Controversial DES pregnancy drug taken by millions under scrutiny in new study
Warning: This article contains discussion of baby loss which some readers may find distressing.
The Department of Health has commissioned a major new study into the long-term impact of the controversial pregnancy drug DES, decades after millions of women around the world were prescribed it and years after it was linked to serious health problems.
Diethylstilbestrol, better known as DES, was given to an estimated 300,000 women on the NHS between the late 1930s and the 1980s.
It was prescribed to help prevent miscarriage and treat pregnancy complications, but later became linked to rare cancers, infertility and a range of reproductive health issues in the daughters of women who took it.
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The research, which will be carried out by researchers at Exeter University, follows an ITV News investigation into years of failures by health authorities to properly monitor and support people affected by the drug.
The project is expected to take at least six months and forms part of a systematic review examining the long-term physical and mental health effects of DES across multiple generations.
Researchers are now looking for people whose families have been affected by the drug, including women who took DES during pregnancy, as well as their children, grandchildren and great-grandchildren.
Participants who take part in the study will receive £28.
According to a leaflet shared with DES campaigners, 'the people exposed to DES before birth may have a higher risk of some health problems, and it may also affect later generations'.
Researchers added: "This study will help provide a clearer and more up-to-date understanding of the long-term impact of DES."
Alongside the research, NHS England has also established a specialist DES advisory group made up of senior clinicians.
The group will work to improve treatment pathways for patients and increase awareness among frontline healthcare professionals about the drug's intergenerational effects.
The advisory group, which includes Patient Safety Commissioner Henrietta Hughes, will also explore whether people exposed to DES should receive lifelong cancer screening, something already offered in countries including the Netherlands.
Hughes said: "What we've seen in other countries is that centres of excellence have been established where there is routine screening and monitoring of people who've been exposed to DES; that's what I would like to see happen here.
"We need a real join-up in the system so that gynaecologists, cancer specialists and also those dealing with the psychological aspects are all brought together in one place."
DES was once promoted as a breakthrough treatment for preventing miscarriage and was prescribed to millions of pregnant women worldwide, per DES Mothers, before concerns over its safety emerged.
Research has since suggested women who took DES while pregnant may face a 30 per cent higher risk of breast cancer.
Their daughters are also around 40 times more likely to develop clear cell adenocarcinoma of the cervix and vagina, a rare but aggressive form of cancer.
Many families affected by DES say the new study is long overdue, with some continuing to live with lifelong health complications linked to prenatal exposure.
Patient Safety Commissioner Hughes also drew comparisons with other major medical scandals involving medicines prescribed during pregnancy.
"I think this is one of the great scandals that we have in our health system that the years roll by," she told ITV News.
"The health system doesn't listen, the government doesn't act. Patients may experience cancer, they may experience other harm and may die waiting to get an answer. I think that's totally unacceptable."
The study follows a government apology issued in November 2025, when ministers acknowledged that 'the state got this wrong' after years of campaigning by families affected by DES.
Campaigners hope the research will finally provide a clearer picture of the drug's lasting impact, while highlighting gaps in current evidence that could shape future healthcare and support for generations still living with the consequences of exposure.
A spokesperson for the Department of Health and Social Care said: "The effects of DES are still being felt across generations, yet for too long health professionals were unaware of its impacts and the support that should be available to those exposed. But that is now changing under this government.
"We are working with local Cancer Alliances to ensure every NHS clinician is alive to the impact of DES and the associated screening guidance, and we have commissioned a systematic evidence review on the intergenerational effects of DES, to help strengthen support for those impacted."
If you need support and advice following a pregnancy loss, you can contact the Tommy’s team at [email protected]. You can also call them for free on 0800 014 7800, Monday to Friday, 9am to 5pm.
Topics: Pregnancy, Women's Health, Health
Rhiannon Ingle