JOURNALISM’S ROLE IN KEEPING SCIENCE HONEST

by Shannon Brownlee

[Editor’s note: Shannon Brownlee presented the plenary address at the NASW Workshops on Oct. 25, 2003, held in conjunction with the New Horizons in Science Briefing. The following is an excerpt.]

There really isn’t any difference in the way you go about reporting an investigative piece, or writing it. The real difference is how you think about an investigative article as opposed to a news story. In an investigative story, somebody always wears a black hat. Sometimes the black hat is an individual. Sometimes it’s a group of villains. And sometimes, the black hat goes on a system, a company, or an institution.

When there is an obvious black hat, investigative stories are actually pretty easy to report and write. But most of the time, a lot of people are wearing gray hats, which muddies the story line a bit.

Here’s an example. My tale begins with William Halsted. Many of you undoubtedly know Halsted’s name, from the Halsted radical mastectomy, the surgical technique he pioneered in the early 20th century. But what you may not know is that Halsted is also responsible for the way we think about cancer screening and early diagnosis, and why we believe that early diagnosis leads to cures.

I know you’re thinking to yourself, what on earth is she talking about? We don’t just believe early diagnosis leads to cures; we know it. That’s not merely an idea, it’s a fact.

But it isn’t a fact.

So let’s go back to the good doctor Halsted. He didn’t like people very much. He certainly didn’t like dealing with the women who were his patients, and he didn’t like his students either. But Halsted was a great surgeon. A meticulous surgeon. And…he was an ambitious surgeon. Halsted believed that his surgical technique, the radical mastectomy, could cure breast cancer.

That’s because he envisioned breast cancer as growing something like a fruit. This wasn’t surprising, since the majority of women who came to him had fruit-sized tumors, which Halsted did his level best to cut out. As you can imagine, that was often hard to do. Halsted kept thinking to himself that if women would just come in earlier, when their tumors were smaller, he could cure them.

His vision of how cancer grows, and most important, how it metastasizes, would influence the next 100 years of thinking about breast cancer.

Halsted imagined that a tumor starts out as a little lump, a nothing, a cluster of cells too tiny to see. Then the cells begin to reproduce, and as they do, they become more and more abnormal. Once they reached a certain size, they begin to send little emissaries—wayward cells—into the lymphatic system. Those little cancer cells would make their way to the lymph nodes, and then from there, spread to the rest of the body.

Halsted’s idea was that if you could catch the cancer when it was small and cut it out, you could prevent it from spreading. And as he refined his technique, it became more and more drastic. He cut out more and more tissue in the belief that if you removed the breast surrounding the tumor, you could really stop it cold. Eventually, he decided that if you took out all the lymph nodes, you could slam the door shut on those little nasty metastases.

This is a very simplistic view of how breast cancer works. But most journalists still kind of have this mechanistic view in their minds. Most Americans think this is pretty much the way it works.

So it should not be surprising that this is what the American Cancer Society thought when it unveiled an anti-breast cancer campaign in the 1930s with the goal to reduce the death rate from breast cancer, which was about 27 per 100,000 women. Remember that number: 27 deaths per 100,000.

The idea was to encourage women to examine their breasts, in the hopes that they would discover their tumors earlier, when they were smaller, and come in for treatment.

So the American Cancer Society launched an all-out effort to get women to do breast self exams. It mobilized an army of volunteers to call on relatives, friends and neighbors, and encourage them to examine their breasts for lumps, and then—this is a key part—to go to the doctor if they found one.

The American Cancer Society also enlisted one other group to aid in the campaign against breast cancer. Journalists. Writers and reporters fell right in with the anti-cancer brigade. Articles appeared in women’s magazines and newspapers, emphasizing the importance of combating breast cancer head on.

Women liked this message. It made them feel empowered, hopeful. The media liked the message because it provided a reason for telling melodramatic stories.

So, let’s fast forward a few decades. The idea that early diagnosis can save lives is now thoroughly embedded in the way we think about breast cancer. In fact, we believe it’s true for all cancer. Doctors believe it. Journalists believe. Patients believe it.

Not surprisingly, we journalists fell right into line when mammograms came around in the 1960s. We wrote stories exhorting women to get one. We explained how they work. We quoted doctors saying things like, “This will save women’s lives.” It just made sense.

Now fast forward three more decades. Last year, 30 million American women dutifully got their mammograms. Mammograms have had an undeniable effect on when women find out they have cancer. A decade ago the average size of a tumor by the time it was detected was three centimeters across. Now it’s two centimeters.

And of course, the death rate from breast cancer has been going down steadily, right?

Well, it hasn’t quite worked out that way. Remember I told you that the death rate in 1930 was 27 women per 100,000? Well, it was 27 per 100,000 in 1940, 1950, 1960…

It was 27 per 100,000 right into the 1990s.

All those mammograms, all breast self exams, all those tumors caught early, and it did not make one whit of difference in the statistic we care about the most—whether or not we are going to die from cancer.

The death rate from breast cancer has only begun to drop in the last five or six years, and mammography cannot take all the credit. In fact, it may not deserve any of the credit.

That’s right. I’m telling you that the whole idea of early diagnosis has not worked.

Well, let’s step back for just a second. It’s certain that some women’s lives have undoubtedly been saved by catching their tumors early. But on average, this massive national screening program has almost certainly led to huge numbers of women being treated for tumors that would not have caused symptoms during their lifetimes. Or that could have successfully been removed at a later time.

The critical part for the reporters is the role we played in persuading the American public that getting a yearly mammogram would lead to cures.

What happened? How is it that we helped get it wrong?

Weren’t there any studies saying that mammography might not be working? Weren’t there any doctors or scientists out there questioning what was going on?

There were studies. There were doubters.

A doctor named George Criles argued steadily through the 1940s and 50s that the American Cancer Society was scaring women unnecessarily. He argued that Halsted’s radical surgery was not a proven cure. And he argued that there was no evidence that early diagnosis makes a difference.

But for the most part, the press was not interested in George Criles. Nobody wanted to listen to the likes of George Criles. Not the doctors. Not the advocates. Not the journalists. And certainly not the patients.

The reason we didn’t want to listen, as far as I can figure, is that the idea of early diagnosis made too much sense. It was the triumph of Hope over Uncertainty. Proof that a seemingly logical idea is more powerful than the facts.

It might be easy to dismiss this chapter of medical and journalistic history as nothing more than an accident. It was the result of a series of events that on their own were not easy to notice, but which just happened to lead all of us, breast cancer advocates, doctors, reporters, and patients, to the wrong conclusion.

It would be nice to think that, but I can’t, because this collective delusion, this suspension of skepticism and disbelief has happened time and time again. The 20th century is filled with examples of treatments based on bad science that have been hyped by the press. Frontal lobotomy was hyped by one of the most respected reporters at the New York Times. High-dose chemotherapy for breast cancer was hyped by practically everybody.

Why does the press keep getting sucked in by unproven cures? Let me suggest the problem is endemic to medical writing in particular, and science writing in general, and that it has to do with the relationship between advocates, journalists, and the medical establishment.

When I started out there was a lot of talk in our profession about being translators, or conduits of scientific information. … There still is. We’ve always felt very special as science and medical writers because we were a sort of guild all to ourselves, the only ones in the newsroom who could understand all that scientific arcana and medical jargon. We felt that science and medicine were noble, and so maybe those of us who wrote about it might get to feel a little noble, too.

So it should come as no surprise that for the most part, scientists and doctors came out looking like heroes in our stories. Of course, in the 1950s and 60s, everybody thought of scientists as heroes. It was science, after all, that won WWII. But the effect of the relationship between science and the press is that scientists and doctors have gotten used to being stroked by us.

It first began to dawn on me that writing all those “rah rah” stories wasn’t doing anybody any good one day about ten years ago, when a big-name cancer researcher looked soulfully into my eyes and put his hand on my bare arm.

This guy was a very big noise at the National Cancer Institute. I loved writing about him. It was fun to explain the science behind what he was doing. And he was very good at flattering reporters. He used to call me up and tell me he was about to launch a new clinical trial, and did I want to write about it. Wow. I thought I had really hit the big time. Scientists were calling me.

So one day, I was talking to this guy about his next experiment, and he turns towards me and puts his hand on my arm, and looks deep into my eyes. And I think to myself, Oh my God, I think this guy is trying to shmooze me.

A second later I know he’s trying to shmooze me when he says, “I’m writing a book.”

You’re undoubtedly thinking, “What a maroon. What a naïf. Of course this guy was trying to win you over.” But back then, it never occurred to me that a scientist would have to woo me. For heaven’s sake, weren’t we already on the same team?

Later it occurred to me that every time any of us wrote about this guy’s work, it was at the beginning of one of his experiments. We never heard about the results. That’s because the results were lousy. Half the time, he never even published. And he knew as well as we did that no editor was going to run a headline about an experiment that said, “All the patients died, nobody saved.”

But he did so very much want to be in the news, so he offered the only thing he had that would make a good story: Hope.

Don’t get me wrong. I’m all for hope. Hope is a very fine thing, especially when you are listening to your doctor give you a diagnosis of something scary, like breast cancer. And I am deeply hopeful, no, I am convinced, that science will one day cure cancer, along with Alzheimer’s and multiple sclerosis and all the other terrible diseases that afflict us.

But hope is not the same thing as science. And it certainly isn’t the same thing as good journalism. We had been helping this cancer researchers peddle a kind of snake oil. If you want evidence that we’ve been successful salesmen and women, just look at how we got the public to buy the idea of early diagnosis.
The real story of mammography is not the lucky women who were saved by having their cancer caught early. The real story would have touched on different themes, like overweening ambition, power, rampant opportunism, and foolish pride on the part of advocacy groups, doctors—and journalists.

We in the media might have seen that if more of us had stopped for a moment to take stock, to exercise the skepticism for which journalists are so famous—and that forms the foundation of good science. We should have written more about the uncertainty and less about the drama. More about the power of the American Cancer Society, and less about brilliant doctors like William Halsted. We should have listened more closely to the skeptics like George Criles and not been so ready to believe the mainstream.

It seems to me that science and medical writing are on the verge of a quiet revolution. I think we are about to begin taking our jobs as journalists more seriously and forget all that nonsense about being translators of science, conduits of information.

The coming century will bring choices about science and medicine that could be some of the most momentous we’ve ever faced. These changes have the power to alter the structure of human societies, and not necessarily for the good.

Certainly one of our tasks as journalists is to report new findings. But an increasingly important task in the future will be keeping science honest. Science and medicine are being underwritten by corporations. Everything from food and nutrition research to alternative energy to clinical trials in medicine is being paid for by companies that have a financial stake in the outcome. Conflict of interest is pervasive. It has the power to destroy the public’s faith in science. It also will erode the very principles on which science is based.

For too long, we’ve been reporting science and medicine as if the only thing worth writing about is the new information they produce. But isn’t the real story the process of how science and medicine work? I don’t mean those pieces about being inside the lab, extracting your own DNA, writing about the cut-throat competition of science. I’m talking about the power structure. I’m talking about influence. I’m talking about money. The first rule of investigative journalism—follow the money.

Don’t misunderstand me. I still love science. I like knowing how the world works. But I am worried that the very foundations of science are being eroded. Science journalism has an important role to play in righting that foundation. I hope you’ll be inspired to enter the fray.

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Shannon Brownlee is a senior fellow at the New America Foundation.