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Controversy over the "unfortunate experiment"

Letter from Elsewhere - By Anne ElseNot understood: getting the history of the “unfortunate experiment” wronghttp://elsewoman.blogspot.com

Fully understanding the complexities of what has become known as the “unfortunate experiment” at National Women’s Hospital (a term first coined by Professor David Skegg of Otago University) was, from the start, incredibly difficult. It was all the more surprising – and in some quarters, infuriating – that it was an investigation by two laywomen, Sandra Coney and Phillida Bunkle, of what happened, published in Metro magazine, that prompted the 1987 Cervical Cancer Inquiry presided over by Judge Silvia Cartwright, and her far-reaching 1988 report.

The author of a new book claiming that Judge Cartwright (and also Coney and Bunkle) got it wrong, medical historian Linda Bryder, PhD, did not interview any of those involved in the original inquiry, from the judge to the patients. Instead she relied on the available documents, which did not, of course, include the medical records of the women concerned.

There have been, as far as I know, two interviews with Bryder: first, for a Listener feature by Joanne Black called "Finally, the truth" that was completely unenquiring (to use the politest term I can find); and secondly, with Kim Hill on 8 August. In that interview, she claimed that Judge Cartwright was “very taken” with the article in Metro magazine, and that “because Judge Cartwright had very little knowledge of obstetrics and gynaecology or medicine and therefore, understanding those complexities and uncertainties of medical practice I think she had difficulty with understanding Herbert Green’s evidence that he gave.”

Bryder is now, according to her publisher, refusing to give any further interviews: “She approached the complex issue of the ‘unfortunate experiment’ as a professional medical historian and is not a participant in this debate. Now that her book is out she prefers to let her published findings, backed up by rigorous research, speak for themselves.”

This information comes from a 15 August New Zealand Herald article by Chris Barton. It usefully summarises Bryder’s claims about what went on at National Women’s, along with rebuttals by Clare Matheson, Professor Jo Manning, and Dr Charlotte Paul. But it does not summarise Bryder’s further critique of the context in which the inquiry took place, and the role of feminism.

Matheson is one of the patients involved in the experiment, who developed invasive cancer. Manning, Associate Professor in the Faculty of Law at Auckland University, specialises in medical law policy and ethics, and is the editor of The Cartwright Report: Essays on the Cervical Cancer Inquiry, coming out in September/October (see www.bwb.co.nz).

An epidemiologist from Otago University with a background in research into cervical cancer screening, Paul was appointed to the inquiry as a medical adviser to assist Judge Cartwright. As well as speaking to Barton for the Herald, she was interviewed by Kim Hill on 15 August.

Bryder’s arguments, said Paul on air, appear to be similar to those in an article by journalist Jan Corbett, which appeared in August 1990. She pointed out that she and other experts had spent a great deal of time and effort putting together a point-by-point rebuttal of Corbett’s arguments at the time. It’s clear in both the interview and the article that in Paul’s view, Bryder has misunderstood the medical issues involved.

Both Paul and Manning agree that, contrary to Bryder’s claims, Judge Cartwright was correct in finding that Professor Herbert Green's study was indeed research, not simply conservative treatment. (He had clearly stated his aim in a 1970 paper: ‘to follow adequately diagnosed but untreated lesions indefinitely … to settle the question as to what happens to carcinoma in situ’.)

Cartwright found that this research was, as Barton sums up, “unethical, for two reasons. First, it was dangerous to patients because it presented them with unacceptable risks – the risk being progression of CIS to invasive cancer. And secondly because none of the patients knew that they had been included in his research study and [none of them] freely agreed to participate.”

Bryder’s attempts to refute these findings (and in the process, call into question Cartwright’s capability and judgement) simply do not stand up. But what I also found profoundly disturbing were the implications of Paul’s on-air comments about the recommendations of the inquiry.

At the end of her first book on the whole matter, Sandra Coney wrote that what happened around and after the inquiry led her to conclude that:
“The profession saw ‘the unfortunate experiment’ at National Women’s Hospital as, at worst, a series of mistakes. Even this could only be said with ‘the benefit of hindsight’. It was unfair in 1987 to look back at medical decisions made ten or twenty years ago and pass judgement or hold people to account. The rules and laws that applied in other aspects of our society were not applicable here. If we had to find out about the misguided professor, we should simply have forgiven and forgotten… Of course, if you hold this view, there are no lessons from the past to be learned, and no changes are necessary to guard against it ever happening again…”

But it was crucial, she said, to understand that this was not so:
“To understand the sad events the public learned about in 1987 requires a rejection of the view that they were a mistake, an aberration, or unique….The real problem was medical power and its exercise. It could easily have been another doctor, another hospital and another city altogether. Without radical change, in the future it could be.”

Dr Paul mentioned this conclusion in her interview as upsetting for the profession. She noted, too, the reaction in the profession to the concept of patient advocates, saying that doctors and nurses thought that they were advocates for their patients.

Ironically, Professor Green certainly saw himself in that light. He wanted to avoid sterilising surgery and save women’s fertility, and this seems to have been behind his determination to prove that carcinoma in situ was a harmless disease which would not usually (if at all) progress to invasive cancer – despite the weight of evidence and agreement to the contrary.

There was no question of informing the patients about what he was doing, let alone of informed consent: as he made clear to Clare Matheson, his patients were to do as they were told. Nor were there any effective safeguards in place: he was not stopped, even after some of the women he was studying, rather than treating, began to get invasive cancer and die.

There were many other unacceptable (albeit less potentially deadly) practices going on at National Women’s, all of them without the knowledge, let alone consent, of those involved. They included vaginal examinations on anaesthetised women to teach medical students; vaginal vault smears being taken from more than 2200 newborn baby girls without their mothers’ knowledge or consent; the collection of more than 200 foetal cervices removed from stillborn and neonatal infants who died in the hospital, and an associated collection of sections of whole baby uteri set in wax, even though it was unlawful at the time to take tissue from a stillborn child; and patients suitable for a research trial into the use of radiotherapy and/or surgery for treatment of cervical cancer being randomised into one of two subgroups on the toss of a coin while they were anaesthetised.

It is important to grasp that neither the Cervical Cancer Inquiry nor its aftermath were about attacking the medical profession. (Indeed, as Paul noted and Coney and Bunkle fully acnowledged, the supportive work of members of that profession was critical to both the article and the inquiry.)

As well as developing an effective national screening programme, they were about understanding what had gone wrong and, as a result of that understanding, ensuring that it could not happen again, by embedding the concept and practice of informed consent, making safeguards work, and providing the public with an independent avenue of recourse – the Health and Disabilities Commissioner. (Who, by the way, stated last year that New Zealand hospitals remained unacceptably unsafe, two years after he slammed progress on improving services as “slow, patchy and uncoordinated”, and advocated greater transparency and open publication of hospital data.)

It is possible that similar changes would eventually have come about without the inquiry, but it served as a remarkably effective catalyst to prove just how urgently they were needed, and underpin their development. Cartwright, Coney and Bunkle deserve our respect and thanks for what they did; they also deserve accuracy.

*************

- Anne Else is a Wellington writer and social commentator. Her occasional column will typically appear on a Monday. You can subscribe to receive Letter From Elsewhere by email when it appears via the Free My Scoop News-By-Email Service. Anne blogs at http://elsewoman.blogspot.com


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