Closing Remarks, DES Research Update 1999: Current Knowledge, Future Directions

VI. Closing Remarks

Carol Rubin, D.V.M., M.P.H., National Center for Environmental Health, CDC, offered closing remarks about the DES Workshop and thoughts on future directions for the DES community. Dr. Rubin reiterated Dr. Jones' comments at the outset of the meeting that the 1999 DES Workshop provided consumers, researchers, advocates, and health care providers an opportunity to come together to reflect upon the early history of DES, gain an understanding of how that early knowledge was applied, and be updated on the current state of DES research and education. In addition, workshop attendees were charged with developing future directions and research priorities for DES research and education.

Congresswoman Slaughter, who has championed DES legislation for more than a decade, was one of the primary sponsors of the 1998 Women's Health Research Legislation. In her presentation, Dr. Rubin noted, Congresswoman Slaughter made it clear that the DES portion of that legislation resulted from the extensive work of the entire DES community. Further, DES research and education will continue because of the ongoing, concerted, focused efforts of those in the community. Important to those efforts is the education of policy makers, which will help ensure that DES does not mistakenly become viewed as a solely historic issue. And, as Congresswoman Slaughter and others pointed out, results of DES research extend beyond the DES community through its insights into how synthetic estrogens impact human health and how exposure to environmental estrogens may affect human reproductive health. DES research also appears to be uncovering clues as to how genetic predispositions may interact with those exposures.

Regarding ongoing DES education efforts, the recent Women's Health Legislation clearly states that the NCI will contract with CDC to provide a National DES Educational Campaign to target both consumers and health professionals. The legislation mandates that the planning and implementation of the national educational campaign be undertaken in consultation with organizations that represent all affected individuals, including DES mothers, children and grandchildren, and their families. The responsibility for this legislative mandate is being transferred to CDC. NCI and CDC staff have met, and will continue to meet, to ensure that the transition is a success and fulfills the intent of the legislation. A preliminary plan for the national campaign has been outlined, and adequate funding of this program will be required so that the program is carried out in the manner intended by Congress.

Dr. Rubin continued by explaining that CDC consists of a series of centers, each of which addresses a different aspect of public health. The NIH and its institutes, on the other hand, focus more on basic research efforts. CDC operates as a nonregulatory, public health agency that responds to public health requests for investigation, evaluation, interventions, and prevention of problems that range from chronic diseases to emerging infectious diseases. Dr. Rubin is associated with CDC's National Center for Environmental Health, which became involved with DES research because of the Center's work on environmental chemicals that can act as estrogens and affect human health.

In late fall 1998, CDC was asked to respond to the question of whether a government-sponsored registry of DES-exposed persons would be a valid public health program. Specifically, she noted, CDC was asked about the possible role of the National DES Educational Campaign to create, recruit to, and/or maintain such a registry. To investigate these questions, CDC convened a working meeting in Atlanta that included representatives from DES Action, the DES Cancer Network, the pilot educational projects, NCI, and individuals with expertise in both exposure and disease registries. The findings from this meeting have been compiled in a report, "The Diethylstilbestrol Exposure Registry Workshop," available from CDC. The report, including the group's consensus recommendations, was presented to the US PHS OWH and the DHHS.

The clear consensus of the group was that there was no useful purpose in creating an additional exposure registry at this time. The existing cohorts and registry appear to provide the best approach to capturing the scientific information needed to translate into optimal clinical practices for DES-exposed persons. The group did recognize the frustration expressed by many DES-exposed persons who are not enrolled in any DES cohort study, however. As discussed throughout the DES Workshop, the current DES cohorts should continue to be studied and, where deemed necessary or appropriate, combined. Future research should be directed toward studying the impact of DES exposure on the third generation, the DES grandchildren; the effects of other hormone exposures on DES-exposed persons; the changes accompanying menopause in DES daughters; and the noncancer effects associated with DES exposure.

The group that convened in Atlanta agreed that the National DES Educational Campaign is a high priority. It was recommended that the campaign be targeted toward three primary groups: women and men who know or suspect that they were exposed to DES, those who are not sure of their exposure status but were born during the years that DES was prescribed, and health care providers (primary care physicians, ob/gyns, midwives, urologists, infertility specialists, and others). The American Medical Association (AMA) recently contacted CDC regarding participating and/or partnering in this campaign.

The DES educational effort mandated by Congress is still in the early planning and defining stages. CDC recognizes NCI's and others' efforts during the past decade to identify the best educational and outreach strategies to conduct a national campaign. CDC will continue to build upon those efforts and to listen carefully to the recommendations for a successful national educational program put forth in the current meeting. The agency realizes that the foundation of this campaign is the extensive network of consumer advocates and the information exchange exemplified by those attending this workshop, including laboratory researchers, epidemiologists, clinicians, and advocates. In brief, the science that serves people should be communicated with a common goal in mind, as demonstrated in this 1 and 1/2 day meeting.

Dr. Rubin closed her talk by stating that the recommendations from the 1999 DES Workshop send a clear message to researchers, policy makers, and funding institutions on the importance and relevance of continued DES research and education.