PROGRAMME 1: Monday August 30th
THE GUINEA PIG KIDS
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44 year-old, Mari Steed stares at some old photos of a chubby cheeked infant with far away eyes. In one she's sitting on a tiny tricycle in a baggy, spotted dress and in another she's clinging to a todler's walking frame. A third shows her staring, nervously out of a passport picture. That little melancholy girl is Mari herself, several months after her unmarried mother left her in the care of some nuns at Sacred Heart Convent near Cork in Southern Ireland.
Since finding these photographs Mari has also discovered her medical records from the time of her birth in 1960 to her adoption by an American couple around 18 months later. They reveal that she was used in medical trials to test the vaccine, Trivax, a drug designed to protect children against diphtheria, tetanus and whooping cough. Her records also show that after one injection she was left ill and vomiting. Mari simply couldn't believe that her mother, who was still at the convent when the tests were carried out, would have agreed to let doctors carry out such tests on her baby. Had she agreed?
Document visited the convent, and asked the nun now in charge there whether the permission of mothers had been sought before carrying out tests on their babies. Sister Sarto, a rather stern looking woman in late middle-age, told me that she would have to consult the convent's records because the trials had stopped nearly 30 years ago and nobody here now had been involved in any way. After trawling through the convent's extensive collection of archived files and folders she turned to me, nodding her head. "It's clear that all mothers were asked, she said, their consent was always asked for" Sister Sarto added that the Convent has always been a haven for distressed mothers and children and staff would never have acted against their interests.
Document then traced Mari's mother who now lives in Wiltshire. Josephine Bassett, has a very different recollection of events. She told this programme that she was never asked whether or not she was willing for Mari to be used in the trials. Instead, she claims the nuns took little interest in what she thought and simply told her to hold the girl down while the injections were given. Talking about this period of her life clearly upset her.
I then began trawling though papers at the Public Record Office in London and discovered evidence that there had been numerous such trials on children and babies in Britain too during the 1950's and 1960's. Many also involved testing the Trivax vaccine on children in care homes. Exactly who these children were and how this affected them is hard to tell. Professor Gordon Stewart, now emeritus Professor of Public Health at Glasgow University was one of the medical experts sent to assess the data. He told this programme that when he arrived at the offices of local health authorities to ask for the results he was told that for some reason they had all been destroyed.
Further research by the programme in America took us to a hospital in New York for children diagnosed as having contracted the HIV virus from their mothers. A former nurse who had worked at the Incarnation Childrens' Centre said she was regularly told to give the kids varied and some times very large doses of the drug, AZT. Jacqueline Herger initially believed that giving the children this highly potent yet still unproven drug was in their best interests. But when the health of two girls from the hospital she was fostering began to sharply decline she stopped the trial treatment. Then, even though Jacqueline believes their health then started to greatly improve, the local authority removed them from her care and put them back on the drugs programme.
New guidelines have now been issued in Britain by the British Medical Association which include measures to tighten up the codes of practice that govern drug trials here. It comes at a time when demand for them is greater than ever. Earlier this month (August) the government called for more research into the drugs given to children to help ensure that they're safe. Whilst there is an acceptance that all new drugs do need to be tested before they can be sold it must be ensured that nobody is exploited in the process. However, the Association's spokesman, Dr Michael Wilks, told Document that he fears that the problem will now simply move to the developing world where regulations are more lax and the people more vulnerable.
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