See our Photo of the Week (and archive of more)

Opinion Advertize Permission
To be notified of new articles Survey Store About Us
DES Given To Young "Too Tall" Girls
In Appalling Medical Experiment

by Nora Cody
Oakland, California

This article is part of a series of commentaries by Nora Cody, First Do No Harm: A Consumer Health Advocate's Cautionary Tales, which examines issues in health and medical research, with a special focus on women's health topics.

Earlier this year Australian newspapers reported an inquiry into the use of DES to stunt the growth of young girls considered "too tall." (Note: DES = diethylstilbestrol, a synthetic, carcinogenic hormone drug known to cause cancer in women exposed in-utero since 1971.) Pediatricians gave DES to 168 girls in Victoria, Australia, from 1959 until 1975 -- four years after the link between DES and clear cell cancer was established. The DES was given to them daily to "make their skeletons age faster and stop them growing."

Researchers stated that DES was given because of concern over the problems the girls might face "finding boyfriends, buying clothes or becoming ballerinas." An excerpt from the research papers published in the paper The Age noted the following:

"Some girls feel so embarrassed with boys shorter than themselves that they believe their choice of male companions, both in the immediate future and as adults, will be seriously jeopardized.

"They may have difficulty in buying clothes appropriate to their age, and if clothes have to be tailor-made, extra expenses can be a problem.

"Some careers, for example classical ballet, are closed to an unusually tall girl.

"How tall is "too tall?" One 13 year old girl with an estimated adult height of 5 feet, 8 inches was given DES because "good evidence was produced that her prospects as a ballerina were outstanding but her estimated mature stature would have made this career impossible."

Researchers, who gave the drug to girls aged 10 and older, concluded that DES was "effective in controlling the stature of potentially tall girls."

They also found out that it brought on puberty more quickly and disturbed normal menstruation. Then, in order to induce regular menstruation, some girls were given monthly doses of another hormone, norethistrone. Other side effects of the hormone study, which was partially funded by Australia's National Health and Medical Research Council, included weight gain and darkening of skin pigmentation. The researchers' conclusion? That DES is "effective in controlling the stature of potentially tall girls, but great care is required in the assessment and management."

In a follow-up letter responding to this article, one of the "tall girls," Janet Cregan-Wood, reveals more problems faced by this group. She writes:

"We are the "tall girls" who were treated with stilboestrol in the 1960s and 70s. Contrary to G. Barnes's assertion (The Age, 9/7), we were not "public-spirited individuals who volunteered for treatment." Neither we, nor our parents, ever knew that we were part of an ongoing experiment.

"Explanations may have been given at the time about the pros and cons of the treatment, but we had no knowledge that there were also serious concerns, voiced by other researchers at the time (Bayley et al in BMJ, April 1963), with regard to the efficacy and desirability of such treatment.

"We have experienced, and are still experiencing, a multiplicity of health problems (including infertility, ovarian cysts and immune problems).

"Stilboestrol is the one common factor and it has been implicated for a long time in such health problems. No one has ever followed us up to determine definitely what the long-term effects of this medically unnecessary experimentation has been upon us. We require a properly conducted epidemiological follow up, not paternalistic reassurance that the treatment given to us was without fault, ethically and medically."

We join DES-Tall Girls in calling for long-term follow-up to determine the effects of this unethical use of DES.

This story may seem like an esoteric and isolated case until you contemplate the fact that thousands and thousands of "too short" young children are currently being prescribed synthetic growth hormone. My cousin is a reproductive endocrinologist who spends much of her time doling out this drug to anxious parents. Some of these children truly suffer from a deficiency of growth hormone, but many are brought in by parents eager to make their normal and healthy children fit a societal ideal. She told of one father who repeatedly pressured her to prescribe hormones that were not indicated for this healthy boy. In the face of her refusal he will simply keep shopping until he finds a less scrupulous physician.

What are the long-term effects of these very powerful drugs? The tall girls story, like the current fad for synthetic growth hormone, are frightening "solutions" that are creating victims of those they purport to help.

Nora Cody is a former executive director of DES Action USA, a national nonprofit consumer organization dedicated to informing the public and health care providers about the effects of DES (diethylstilbestrol).

Published in In Motion Magazine August 22, 1999.