'Unfortunate Experiment' patients and families should get personal apologies: survivor

"Unfortunate Experience" survivor Clare Matheson has welcomed an apology from the Auckland District Health Board. Photo / Richard Robinson

An Auckland cancer patient - who was saved by a quirk of fate from an infamous medical experiment that led to the premature deaths of other women - is still waiting for a personal apology.

Wendy Tighe-Umbers says she was treated by Professor Herb Green and his research partners in the 1970s at a time when they headed a study that came to be known as the "Unfortunate Experiment".

Green's study was later branded unethical by a ministerial inquiry and made world headlines after it was found to have provided inadequate cancer treatment to some women at the National Women's Hospital in the 1960s and 70s.

This week - 50 years after the study began - the Auckland District Health Board made its first public apology over the affair when chair Pat Snedden visited cancer survivor and vocal campaigner Clare Matheson's home.

Snedden said the study's failures had let women down and Matheson welcomed the apology.

However, Tighe-Umbers was disappointed she only heard of the apology by reading the Herald.

She said she had earlier been saved from Green's experiment when another doctor saw her files by chance in the late 1970s and immediately took her in for a hysterectomy.

Green had been treating her for four or five years previously without telling her she had precursors of cancer, she said.

She felt the health board's long overdue apology should also be made in a more personal way, especially to families of women who died as a result of the experiment.

"If I hadn't read the paper, I wouldn't have even seen the apology because I'm not in the country," she said from Vietnam, where she is on a family holiday.

As many as 70 research patients under Green and his colleagues' watch developed cancer with half then dying from the disease, according to retired doctor Ron Jones, who has campaigned on the women's behalf.

Green set up the study in the belief a pre-cancerous lesion, known as cervical intraepithelial neoplasia 3, did not automatically lead to cancer and so invasive treatments, such as removing part of the uterus in a hysterectomy, could be avoided.

However, in 1988 an inquiry led by Dame Silvia Cartwright found some women in his study were not given adequate treatment.

This was backed by subsequent Otago University research, which found women given standard treatment, such as a cone biopsy, had a 1 per cent chance of developing cancer over 30 years.

Auckland District Health Board chair Pat Snedden has apologised to women, who received inadequate treatment at the National Women's Hospital in the 1960s and 70s. Photo / Stephen Parker

This compared to those whose cervical lesions were largely left alone in Green's study having a 31 per cent risk of the disease.

Auckland health board chair Snedden this week subsequently apologised to "the women whose lives were affected by these failures, which for many resulted in an early death".

Snedden's apology has now been posted on the Auckland District Health Board website.

"In order to reach and speak directly to as many of those impacted by the events of 50 years ago as possible, Auckland DHB's formal apology has been recorded as a video and is available on our website along with the written apology," a health board spokeswoman said.

Retired gynaecologist Ron Jones says as many as 35 women may have died from cancer after being part of the so called Unfortunate Experiment. Photo / Steven McNicholl

However, Tighe-Umbers would like the board to go further.

"The women that died and the women that sat there in waiting rooms who weren't as lucky as me, I think their families should have been notified."

She said her life was only saved by a chance encounter with a young doctor called Denys Court.

That encounter came when Green and his colleague were unexpectedly away one day and she was sent to Court instead.

Green and his colleagues had earlier repeatedly taken Tighe-Umbers in under anaesthetic but never explained to her why she was being examined.

As a prim young woman in her 20s, she was afraid to ask questions and when she did the doctors would brush off her concerns rudely, she said.

However, when she met Court, he quickly told her: "I've looked at your files and I can't believe it, you need a hysterectomy."

Tighe-Umbers had what she describes as life-saving surgery within a few days with Court later telling her he had gotten into trouble with Green for performing it.

Another woman, who did not wish to be named, also said she would like a more personal apology from the health board after her mother died from cervical cancer in 1977, aged 48.

She said her mother had a pap smear in 1960s and was then sent to National Women's Hospital and prepped for a cone biopsy operation but returned home having not had the treatment after Green reviewed her case.

She was then diagnosed with cancer in 1976 and died a year later, leaving behind eight children.

The woman said her family had not earlier made a public "fuss" about the incident.

But she said the health board's apology stirred up old unpleasant feelings because it felt "hollow" and "not personal at all".

She would have liked to receive a personalised letter.

"We were denied a mother who was the cornerstone of our family and it has just changed our family completely," she said.

"But if you received a letter in the mail, then you could open it and close it and look at it ... when you need it."