US Government Information Links
Last updated May 2025
Each time we try to access information sources we’ve depended upon for decades, we find fewer are being maintained and some are disappearing. We will do our best to keep what archived information we can, but do not assume these links are all up to date.
Centers for Disease Control’s (CDC): DES Update
This is an archived link to the CDC website page (taken down in April 2021), with extensive, downloadable information for consumers and health care professionals. However, it had not been updated for several years with the latest research on breast cancer, cardiovascular concerns, and DES Grandchild issues.
National Cancer Institute (NCI): DES Follow-up Study
Since 1992, the NCI, in collaboration with research centers throughout the United States, has been conducting an ongoing study of more than 21,000 DES-exposed Mothers, Daughters, and Sons. The study was expanded in 2000 to include a questionnaire for DES Granddaughters. This website was updated regularly with links to research reports about DES exposure, which make fascinating reading. Active updating ended in 2023, with one post since then.
National Institute of Environmental Health Sciences (NIEHS): DES Study
The NIEHS has links to reports that include information about DES, not only related to cancer but to the drug’s many other effects as an endocrine disruptor.
NIEHS Partners
As a member of the NIEHS Public Interest Partners, DES Action participates monthly in discussions about environmental and health research with NIEHS staff members and representatives from other organizations. This site lists our colleagues with links to their websites.
Office of Research on Women’s Health (ORWH)
In 2011, the ORWH compiled a complete rundown of US government DES studies through the years.
The Registry for Research on Hormonal Transplacental Carcinogenesis
The University of Chicago has an international research registry specifically for women diagnosed with clear cell adenocarcinoma of the vagina or cervix. However, please check the site if you are a DES Daughter with a diagnosis of reproductive cancer to see if it should be registered to aid in DES research. Registry criteria and information for registering are located on their Frequently Asked Questions page.
US Preventive Services Task Force (USPSTF): Cervical Cancer Screening Guidelines
The USPSTF is an independent, volunteer panel of national experts in prevention and evidence-based medicine. Each year, the Task Force reports to Congress. The USPSTF recommends guidelines that doctors use to determine screening types and intervals for their patients related to specific health conditions.
NIH National Cancer Institute (NCI): DES Exposure and Cancer
The NCI is a comprehensive source for all cancer-related issues. It has a page devoted to DES information, historical and current, with links to the relevant published research.
DES Action Archival Records
The Sophia Smith Collection of Women’s History is a part of the Smith College Special Collections and contains the following records:
- DES Action, USA records
- DES Action, Connecticut records
Websites On Medical Issues, Endocrine Disruption, and Environmental Health
This website is full of information about health issues, with an emphasis on side effects from drugs and other medical interventions. MedShadow Foundation is the parent organization of both DES Action USA and MedShadow.
Also known as the Boston Women’s Health Collective, the OBOS is an online general resource with information about women’s health, sexuality, and reproduction. The chapter on DES that had been in the book has been cut. However, Breast Cancer Action (BCA), a group that arose out of DES Action, has donated their information to OBOS website.
This site provides a daily rundown of national and international environmental health news for easy access to current research exploring environmental links to disease.
Related Health Organizations (not DES-specific)
Silent Spring Institute works to identify and break the links between environmental chemicals and women’s health conditions with a focus on breast cancer.
Disability Benefits Help is an independent organization dedicated to assisting people of all ages in obtaining Social Security disability benefits. They help answer questions on how to qualify for disability benefits with a cervical cancer diagnosis.
Blogs and Blog Posts
Many in the DES community are writing blogs. Because these are personal tales based on life experiences and the knowledge base of individual authors, DES Action does not endorse blogs for accuracy. However, their stories help share the DES experience while furthering readers’ understanding of the many consequences of DES exposure.
Here are some interesting websites:
Journal of a DES Daughter is written by a DES Daughter born in 1971 in France but who now lives in the UK. Her beautifully written and illustrated posts highlight the international impact of the DES tragedy.
A DES Daughter’s Blog is the “little sister” of the blog mentioned above blog but with a focus on social media and networking. This site features and displays the networks of existing DES groups and individuals who have an online social media presence aimed at raising DES awareness.
DES: A Story of Doctors Not Knowing Best highlights DES Mothers and Daughters in this blog post on the Our Bodies Ourselves website. It was written by Susan Bell, from Bowdoin College, and describes the importance of DES advocacy on grassroots women’s health activism.
The Pump Handle is a respected public health blog that zeroes in on the DES experience in a post titled: Public Health Classic: DES Daughters.
DES in Media
The Lou Grant Show had an episode (season 3, episode 17) about DES, titled “Inheritance,” which aired on CBS-TV in the early 1980s.
A Healthy Baby Girl first aired in 1997 (on PBS-TV). This emotional video shared the raw emotions of Judith Helfand and her family as they struggled through her diagnosis of and treatment for DES-related cancer and how the experience turned her to a life of activism. This was the first documentary to bring national attention to the DES issue. It is available for viewing now on iTunes, PBS.org, or the PBS Video app.
Cancer Research Now: The DES Story, Lessons Learned is a five-minute video by the National Cancer Institute DES Follow-up Study principal investigator Dr. Robert Hoover filmed in October 2011. Dr. Hoover describes the history behind DES and the long-term health effects now known to be associated with prenatal exposure to the drug.
DES Song 2014 is a haunting song created by a DES Grandson using a poem by his mother, a DES Action USA member. “Is the money well worth the damage you’ve done? . . . Think the next time you’re out playing golf, cruising your beamer, or riding your horse, all of your money and ill-gotten gain came at a great price, DES is the name.”
Law & Order: Criminal Intent, Season 5, Episode 1 “Grow”
20th Century Women is a 2016 film set in 1979 that features a DES Daughter who develops cervical cancer.
Listserv Options
DES Action DES Daughters Online Support Group
Listserv participants discuss common issues, experiences, and suggestions in a supportive and caring group by way of email messages. If you would like to participate and are a DES daughter (or believe yourself to me) please email info@DESAction.org and request membership to the DES Daughters Online Support Group.
DES Action DES Men’s Online Support Group (For DES Sons and DES Grandsons)
Listserv participants discuss common issues, experiences, and suggestions in a supportive and caring group through email messages. If you would like to participate and are a man with a history of in utero DES exposure (either directly in utero or through a grandparent) or believe yourself to be otherwise exposed to DES, please email info@DESAction.org and request membership to the DES Men’s Online Support Group.
References
DES Update Home. Centers for Disease Control archived website.
The NCI DES Follow-up Study. National Institutes of Health: National Cancer Institute website.
Site Search: Diethylstilbestrol (DES). National Institutes of Health: National Institute of Environmental Health Sciences website search page.
NIEHS Partners: Working with a Coalition of Environmental Health Organizations that Support the NIEHS Mission. National Institutes of Health: National Institute of Environmental Health Sciences website.
About ORWH. National Institutes of Health website.
Cervical Cancer: Screening. U.S. Preventive Services Task Force website.
Diethylstilbestrol (DES) Exposure and Cancer. National Institutes of Health: National Cancer Institute website.
DES Exposure: Questions and Answers. American Cancer Society website.
Sophia Smith Collection of Women’s History. Smith College Libraries website.
DES Action USA records. Smith College Libraries website.
DES Action, Connecticut records. Smith College Libraries website.
MedShadow. MedShadow Foundation website.
Our Bodies, Our Selves, 1971. Our Bodies Ourselves website.
The Nine U.S. Editions. Our Bodies Ourselves website.
EHN: Environmental Health News. Environmental Health News website.
Silent Spring Institute. Silent Spring Institute website.
Cervical Cancer and Social Security Benefits. Disability Benefits Help website.
Diethylstilbestrol, Journal of a DES Daughter. Diethylstilbestrol DES website.
A DES Daughter’s Blog. DES Daughter website.
DES: A Story of Doctors Not Knowing Best. Our Bodies Ourselves website.
Public Health Classic: DES Daughters. ScienceBlogs website.
Lou Grant S03E17 Inheritance. YouTube website.
A Healthy Baby Girl. Public Broadcasting Service website.
The DES Story: Lessons Learned. National Institutes of Health: National Cancer Institute Division of Cancer Epidemiology & Genetics website.
20th Century Women. Wikipedia website.