Thursday, October 18

The Unfortunate Experiment - Sandra Coney

In 1984 the medical journal Obstetrics and Gynecology published a paper that would initiate an investigation into one of the greatest medical scandals of the late twentieth century. Titled "The Invasive Potential of Carcinoma in Situ of the Cervix", it discussed the results of an experiment that had been run at the National Women’s Hospital in Auckland, New Zealand, since 1955. The experiment looked at the natural history of cervical carcinoma in situ (CIS) – in other words, what happens if no treatment is initiated in a condition suspected (when the experiment began) to lead to cervical cancer. The paper divided participants into two groups, one that had negative results after biopsy or treatment, and one smaller group that continued to test positive. This second group had a significant rate of cervical cancer; some of these women were followed for twenty-five years without treatment, and in only 5% did the disease spontaneously resolve. For the other 95%, outcomes ranged from positive but localised results to metastatic disease and death. The authors said these results were in contrast with other, earlier papers about the experiment.
After much research, Sandra Coney, one-time editor of a NZ feminist magazine, and Phyllida Bunkle, a women’s studies lecturer, wrote an article about the experiment, exposing the unauthorised research performed by one prominent gynaecologist in support of his belief that CIS was not associated with cervical cancer. Professor Herbert Green, a physician of considerable influence and power throughout New Zealand, persisted in his belief despite increasingly convincing proof of a progressive connection between the two conditions, never sought permission from his patients, or even told them what he was doing.
The article lead to an inquiry, and this is the story of that inquiry.
Dubbed “the unfortunate experiment”, this case is well known in ethics literature and is a cautionary tale about the dangers of unexamined ideology, the need for reflexivity and intellectual rigour in conducting research, and a cornerstone of the argument that participants in research must be informed and have choice.
The text vividly describes the institutional complacency that allowed Green to continue for almost thirty years, unquestionably causing hundreds of women deformity, pain, suffering, and shorter lives, all of which could have been prevented. It also points out the power one person can wield, especially in a small and interconnected population – those who tried to combat Green suffered professionally, and whistle-blowing wasn’t contemplated, let alone tolerated.
The book was written almost twenty years ago, and covers a time when patients in general were not expected or encouraged to be involved in their own healthy care, and women in particular were expected to be biddable and pleasant. The authors were depicted in much of New Zealand’s media as ball-busting feminists hell-bent on destroying a respected doctor for no good reason; many of Green’s patients liked him and had no idea what he’d done. Indeed, I found this aspect particularly interesting.
However, the writing is less straightforward than I would like, with a heavy smattering of extraneous detail that I found distracting rather than illuminating. I appreciate, especially in light of the excruciating rigours of the inquiry, why Covey was so meticulous, but this does distract from the general thrust of the story. Nonetheless, this is a troubling and important book, and there’s no guarantee that similar tragedies aren’t in the wings. We need only look at the Bristol baby scandal or Australia’s own Jayant Patel to see that medical institutions haven’t changed with any haste. – Alex

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