponsored by the National Institutes of Health, the Centers for Disease Control, and the Public Health Service Office of Women's Health, this meeting was a sequel to the 1992 NIH Workshop on Long-Term Effects of Exposure to DES. Congresswoman Louise Slaughter, co-sponsor of the DES legislation signed into law last October, gave opening remarks.

Research overviews were presented by Arthur Herbst M.D., Robert Hoover M.D., Retha Newbold, and Deborah Wingard, Ph.D. Dr. Herbst, who discovered the link between DES in-utero exposure and clear cell cancer in 1971, updated us on the clear cell adenocarcinoma registry statistics. There are now 715 women included (62% of whom have documented DES exposure), with an age range of 7-48 at time of diagnosis. He noted that there are more cases in the 40-46 age group than the 35-39 age group, suggesting a possible second peak of incidence of clear cell adenocarcinoma.

Dr. Hoover, Director of Epidemiology at NCI, presented some of the current health implications of DES exposure. The only studied risk to moms is a 30% increased risk of breast cancer. No new information on daughters, but he did stress that we need to continue to study the incidence of breast cancer as we age. As for DES sons, he reported that some studies show significantly increased risk of testicular cancer and others show increased risk but not significantly. No studies have shown significantly increased infertility in sons. He reported that questions on 51 potential auto-immune disorders have been included in the DESAD cohort questionnaires. Significant differences have been seen between exposed and non-exposed for the following disease: 5-fold risk of Hashimotos thyroiditis, 3-fold risk of pernicious anemia, and 3-fold risk of rheumatoid arthritis.

Ms. Newbold, Head of the Endocrinology Section of the Toxicology Lab at the National Institute of Environmental Health Sciences, spoke about the latest mouse studies. As we have reported in recent issues of the VOICE, 3rd generation DES exposed mice (DES-grandchildren) have an increased occurrence of tumors, but no problems with fertility.

Dr. Wingard, Professor at the University of California at San Diego, spoke about education and outreach. A recent questionnaire showed that only half of ob/gyns knew that ectopic pregnancies and miscarriages could be related to DES exposure and only 11-21% knew that women who took DES are at increased risk of breast cancer. Clearly, the need for continued education of medical professionals is vital.

Four breakout sessions presented a unique opportunity for researchers, medical professionals, legislators, public health officials, consumer advocates, and DES exposed persons to come together and share concerns. Breakout topics included clinical research, epidemiology, basic research, and education/outreach. The goal of each session was to establish the two most important DES issues, thus making eight issues when we reconvened. I was intrigued at how much commonality there was among the groups and participants. Major concerns included the following:

• further study needed on ramifications to DES sons and the 3rd generation,
• continued follow-up of the established cohorts (groups of mothers, daughters, and sons currently being studied),
• concerns about other hormone exposure such as hormone replacement drugs, fertility drugs, and oral contraceptives,
• establishing biomarkers that could measure exposure and genetic effects,
• coordinating education efforts, and
• disseminating information to providers and consumers.

Between sessions, attendees perused about 20 posters describing various research studies. Researchers were available for questions. Some of the posters were previews of papers expected to be published in the near future. Watch the VOICE for reviews!

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