Our unfortunate ignorance

I may have got a little ranty on The Spinoff’s Facebook page recently, after reading this excerpt from a new book on the “unfortunate experiment” at National Women’s Hospital. To wit:

I appreciate this is an excerpt from the book, but it rings a little callous that the line quoted above is literally from the last paragraph of it. The excerpt humanizes the doctors involved, and doesn’t even mention by name a single one of the women who were literally left to develop cancer due to wilful medical neglect.

Sandra Coney and Phillida Bunkle’s 1987 article in Metro gets only half a sentence – “It took the attention of feminists and a media response to highlight the tragedy …”

For people who have no idea what happened at National Women’s Hospital, this article will not be informative, either about the arrogance which led to up to 30 women dying of treatable cancer, or the significant impact it had on the way we think about informed consent and medical ethics. And that’s a shame.

As I say; I know it’s just an excerpt, from a book written by a doctor who had a significant role exposing the unfortunate experiment, with the clear intention of ensuring this horrific chapter in New Zealand’s medical history isn’t whitewashed. Per the Otago University Press statement (pdf) on its publication:

Since that time there have been attempts to cast Green’s work in a more generous light. This rewriting of history has spurred Ron Jones to set the record straight by telling his personal story: a story of the unnecessary suffering of countless women, a story of professional arrogance and misplaced loyalties, and a story of doctors in denial of the truth.

But that’s not what comes through in the foreword, where the doctors who wilfully experimented with women’s lives without their consent are humanized, where Herb Green’s initial work is described as “a major advance for New Zealand women” long before any mention of the fact his later work killed women, which erases a culture of medical superiority and sexism in favour of shrugging, “It’s difficult for an outsider to comprehend how this could have happened”. Fifty words are given to a 1950 FIGO determination on carcinoma-in-situ, and literally none to the names of the women harmed – not even “Ruth”, the central figure of Sandra Coney and Phillida Bunkle’s groundbreaking article, whose determination to access her own medical records blew the lid of the experiment; not even Sandra Coney or Phillida Bunkle themselves – reduced simply to “feminists”.

Suffice it to say, I don’t think The Spinoff have done its readers a good service. And that’s a pity because this book deserves to be publicized. This chapter of our history needs to be better known. We should understand the complex issues and background around medical science, patriarchal arrogance, the dismissal of women’s safety and autonomy, and our understanding of informed consent which impacts people to this day.

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Coney and Bunkle’s article (pdf) was published in 1987. I was three-and-a-half and not really paying attention. But Coney’s subsequent book of the same name was one of the volumes my mother unsuccessfully tried to sequester from the family bookshelves as I reached those dangerous pre-teen years of awkward questions and being able to read a little too far above my age grade.

I picked it because I liked the statue on the front cover (and it was in a cupboard I clearly wasn’t supposed to be able to reach). I didn’t even know what a cervix was. But I knew there was something terribly wrong when one man in a position of power was able to do things to people under his care – to women – without telling them what was happening, or what the risks were. And I learned how hierarchies of power protect their own even when terrible harm has been done, even when it should go against every principle their institution or profession is meant to stand for. How people in societies are sectioned off into groups which are deemed less intelligent or less worthy of information or autonomy – women, people of colour, incarcerated criminals – especially where the advancement of medical science has been concerned.

It’s probably no surprise I turned out to be a feminist who doesn’t go to male GPs and never misses a smear.

We don’t have to demonise the whole medical profession. After all, it was doctors like Ron Jones who exposed the real data from Green’s experiments in 1984, and who are still determined not to let us forget. But we must be aware of the potential for harm when so much trust and power and blind faith is put in the hands of any profession, when laypeople are presumed to have no right to input or information about their own treatment, and when it becomes simply instinctive for institutions to defend their own against criticism. We have to remember our history so we can make sure it never happens again.

Books like this are tremendously important. But there are better ways to tell their stories.