Diethylstilbestrol: Intergenerational Impact

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.

That co-ordinated campaigning has paid off. In September, the MHRA admitted that it had made inaccurate statements for up to 25 years about when DES was withdrawn in Britain and apologised. In November, the former Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), acknowledged the suffering of DES-affected families and apologised. This was a huge step; it was the first time that many campaigners felt that the state had begun to recognise what had happened to them. That apology matters, but it cannot be the end of the matter, because for people like Jan—who has campaigned for more than 40 years—there must now be action.

The DES Justice campaign is calling for the Government to take five clear steps. The first of those steps is to commit to uncovering the truth about what happened, including through a full, judge-led statutory inquiry. The second is to support research into the long-term and intergenerational effects of DES; the third is to raise awareness of DES among NHS professionals; the fourth is to assess the feasibility of tracking and informing those potentially exposed to DES; and the fifth is to introduce targeted screening and monitoring for those at risk.

Those asks are reasonable, practical and necessary, because while some progress has been made, it remains nowhere near enough. We need updated and accurate information on the NHS website, so that people searching for DES are not left confused, frightened, or dependent on campaign groups for basic fasts. We need better information flows to GPs, gynaecologists, oncologists, fertility specialists and other NHS professionals. We need DES to be included in medical training and continuing professional development, so that clinicians know what it is, what the risks are, and how to support people who have been exposed. We need clear guidance on screening and monitoring, especially given the limitations of routine smear testing.

We also need a serious effort to understand whether and how those at risk can be identified, and those affected informed. I recognise that this is difficult—many of the records are old, and some have been lost or destroyed or were never kept properly. Some people will not know whether their mothers took DES, and some mothers may no longer be alive to be asked, but difficulty cannot be an excuse for inaction.

There are people who may be at risk today and do not know it. There are women who believe they are protected by the smear test, but they need specialist monitoring. There are families living with unexplained patterns of gynaecological problems—infertility, pregnancy loss or cancer—without even ever knowing that DES could be part of the picture.

I close by paying tribute again to my constituent Jan, whose courage and determination brought this issue to my attention. She has kept campaigning not just for herself, but for every family affected by DES. I pay tribute to every DES mother, daughter, son and grandchild, and every family member who has fought for recognition. They deserve justice, and they deserve answers and to know what happened to them. They deserve to be supported by the very health system that failed them. If anyone listening to this debate thinks that they, their mother, their grandmother or someone they know may have been affected by DES, I urge them to seek further information from the DES Justice campaign or to contact my office. This Government have an opportunity to listen, to act and to begin putting right one of the greatest medical injustices of our time. I urge the Minister to take that opportunity today.

We have taken action to raise awareness of DES among health professionals. On 12 December 2025, Professor Peter Johnson, the national clinical director for cancer, sent a letter to all cancer alliance leaders highlighting the effects of DES and asking them to cascade guidance through their clinical networks to help to reach appropriate health professionals, including GPs. We have also taken steps to improve our knowledge of the impacts of DES. The Department has formally commissioned the University of Exeter, through the National Institute for Health and Care Research, to undertake a systematic evidence review of those impacts, because, as my hon. Friend pointed out, the current research, while useful, does not yet paint a coherent picture. For instance, existing systematic reviews of the physical impacts across first, second and third generations are relatively dated, and have reached differing conclusions. There are also primary research studies that have not yet been incorporated in those reviews, and existing reviews have not fully considered psychosocial impacts. The newly commissioned review is intended to address those gaps.

My hon. Friend asked about screening. The research ensures that any future policy on local treatment pathways, clinical guidance and potential screening arrangements is informed by the latest available evidence. It will also be important in guiding decisions on whether a lifelong screening protocol should be developed for people affected by DES. The women affected by it should, of course, be involved in this work, which is why we ensured that the university will engage with members of DES Justice UK so that it can learn from women—and some men—with lived experience of the effects.

I recognise the importance of trying to understand the scale of DES exposure and the number of people who may have been affected. The Medicines and Healthcare products Regulatory Agency has taken a number of steps to establish what regulatory action was taken by its predecessor in relation to the risk associated with DES. They include searches of agency archives, both digital and hard-copy, for documentation relating to regulatory activity associated with the use of DES; visits to the National Archives to attempt to locate records from the 1970s, including discussions of DES by the Committee on Safety of Medicines, a predecessor of the Commission on Human Medicines; and locating previous editions of the “British National Formulary” and Association of the British Pharmaceutical Industry datasheets that may detail information on the use of DES. The MHRA also contacted the General Medical Council to establish whether any direct communications on DES had been sent by the GMC to healthcare professionals directly, but the GMC could find no records of communications. Finally, there have been searches of the Yellow Card database for any reports of the use of DES, although given the time that has passed, I am sure that the House will appreciate the significant challenges in relation to locating and retrieving records between the 1940s and the 1970s. In addition, my officials are working to explore what can be done through NHS digital processes in relation to missing or destroyed medical records.

Let me again thank Members for raising this important issue, and pay tribute to all those affected by DES who have continued to campaign for recognition, support and answers.