Members Area

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New Doctors List

Find a searchable list of DES-aware doctors throughout the US on new search directory here.

Old Doctors List

Find a searchable list of DES-aware doctors throughout the US here.

Attorneys

Find attorneys who have handled DES-related lawsuits here.

Video Interviews

Watch our monthly interviews with DES leaders here.

Voice Archive

You can find all back issues of the VOICE here.

Your Member History

View your payment history here. (Note: We were not able to transfer all 30 years of data from old database to our present database. So if you have been a member for many years and you don’t see your donation history please let us know, so that we may write a note in your record.)

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Join the DES Daughters Discussion Group

To subscribe to the members only Groups.io discussion group, send an email to: [email protected].  Please use the email you use to log in to DES Action so that we can quickly OK your membership to this discussion/support group.

Join the DES Men’s Discussion Group

To subscribe to this members-only Google Group, send an email to:
[email protected]. Please use the email you use to log in to DES Action so that we can quickly OK your group membership.

DES Action Research Meeting 2021

DES Action Research Meeting 2021

Beyond Genes: The Online Conference on Non-Genetic Inheritance in Human Disease

Beyond Genes: The Online Conference on Non-Genetic Inheritance in Human Disease

December 4, 2020’s program “Heritable Impacts of Diethylstilbestrol (DES)”

1) Results and Signals from the Ongoing NCI Multi-Generational DES Follow-up Study
• Linda Titus, PhD, Dartmouth Geisel School of Medicine

2) DES Exposure During Pregnancy and Third-Generation Neurodevelopmental Deficits
• Marianthi Kioumourtzoglou, ScD, Columbia University

3)followed by interactive discussion of DES grandchild effects, including:

• Subhrangsu S. Mandal, PhD, University of Texas at Arlington
• Kari Christianson, MedShadow, and former research director, DES Action USA
• Scott Kerlin, PhD, independent researcher
• Michel Tournaire, MD

For abstracts, please visit https://www.beyondgenes.org/session-5

For Su Robotti, DES Action’s Executive Director’s article about the conference in the journal Biology of Reproduction, DOI: 10.1093/biolre/ioab146 “The Heritable Legacy of Diethylstilbestrol: A Bellwether for Endocrine Disruption in Humans”.

DES: A population health tragedy

Presenters at the Symposium in Boston on March 1, 2017 (left to right):
Kari Christiansen, NIH National Cancer Institute DES Follow-up Study Steering Committee The history of DES, DES Action USA; Linda Titus, Sci, D. Associate Director of the Hood Center for Children and Families Recent and ongoing research on DES, 3rd generation, what we might expect in the future; David J. Fine Attorney, of Council, Rubin Hays, PC DES Changing the law, how the law applies in reproductive health issues; Suzanne Robotti DES daughter, Executive Director DES Action, USA, founder MedShadow Foundation It’s not just DES

A Letter from Dr. Jacquelyne Luce About the Study

Jacquelyne Luce, PhD
Principal Investigator and Lecturer in Gender Studies
Department of Gender Studies
Mount Holyoke College

How has your exposure to DES shaped your understanding of gender, sex, and sexuality? With a grant from DES Action USA, I am conducting a new research project exploring the relationships between people’s experiences of gender, sex, sexuality, and sexual orientation and their experiences of the physical and psychological effects of being DES-exposed.

This is an area of study that has not received much prior attention.

Most members of the DESexposed second generation would have reached puberty between 1960 and 1985, a time of both very strong societal ideas about femininity and masculinity, as well as increasing resistance to expectations about what it means to be a woman or man.

New ideas about sex hormones and techniques of genital surgery also emerged during this time period, shaping various fields of intersex and transgender health. The third generation of DES-exposed people is likely to have been born anytime between 1975 and now, experiencing life in a world of both rigid and fluid ideas about gender, sex and sexuality.

My work as a researcher involves seeking out and listening intensely to people’s stories about their experiences of the body, health, disability and difference, and situating these within local and global developments in science and medicine.

I wonder: How can members of the DES-exposed communities, who lived through the forefront of the women’s rights movement, the LGBT rights movement, and the Intersex rights movement, contribute to our understandings of the relationship between bodies and identity? How can the stories of this community help us to better understand the historical ongoing health, advocacy, and research needs of LGBTIQ and gender non-conforming DESexposed people?

We will conduct interviews by phone and video conference, recording these with permission. We will anonymize everyone who shares their story in order to protect privacy. These interviews will be like open-ended conversations.

We are not looking for any particular “answer.” Instead, participants will help us shape our research, and the larger themes we explore.

We will be sharing the ongoing thoughts that emerge from this research with the DES-exposed community. If you would like to receive more information about the project please contact jluce[@]mtholyoke.edu.

The Complete Report

Dr. Luce’s Final Report of the study: Embodying Transgenerational Exposure: Gender/sex/sexuality and experiences of being DES-exposed (pdf).

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