Box 21 View of a woman included in a clinical trial without her knowledge

As a result of radiotherapy treatment given in the late 1980s for cervical cancer, a young woman sustained serious long-term damage. This resulted in over 100 admissions to hospital and twenty-four operations which included: those for adhesion attacks; a hernia operation; a permanent colostomy and urostomy; an operation to remove compacted faeces; formation of and then removal of a rebuilt rectum and those for a mucus fistula and thrombosis. She currently suffers from a vaginal fistula, which intermittently allows faeces to escape through her vagina. She has survived her cancer, but at what price.

When she later learned, through the work of an investigative journalist, that she and others had been included in a clinical trial without knowledge or consent, she described her reaction thus: 'we discovered that we had been guinea-pigs in a clinical trial of a new radiotherapy protocol we felt totally betrayed. We trusted our doctors, yet none had given our written consent, even to treatment (only to the anaesthetic), and we were not given details about possible complications... We could hardly believe him: this was Britain in the 1980s not Hitler's Germany.'

She notes that of the many women included in this and similar trials and suffering similar long-term medical problems, many cannot have sexual intercourse, some are housebound through pain and incontinence and some have tried to commit suicide. As a result, marriages have broken up and children have been fostered. All are understandably angry about what has happened to them [21].

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