John Roughan is an editorial writer and columnist for the New Zealand Herald.

John Roughan: Genetic risk poses dilemma

Star's radical surgery choice raises important questions about preventive surgery

Angelina Jolie hopes she has alerted other women to the possibility of gene tests and treatment.
Angelina Jolie hopes she has alerted other women to the possibility of gene tests and treatment.

Isn't it a little disturbing that genetic science has caused Angelina Jolie to remove a perfectly fine pair of breasts? A "faulty gene" gave her good reason to watch them carefully, but preventive surgery?

Now that science has mapped the human genome, is this the future?

I have seen no criticism of her decision since her article appeared in the OpEd pages of the New York Times this week and I don't particularly want to be the first. Cancer is a fearful prospect and personal health decisions have to be respected even when someone wants to share her ordeal with the world.

But the article went much further. She said, "I am writing about it now because I hope other women can benefit from my experience ... today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

To "any woman reading this", she said, "I hope it helps you to know you have options ...

It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live".

It may be mere coincidence that Myriad Genetics, the sole producer of the tests, was in the United States Supreme Court last month defending its right to hold patents on the genes in question, BRCA1 and BRCA2.

Doctors are always the last people to criticise anybody's personal choice of treatment and confine their public comment to generalised points of information. An Australian professor of oncology, Geoff Lindeman, was suitably cautious in response to questions put to him by The Conversation website after Jolie's article appeared.

The BRCA1 mutation she carries, he explained, reduces the genes' ability to repair breaks in its DNA. "In some people this can lead to the development of cancer."

Should women be tested for it?

"Not routinely," he replied. "Genetic testing should be carried out following counselling after a proper assessment of risk."

Only about 5 per cent of breast cancers are hereditary, he said. About 1 in 800 women carry a mutation and their risk of cancer was somewhere between 40 and 65 per cent.

The 87 per cent likelihood that Jolie faced was "the upper end of risk when the gene was first discovered. Looking at the general population the risk is probably less, but for some families with very striking family histories, it could be this high".

The preventive options he suggested were, "close monitoring which includes MRI scans and mammograms starting at a suitable age. There are also drugs such as Tamoxifen that can halve the risk". In Australia about 20 per cent of women carrying the gene opted for preventive surgery.

Men too can inherit the BRCA2 mutation, increasing their risk of prostate cancer. I don't know what I would do, but I hope I would choose to keep any organ for as long as it remained healthy. The idea of excising living tissue that has not yet let you down seems like a betrayal somehow, a premature surrender to what might never happen.

I wonder if the geneticists who gave Angelina Jolie an 87 per cent risk of developing breast cancer also told her that "developing breast cancer" does not necessarily mean you will die of it.

The aforementioned website ran an interesting series of professional articles last year on the subject of over-diagnosis. Road accident post-mortem examinations have found far more men with prostate cancer than the proportion of the male population who die of the disease.

Likewise, breast screening has produced many more cases for treatment than ever proved fatal. Research suggests one case in three would have died without treatment. Some put the ratio nearer to 1 in 15.

Possibly hereditary cancers have a higher fatal rate but I would have thought it useful to weigh those odds against the genetic risk before deciding on drastic surgery.

Medical science has raced far ahead of our ability to keep a sense of proportion about the risks it can identify. That was less of a problem in the days when doctors made all the decisions and took sensible, calculated risks that patients "didn't need to know".

But when modern diagnostic tools are combined with a culture of informed patient consent, we can be confronted with terrifying possibilities.

Angelina Jolie saw her mother die at age 56 after 10 years of treatment for breast cancer. Now, she writes, "I can tell my children they don't need to fear they will lose me."

That is one less fear for them but her article did not mention whether they also carry the gene mutation. How sad if a girl or boy should come to maturity regarding an organ of their developing sexuality as a death sentence unless they get rid of it. Sad and unnecessary.

- NZ Herald

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John Roughan is an editorial writer and columnist for the New Zealand Herald.

John Roughan is an editorial writer and columnist for the New Zealand Herald. A graduate of Canterbury University with a degree in history and a diploma in journalism, he started his career on the Auckland Star, travelled and worked on newspapers in Japan and Britain before returning to New Zealand where he joined the Herald in 1981. He was posted to the Parliamentary Press Gallery in 1983, took a keen interest in the economic reform programme and has been a full time commentator for the Herald since 1986. He became the paper's senior editorial writer in 1988 and has been writing a weekly column under his own name since 1996. His interests range from the economy, public policy and politics to the more serious issues of life.

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