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.

(Repost) Informed consent: As simple as asking?

This post originally appeared at On The Left.

The experience of a woman who had an IUCD inserted without her knowledge shows that there’s still a long way to go when it comes to informed consent in New Zealand.

The intrauterine contraceptive device was inserted when the woman went to Epsom Day Unit to have an abortion in 2010. She had not consented to having it and it was only in 2013 that she discovered it, after unsuccessful attempts to get pregnant.

An investigation by the Health and Disability Commissioner found the doctor mistakenly “assumed” the woman wanted the contraceptive device after seeing it on a hospital trolley.

There’s a lot of deep, serious stuff you can get into about informed consent – an issue with a dark history in New Zealand. Sandra Coney’s book recounting the Unfortunate Experiment at National Women’s Hospital in Auckland was one of the first “feminist” books I read, and even though I wasn’t old enough to really understand all the issues (certainly not the science) one thing was really, horribly impressed on me: that patients have the right to know what’s happening to them. And they must be allowed to make their own choices. And cis women (and, I’d learn as my feminism developed, trans women, people of colour, people with disabilities, people in every marginalized group and especially people in more than one) were frequently, automatically, denied that choice.

It raises a lot of questions about the assumptions we make (doctors are demigods, patients aren’t rational, science is unbiased) and the systems and structures we have around medical care, which feed in turn into questions about how our society regards certain people (e.g. husbands having the power to commit their wives to mental institutions). Those are big, meaty ideas which could require a lot of soul-searching and discussion.

But in this case – based on nothing more than reading the Stuff article quoted above – it seems that the woman’s trauma could have been entirely avoided just by a surgeon bothering to ask, “Hey, is this IUCD for you, or another patient?”

Add in the fact that Auckland District Health Board initially refused to acknowledge that anything was wrong with depriving someone of the ability to have children for three years, and this seems to be much less about serious ethical considerations about informed consent, and more about sheer arrogance and lack of concern about people’s wellbeing.

So what do we do to change that? In this case it’s good that the Health and Disability Commissioner has taken action to make it very clear that this kind of thing simply cannot happen. Auckland District Health Board has been “recommended” to do a spot review of patient records to make sure this hasn’t happened multiple times. We need to pay close attention to make sure that they actually change the way they do things to stop it happening again.

(I’ve tried to use gender-neutral language where appropriate in this article. Not all people who become pregnant/get abortions/have IUDs are women, and not all women can get pregnant. But I think the medical establishment, like society, still groups all people who are assumed to have uteri and assumed to be able to get pregnant under the heading of “women”, and the second-class status of that group is a contributing factor to this particular case.)