Saturday, April 22, 2006

The Unfortunate Experiment

In looking for a research ethics topic to present at my workplace, I stumbled across a tale of untreated cervical cancer from New Zealand that is stunning. Led by Dr. Herbert Green, the project involved enrolling women with carcinoma in situ (stage 0 cervical cancer) in a study at New Zealand's National Women's Hospital to follow whether they eventually developed invasive cancer. The shocking aspect is that the women were not told that they were in a trial, were not informed of treatment options, and in some cases were not even told about their stage 0 status. The women were subjected to multiple cone and punch biopsies, which were done for monitoring purposes only and not done in a manner that would remove all cancerous cells. The women were then just followed, with no real treatment offered. Some later died of invasive cancer, and the study continued. This experiment went on for over 20 years, and was only made public when two feminist women's health activists broke the story in a lay publication, Metro magazine. A judicial inquiry resulted, and numerous ethical violations were found. For example, Dr. Green's premise was that carcinoma in situ never developed into invasive cancer, despite existing knowledge to the contrary. When cases were found, Dr. Green downplayed the evidence and reclassified those patients as cases of invasive cancer that were missed at the initial diagnosis. Dr. Green also believed that women were simply born with abnormal cervical cells, and that this was no big deal - the inquiry found that, to try to validate this notion, over 2,000 cervical smears were performed on newborn girls without their parents' knowledge or consent.

I've set up a Flickr set of my slides, which you can also view as a slideshow. I tend not to read my slides directly for presentation, but just to talk about the material and leave the slides as a reference, so you won't get the full effect but rather the bare bones of the story. Some of you might be interested, though, and there is a list of references at the end for further reading.

If you are interested in this story, I would highly recommend Sandra Coney's book, The Unfortunate Experiment. Coney is one of two authors who broke the story that led to the inquiry, and her book details the major players involved in the research, the effect on the women, and other information. The book is out of print, but you may be able to obtain a copy via your library's interlibrary loan service.

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MeSH Tags: Research Ethics; Cervical Cancer Inquiry AND New Zealand (keyword)

3 Comments:

Blogger Melissa said...

This sounds really similar to the Tuskegee syphilis experiments in the US. You would think people would have learned by now, but I guess it goes to show that sometimes people still think that women are expendable.

4:01 PM  
Blogger MikeE said...

Just found your blog while googling the book. I picked it up at an Auckland book fair for $3 yesterday. My mum was one of the survivors and Green is the reason why I'm an only child.

Looking forward to reading this piece of family history.

2:26 AM  
Blogger Rachel said...

MikeE, Thanks for your comment, and I'm sorry your mom was affected by this tragic experiment.

11:31 AM  

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