How long should medical records be kept for the DES-exposed?

Record holders are under a legal and ethical obligation to maintain records safely and securely. Doctors often query how long medical records should be retained.

Although the guidance refers to minimum periods for which records must be retained, there may be occasions when records need to be kept for longer.

DES is transmitted to the next generations and can take many years to show some of its side-effects. Therefore and for better understanding and study of endocrine disruptor chemicals, we ask that DES victims records should never be destroyed.

Consequences of diethylstilbestrol during pregnancy; 50 years later still a significant problem

Since the 1940s, diethylstilbestrol (DES) has been administered to about three million pregnant women in the United States and in the Netherlands, between 1947 and 1975, to about 220,000. The most important consequences described are: for DES mothers an increased risk of mammary carcinomas and for DES daughters a 1 in 1000 chance of clear cell adenocarcinoma (CCAC) as well as an increased risk of (pre)malignant abnormalities of the stratified epithelium in the vagina and cervix. In addition to this, DES daughters frequently have developmental disorders of the cervix and corpus uteri. In connection with this fertilisation disorders have been described as well as unfavourable outcomes of pregnancy: more ectopic pregnancies, abortion and premature birth. DES sons exhibit an increased frequency of several benign abnormalities of the genitalia.

The Records/Information Lifecycle image by IGA, July 2016.

US National Library of Medicine National Institutes of Health, pubmed/11530703, 2001 Apr 7.

The DES problem continues to be an important issue. The entire cohort of DES mothers is in the age group with a high risk of mammary carcinoma. The youngest DES daughters will be of childbearing age for at least another 15 years; the risk of ectopic pregnancies and pre-term labour is increased. The oldest DES daughters are now reaching postmenopausal age. The incidence of CCAC of the vagina and cervix in the population is bimodal, with a second peak at older age. It is still unknown if at this age DES daughters will have an increased incidence of these malignancies. From animal experiments it becomes clear that DES administration to pregnant mice results in an increased incidence of genital tumours not only in the second generation but also in the third. This has yet to be investigated in humans and deserves special attention.

The legally imposed destruction of patient files after a period of ten years is a serious threat to patient care and scientific investigation, notably in obstetrics and child medicine.

TodaY’s Guidelines

More DES DiEthylStilbestrol Resources

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