Debate over this book has unfortunately centred on criticism of Professor Bryder, but has uniformly failed to address the issues raised by her, that “there never was an 'unfortunate experiment' ”. Professor Skegg, Charlotte Paul, Barbara Brookes and now Barbara Heslop....all from Otago University...and R Jones, all avoid comment on the following points.....most of which are taken as direct quotes from the McIndoe Paper, Metro Article or the Cartwright Inquiry Report.
Fact 1; The 1984 McIndoe Paper was a retrospective audit of patients presenting to NWH with abnormal smears during 1955-76. (McIndoe Paper p 452 para 1). It was never a prospective study. Yet this 'audit' was the genesis of the Metro Article with accusations of an 'unfortunate experiment at NWH'.
Fact 2; Groups 1 and 2 were never two separate groups of women 'treated differently'.
To quote the McIndoe paper 1984, page 452 para 7, “Follow up cytology was used as the basis for division of the patients into 2 groups. Group 1 consisted of patients with normal cytology at follow up at 2 years, whereas group 2 patients had persistent equivocal or abnormal cytology follow up at that time”.
The two groups were created in 1984, on the basis of outcome of treatment, not on treatment received.
Fact 3; The Metro article states that (p 60, para 5); “12 of the total number of women had died of invasive cancer, 4 or 0.5% of group 1 women and 8 or 6% of group 2 women who had little or no treatment”.
Yet McIndoe paper p 454 para 4 states that the 131 women they designated as group 2, had received principal management by cone excisions in 88, and total hysterectomy in 33. Because of continuing abnormal smears they had a further 78 cone biopsies and 29 hysterectomies...ie a total of 228 major treatments in 131 women....whom the Metro article claims had 'little or no treatment', as the basis for their claim of an 'Unfortunate Experiment'.
Fact 4; Sandra Coney even owns up to this fundamental mistake in her own words, in her book(The Unfortunate Experiment Penguin 1988), p 17; .... “..we had made mistakes in the reading of their report...” ...“The first mistake concerned how the authors had divided the women into two groups”.....“ the key factor in establishing the two groups had actually been whether the women had positive or negative cytology, that is, whether there had been a cure or signs of continuing disease...”
Yet they continue to claim that 'little or no treatment' was the basis of higher cancer rates.....Dr Jones most recently in NZ Doctor 2009.
This inaccuracy was accepted by the Cartwright Inquiry ( p 95 & 150);
“The McIndoe paper distinguishes between two groups, and 22% of those whose abnormalities were 'untreated' developed invasive cancers”.
This is wrong!
Were they treated adequately?
McIndoe Paper p 453, para 6; “The 817 patients in group 1 remained clinically and cytologically normal for the four years after the initial biopsy, irrespective of whether or not there was evidence of complete excision of CIS.”
p 454 para 4; “The 131 patients in group 2 continued to produce abnormal cytology consistent with cervical neoplasia irrespective of initial management or the histologic completeness of excision.
Yet to Quote Dr Jones (NZDoctor 2009); “The detail (of McIndoe paper) shows women who continued to have abnormal smears, a result of inadequate treatment, had a 25-fold increased risk of cancer.”
This is simply not what his own (McIndoe) paper presents.
Professor G Seber (Univ AK Mathematics Dept) did an independent analysis of the figures from the McIndoe paper, ( 1990 together with P Mullins) which showed that the division into group 1 or 2 had no relationship to the initial management.
That is, the percentage of hysterectomies is similar for women who ended up in group 1 or group 2. The differences in outcome are related to ongoing disease not their management...the 25-fold increase Jones 'claims' above arises from ongoing disease...not treatment.
The irony of all this, is that the McIndoe Paper actually reinforces Professor Green's clinical perception....that the initial management had no bearing on subsequent disease.
Linda Bryder is Professor of History at Auckland University, with a special interest in medical history. While preparing to write a history of NWH, she had to deal with this 'unfortunate experiment'. She became interested, then intrigued and then finally flabbergasted by where that research led her. Despite claims by her detractors -who almost all seem to be based at Otago University- of superficial, non- professional work, she has done her homework....they just don't like her conclusions.
There never was an unfortunate experiment, 'lambs to the slaughter' and Frankenstein experiments....just a spectacular misrepresentation of the facts.
GP, New Zealand & Senior Medical House Officer, Denmark