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9.8 Call for inquiry on anti-grow hormone


By GERARD RYLE and GARY HUGHES

Women who were treated with an artificial sex hormone as part of a
medical trial to stop them growing tall now want an independent inquiry
into the long-term side-effects.

More than half the women in a group formed to represent those who
took part in the trial have suffered from ovarian cysts - one of the
known side-effects of the hormone, diethylstilboestrol, or DES.

Other possible side-effects include infertility, cancer of the cervix and
breast cancer.

The trial on more than 160 tall Victorian girls between 1959 and the
mid-1970s was carried out by researchers from the Royal Children's
Hospital and Melbourne University.

The scientific director of the Royal Children's Hospital Research
Foundation, Associate Professor Graeme Barnes, said a follow-up
study on potential side-effects appeared justified.

"Any inquiry that was set up, I think you would find absolute
cooperation," he said.

Earlier this week Professor Barnes defended the trial, saying such
research had been due to "past contributions by public-spirited
individuals who volunteered".

But women involved in the hormone trial who have come forward since
The Age reported details last month said they were not told they were
taking part in a medical research project or warned of long-term
dangers.

Ms Janet Cregan-Wood, a spokeswoman for the group DES-Tall Girls,
said yesterday those involved in the trial now had the right to know of
any long-term medical side-effects.

Ms Cregan-Wood has suffered from a ruptured ovarian cyst, a series
of miscarriages and eating disorders since becoming involved in the
trial in 1965 at the age of 11.

Another member of the group, Ms Trish Gardner, 38, suffered a
thrombosis in her leg at the age of 14 after taking the drug for four
years.

She said an independent inquiry was required to trace all women who
may have taken part in the trial or other treatments with stilboestrol
carried out privately by doctors.

"We were never told this was an experiment. We were led to believe
this treatment was normal," Ms Gardner said.

"Girls were still being treated (with DES) after the dangers of it were
known, including that it could cause cancer."

The Melbourne trial has already been referred to a Federal Health
Department inquiry into post-war medical experiments established after
The Age revealed details of vaccine tests on orphans and state wards.

The Age has now learned that stilboestrol was used on the tall girls
after an earlier attempt to "cure" homosexuality in Melbourne men with
it.

Twenty-six men took part in the trial during the 1950s in an attempt to
"assist these patients to develop normal sexual drives". They were
given daily doses of stilboestrol for up to two years. Stilboestrol has
been linked to a number of potential side-effects in men, including
genital problems such as testicular cysts.

According to The Medical Journal of Australia, October 1959, the trial
concluded the hormone "controls, but does not cure the deviation of
aim or object of the sexual drive".