East Maitland woman Rose Wright, whose family has been beset by reproductive health problems, has joined the campaign to highlight the ongoing dangers of the drug Diethylstilbestrol (DES).

The link between DES and cancer was first established 40 years ago but little has been done to raise awareness of the chronic conditions the children and grandchildren of women who took the drug are likely to develop.

Research in the United States has found that exposure to DES can lead to a higher risk of breast and testicular cancer, miscarriage, reproductive abnormalities, infertility and premature births.

DES Action Australia NSW co-ordinator Carol Devine said very limited information about the drug and its effects had been revealed publicly.

While 740,000 Australian women were prescribed the drug, many remained unaware of their exposure and the potential adverse health effects on them and their offspring.

Mrs Wright, 78, started taking DES in 1955 and again in 1957 and fears it may have taken its toll on her daughter and granddaughter.

Both have ongoing health concerns which have included a miscarriage, conception problems and the need for regular biopsies.

Mrs Wright said she was devastated to think that a drug she innocently took so many years ago may have contributed to her family's health problems.

DES is a synthetic form of oestrogen, given to prevent miscarriage and pregnancy complications, and to suppress lactation and post-menopause syndrome.

The NSW Cancer Council says years of research have confirmed that DES is a teratogen - an agent that can cause malformations of an embryo or foetus - and that exposure to the drug during critical stages of child development in utero increases the risk of abnormalities and can result in cancer.

Ms Devine said many people remained unaware of their exposure and the potential adverse health effects.

"People could be time bombs just walking around totally unaware of the consequences," Ms Devine said.

Her mother took the drug and learned about its dangers when Ms Devine was 16.

"I later married and had trouble carrying pregnancies full term and had several miscarriages and two premature deliveries," she said.

Ms Devine urged men and women born from 1938 into the early 1970s to question their mothers, other family members and doctors about DES.