Diethylstilbestrol: Intergenerational Impact

Debate between Jessica Toale and Ellie Chowns

Monday 29th June 2026 Commons Chamber

[Jessica Toale]

It was a pleasure to meet Heather today, along with all the other campaigners. I thank them all for having shown such strength in coming forward to share their stories.

One of the cruellest impacts of DES, which sets it apart from other medical scandals, is that its consequences do not stop with the women who were prescribed it or their immediate children. There is growing evidence of intergenerational impacts affecting grandchildren, and possibly beyond. We do not yet know how far those consequences reach. That uncertainty is part of the harm that the families face.

Research suggests that women who took DES during pregnancy—the DES mothers—may face around a 30% higher chance of breast cancer. Female babies exposed in the womb—DES daughters—have around 40 times the risk of developing clear cell adenocarcinoma of the vagina and cervix. They also face increased risks of reproductive complications, including infertility, ectopic pregnancies, premature births and a range of other conditions and complications that we are learning about all the time.

Clare, who is in the Gallery today, described being robbed of her fertility and suffering ovarian failure, and later developing an autoimmune inflammatory condition. At the age of 18, Juliette, who is also with us, was rushed to A&E with severe haemorrhaging after a reaction to the contraceptive pill, and she has stage 4 endometriosis. Anne-Marie, who is also with us, was taken off the pill due to stroke risk and has described being housebound due to the gynaecological issues she has faced. Many of them describe managing complex hormonal challenges and, later in life, debilitating menopausal symptoms. That is a common experience for a lot of these women.

[Dr Ellie Chowns (North Herefordshire) (Green)]

I thank the hon. Member for securing this really important debate. One of my constituents, who is a DES daughter, came to see me, and she reported that her mother’s health records were lost when her GP moved back in the 1970s. Does the hon. Member share my concern that a key issue here is that the lack of effective recordkeeping and the loss or destruction of records over time make it harder and harder to trace causal effects? Does she agree that we want to hear from the Minister what allowances will be made for this record-keeping issue in addressing the long-term impacts of DES on those daughters and grandchildren?

[Jessica Toale]

Of course. Recordkeeping is one of the issues we face as a campaign group. I know the Department of Health and Social Care is looking at that, and I will come on to that issue later in my remarks.

Limited studies have been done on DES sons, but they suggest that these men face an increased risk of genital abnormalities and infertility. In May 2026, Maxwell Samuda became the first man to speak out openly about the effects of the scandal on him and his family, and I pay tribute to him. There are serious, unresolved questions about the second and third generations—the grandchildren. That is important, because this is not history or a scandal of the past; it is live and a continuing injustice to these women and their families.

People affected by DES are still living with the consequences today. Some are discovering later in life that health problems they have endured for decades may be connected to a drug that their mother took and was prescribed before they were born. Those who suspect DES exposure often find that doctors, clinicians and the wider health system have little or no awareness of it. That really matters, because for too many DES survivors, the harm has been compounded by the disbelief that they face. They have been told that their symptoms are unrelated and not to worry. They have been sent away, ignored, dismissed or left to piece the evidence together for themselves. Anne-Marie, who is here today, said that she had to buy her own medical encyclopaedia just to find out what was wrong with her.

Sadly, that is part of a much wider pattern that we see in women’s health, which has been poorly understood for generations and continues to be poorly understood today. Women’s pain is too often minimised. Their symptoms are normalised or ignored. Reproductive health is often treated as something that is niche, too complicated, embarrassing or somehow secondary, and it is not given the seriousness that it deserves. Women are not listened to and their concerns are dismissed until the evidence is too impossible to ignore. The history and present experience of DES is part of that wider system and failure, and, even now, we do not have the systems in place to properly support those affected.

One of the most worrying examples of that is in screening. Current routine smear testing for cervical cancer is designed primarily to deal with and detect changes linked to HPV. It does not reliably detect clear cell adenocarcinoma—the rare cancer associated with DES exposure. That means many DES daughters may believe that they are being adequately screened, but in fact the very cancers for which they have an increased risk will not be picked up through the standard process. Crucially, they need access to advanced screening for a much longer span of years than most women do.

A truly heartbreaking experience of that was the experience of Charly, who is in the Gallery today. She is a DES daughter and was diagnosed with clear cell adenocarcinoma in her cervix and uterus at the age of eight; she was given a hysterectomy at the age of nine. We know that standard breast cancer screening does not pick things up and is not adequate for women who face DES exposure.

Many women bear not only the emotional burden of uncertainty because of DES, but a financial burden, self-funding annual scans as a precautionary measure and undertaking fertility treatments. Today, in the meeting with the Minister, Juliette described the range of tests she undergoes every year at large personal expense and the lack of fairness for people who cannot afford to do so. That is unacceptable, which is why targeted screening and specialist monitoring for those at risk is so important. People who are affected need accurate information, proper care, and the chance of early diagnosis.

When I first heard Jan’s story, I had to act, and as a nation, we have a unique responsibility to act.