When Progress Becomes a Risk, and DES Daughters Are Not the General Population
Claire Silverstone-Bright is an author, speaker, and criminology researcher whose work connects lived experience with public education. She is the author of A Life Lived Chronically: Memoir of a DES Daughter and writes on DES, justice, and rehabilitation.
Progress is one of those words we rarely challenge. New is better. Modern is safer. More accurate is more reassuring. In medicine, in particular, progress carries its own authority. New tests replace old ones because evidence tells us they are better. Screening programmes evolve. Unnecessary procedures are reduced. Technology allows us to identify risk more precisely.
Overwhelmingly, that is a good thing. But there is a question we perhaps do not ask often enough. Progress for whom? Because a test can become better for the general population while becoming less useful for a particular population within it. Diethylstilbestrol (DES) daughters are not the general population.
Cervical screening in England has changed substantially. Since 2019, cervical screening samples have been tested first for high-risk human papillomavirus, or HPV. From July 2025, most women aged 25 to 49 who test negative for HPV moved from three-yearly to five-yearly screening, bringing them into line with older age groups. NHS England describes this as a more personalised approach, based on evidence that somebody who tests negative for HPV is at very low risk of developing cervical cancer over the following years.
For most women, this is progress. HPV causes the overwhelming majority of cervical cancers. Identifying high-risk HPV allows screening services to concentrate attention where the greatest risk lies. It can reduce unnecessary interventions and spare millions of women tests they do not need.
I am not arguing against HPV screening. I am asking something different. What happens when the woman being screened belongs to a population whose recognised cancer risk does not fit neatly inside that model?
I am a DES daughter. Like other women exposed to diethylstilbestrol, or DES, before birth, I carry risks created not by anything I did, but by a drug given during pregnancy decades ago.
DES daughters have around 40 times the risk of clear cell adenocarcinoma of the lower genital tract compared with women who were not exposed before birth. The cancer remains rare, at approximately one case per thousand DES daughters, but our relative risk is dramatically different from that of the general population. DES exposure is also associated with increased cervical precancerous abnormalities.
That distinction matters. Because screening systems are built on assumptions about risk. We are not the population from which those assumptions can automatically be drawn.
The problem begins with a perfectly reasonable sentence. You are HPV negative. The danger begins when that sentence quietly becomes another one. Therefore, you are at very low risk.
For most women, within the context of cervical screening, the distinction may hardly matter. For a DES daughter, it matters enormously. Because “no HPV detected” and “nothing to worry about” are not the same sentence.
An HPV negative result is not an inaccurate result. It means what it says. No active high-risk HPV infection was detected at the time of testing. The test has not failed. The question is what happens next.
Under the NHS cervical screening pathway, if HPV is not detected, the laboratory does not prepare a cytology slide to examine the cervical cells microscopically. Government guidance is explicit:
“The laboratory will not make a slide for cytology if the sample tests negative for HPV. There are no exceptions to this.”
For the general population, that makes clinical sense. For a DES daughter, however, it immediately raises another question. What if HPV was never the whole question we needed answering?
That, I think, is the distinction that matters enormously. The HPV test is not failing to do its job. The danger comes when the result of that test is allowed to become a conclusion about a woman’s entire cancer risk.
For most women, HPV status is extraordinarily informative. For DES daughters, our history supplies additional information. The two should not compete. They should sit alongside one another. Because DES daughters are not the general population.
Perhaps the most striking aspect is that DES exposure has not disappeared from official guidance. Current NHS cervical screening guidance specifically recognises DES daughters as being at increased risk of clear cell cancer of the cervix and vagina. It states that local arrangements should be made for follow-up of DES daughters with signs of DES exposure, usually through annual colposcopy.
Then comes the sentence that should make us stop and think. Requesting cytology for a DES daughter who is HPV negative requires local service agreements.
There, in one sentence, lies much of the problem. The exception exists. But it exists outside the normal machinery. It depends upon somebody knowing.
The woman must know that she was exposed to DES. Her clinician must know what DES exposure means. It must be recognised as relevant to cervical and vaginal cancer surveillance. The correct specialist pathway must be identified. Local arrangements must exist. The ordinary logic of HPV primary screening must, where appropriate, be supplemented.
That is an extraordinary amount of knowledge to require before a patient reaches the protection intended for her. A specialist pathway is only protective if people can actually find their way into it.
This is where the discussion moves beyond a single test. We tend to measure medical progress at the population level. Does the new system detect more disease? Does it prevent more cancers? Does it reduce unnecessary procedures? Does it save resources? Does it allow screening intervals to increase safely?
These are entirely legitimate questions. But population statistics have an unavoidable characteristic–they smooth out differences.
A system can improve substantially overall while becoming less appropriate for a small minority. Those two things can be true at exactly the same time.
That is where progress can become dangerous, not because the science is bad, but because its success creates confidence that the solution applies universally.
The greatest danger may not be an inaccurate test. It may be an accurate test being asked to answer the wrong question.
We are becoming increasingly sophisticated at identifying the dominant pathway through which disease develops. That is a triumph of modern medicine. But the danger comes when identifying the dominant pathway becomes synonymous with identifying every pathway.
The majority becomes the model. The model becomes the pathway. Eventually the pathway becomes so normalised that those outside it begin to look exceptional rather than simply different.
For most people, the system works better. For the minority, the burden can quietly shift onto the patient to explain why it may not work in quite the same way for them. That is not necessarily bad medicine. But it can become a dangerous form of institutional certainty.
We have been here before
This story is particularly uncomfortable for DES daughters. DES itself was once presented as medical progress. Pregnant women were prescribed a synthetic oestrogen because medicine believed intervention could improve pregnancy outcomes.
The women taking it were not behaving recklessly. They were following medical advice. Their daughters would live with consequences that emerged years and sometimes decades later.
The comparison must be made carefully. HPV primary screening and DES prescribing are completely different medical interventions, with completely different evidence bases. I am not suggesting otherwise. But they share a lesson. Medical confidence is not the same thing as universality.
DES daughters know perhaps better than most that medicine evolves. Knowledge changes. Risks emerge. What is regarded as established practice in one generation may be understood rather differently by the next.
That history should not make us reject modern medicine. It should make us more curious. It should make us ask more questions, not fewer. It should make us particularly cautious about allowing a population-level reassurance to silence the history of an individual patient.
Because there is another danger here–false reassurance. A negative test carries psychological authority. Patients hear the word negative and understandably hear safe. Clinicians working within stretched systems may also understandably interpret a reassuring screening result through the framework they use every day.
The problem is not negligence. The problem is that a highly effective pathway can become so familiar that its boundaries become difficult to see.
For the general population, an HPV negative result may mean an exceptionally low risk of cervical cancer over the following years. For a DES daughter, that result may still leave another recognised risk requiring consideration.
The result has answered one question very well. It has not necessarily answered every question. Sometimes progress can become regression not because something new has been introduced, but because something old and important has quietly fallen out of view.
What does “personalised” really mean?
NHS England describes the move towards longer screening intervals after a negative HPV result as a more personalised approach to cervical screening. For the majority, it undoubtedly is.
But genuine personalised medicine surely requires more than dividing people according to the result of one test. Personalisation must also mean recognising known differences in risk.
DES exposure is part of my medical history in exactly the same way that a genetic mutation, previous malignancy, family history or medication might be relevant to somebody else’s. It should change the clinical question.
Yet the irony is difficult to miss. We have become increasingly sophisticated at calculating population risk while some DES daughters still find themselves explaining to healthcare professionals what DES was.
There are women who cannot prove their exposure because their mothers’ records have disappeared. There are women whose mothers have died and can no longer tell them what they were prescribed. There are women whose DES exposure has never been entered prominently into their medical records. There are undoubtedly women who do not know that they were exposed at all.
This is why exception-based healthcare can be so fragile. It requires knowledge to survive. Someone must remember the history. Someone must recognise its significance. Someone must know that the ordinary pathway may not be sufficient. Very often that someone is expected to be the patient.
That raises a much broader question about modern healthcare. If a system works safely only when a patient already knows that she is an exception, how personalised is it really?
The burden of expertise begins to move backward. The system becomes increasingly technologically sophisticated while the patient becomes responsible for carrying the historical knowledge the technology does not contain. That is not progress in any meaningful sense. It is simply a new distribution of responsibility.
Rare does not mean irrelevant
One response to all of this is obvious. Clear cell adenocarcinoma in DES daughters is rare. That is true. But rarity has never meant that medicine can ignore a known risk. Indeed, the entire logic of risk-based healthcare is that different populations require different responses.
The National Cancer Institute, or NCI, continues to recognise the increased risk of clear cell adenocarcinoma among DES daughters, noting both its rarity and the very substantial increase in relative risk. Both facts matter. It is rare. We are at increased risk. Neither statement cancels the other.
This is where discussions of risk can become strangely distorted. If an event is uncommon across an entire population, it is easy to describe the risk as very small.
But the important question for a patient is not simply. How often does this happen to everybody? It is also. How often does this happen to people like me?
Those are not necessarily the same calculation. DES daughters are not the general population. The purpose of recognising a high-risk group is surely precisely so that we do not erase it again when designing the next generation of healthcare.
Otherwise we create an extraordinary paradox. Medicine identifies a group as different. Research establishes its unusual risk. Guidance acknowledges the difference. Then the everyday screening pathway quietly returns that population to the statistical average. That is not personalised medicine. That is personalised knowledge sitting inside a generalised system.
Progress should widen the lens
I do not want to return cervical screening to the past. I want DES daughters carried properly into its future. There is a considerable difference.
Modern HPV screening is an important medical advance. But advances become truly progressive only when systems retain enough flexibility to recognise the people who sit outside the dominant pattern.
DES daughters should not have to choose between accepting population-level reassurance and appearing difficult because we ask whether our particular risk has actually been considered.
We should not have to become amateur experts in laboratory pathways simply to establish whether the test being offered addresses the condition for which we are at unusual risk.
Healthcare professionals should not have to navigate inconsistent local arrangements to provide appropriate surveillance for a population whose increased risk has been recognised for more than half a century.
There should be clear, nationally understood pathways for women with known prenatal DES exposure. DES exposure should be recorded prominently in medical records so it travels with the patient, rather than relying on her to explain the history repeatedly.
Clinicians should understand that an HPV negative result answers an HPV question, not every possible cervical or vaginal cancer question. Women should be given clear information about what their screening result does and does not establish.
That is not an argument against modern screening. It is an argument for making modern screening genuinely modern. Because sophisticated medicine should be capable of holding two ideas at once. HPV primary screening can be a major advance for the population as a whole. DES daughters can require something different.
Acknowledging the second statement does not undermine the first. It completes it. Progress does not become less impressive because we ask whom it fails to protect. It becomes more intelligent.
HPV screening can be an extraordinary advance and still require an exception for women whose risks were written into their bodies before they were born.
The question is not whether HPV screening represents progress. It does. The question is whether progress remains progress when the system forgets that some of us were never the general population in the first place.
We do not need medicine to abandon progress. We need progress to remember history. We need personalised medicine genuinely capable of recognising difference. We need a screening system in which a safer future for the many does not inadvertently make the few harder to see. Because progress that leaves a known at-risk population behind is not complete progress at all.
For those women, it can look remarkably like regression. Perhaps that is the real test of progress. Not simply whether medicine becomes better at treating the majority, but whether it becomes sophisticated enough to remember those of us who were never the general population.
Read more from Claire R. Silverstone-Bright
Claire R. Silverstone-Bright, Author, Expert by Experience & Criminologist
Claire Silverstone-Bright is an author, speaker, and criminology researcher working at the intersection of hidden medical harm, justice, and rehabilitation. Her memoir, A Life Lived Chronically: Memoir of a DES Daughter, explores the lifelong impact of DES exposure and the wider consequences of being medically harmed, misunderstood and unheard. Through her writing, public speaking, and research, Claire examines how identity can be rebuilt after adversity. Her mission is to transform lived experience into public education, compassion and meaningful change.
