© 1999 by Oxford University Press
Journal of the National Cancer Institute Monographs, No. 25, 163-166,
1999
© 1999 Oxford University Press
Risky BusinessCommunicating Scientific Findings to the Public
Correspondence to: Jeffrey Levine, M.J., Washington DC Bureau, Medcast Networks, National Press Building, Suite 1290, 529 14th St., N.W., Washington, DC 20045 (e-mail: jlevine{at}gnncast.net).
| INTRODUCTION |
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Communicating the risk of anything can be hazardous to the truth, as well as to the goal of good understanding.
When a journalist and a scientist agree to discuss a research finding, the conversation usually involves some description of riskthe probability that a disease will or will not occur, based on a specific set of assumptions. For example, what is the likelihood that a breast cancer gene will cause a tumor? What are the chances a diet high in cholesterol will lead to cardiovascular problems?
These highly technical questions hinge on a number of fine points that add up to credible information in the researcher's mind and, hopefully, a story for the reporter. However, a built-in chasm exists between the scientific worldview and the journalistic approach to handling information.
Risk to the scientist is ultimately a tool to measure and compare data, a statement of probability. For journalists, risk is a measurement of news value. The greater the risk of anything, the bigger the story. Is there a way of reconciling these disparate approaches?
Journalists and scientists must stop viewing each other as adversaries, except in extreme circumstances such as scientific fraud. News people are not health educators, but their primary goal should be to communicate meaningful information fairly and truthfully in a way that will allow the public to make appropriate decisions about their health. If a few papers are sold along the way, so be it. Everybody benefits.
Unfortunately, reporters and their editors are often at scalpels' points with scientists whose findings they are describing. Why? What is the issue? Scientists and reporters, who represent the public, have drastically differing views of risk.
Most would consider an expedition into the wilderness a risky prospect. But for Meriwether Lewis, the risks of civilization proved greater than those of the unknown. He survived the tests of the western United States for 3 years but committed suicide shortly after his return (1).
The British explorer George Mallory chose to undertake what proved for him to be the ultimately fatal risk of Mt. Everest simply, as he told a New York Times(2) reporter in 1923, "Because it's there." Risk-taking in the lofty contexts of great achievements is an essential virtue.
However, in a more mundane way, risk may simply mean the chance of getting caught, say, when one's car is in the cross hairs of the policeman's radar gun or when a politician's personal peccadilloes are uncovered by the news media. If risk is simply going to Las Vegas for some, or cracking the genome's mysteries for others, then explaining research findings meaningfully to both extremes is challenging, if not impossible.
Another issue is that an intensely political atmosphere often surrounds the reporting of disease and treatments. If a patient with human immunodeficiency virus wants a new treatment, the notion of risk shifts significantly, based on the certainty of death associated with the infection. Desperate problems require desperate measures that move the yardsticks of risk to their outer boundaries.
Statistics convince scientists of risk, but they do not sell papers or get people to watch television newscasts. A good journalist knows that he or she has to put the relevant facts in the story, but the "spoonful" of sugar is the anecdote. Variously known as the sob story, or the emotional "spike," the anecdote is an indispensable element in a piece about medicine or science, which otherwise would be impenetrable to the average person.
The anecdote is the way into the story for most reporters: Get the audience to commit to the person who has the problem, then explain it. Of course, there is a danger herethe reader or viewer may not get past the personal "tale of woe" to consume the nugget of information. In addition, because an anecdote is just a single case, it may or may not fairly represent the facts. Still, this is the reality of science reporting today, particularly on television.
Rarely, if ever, will the reporter simply lay out the scientific findings or explain P values, odds ratios, or relative risks. Techno-babble is out. Touchy-feely is in. Dumbing down has reached the point that, as a network medical correspondent was told, placebo was too difficult a word to use in a story, or that even the word "risk" itself should be expunged from copy as being difficult to comprehend.
Well, the reporter could understand saying "dummy drug" instead of placebo. However, eliminating risk from medical coverage could reduce the stories to the intellectual equivalent of absolute zero.
Yet medical and science reporters are constantly faced with the challenge of explaining their topics without explaining them away. That is why the notion of risk is often so overblownit is a device used to grab a viewer or reader. Indeed, risk is the kernel of the story, but it is often expressed without the nuance or science that earned the study favorable peer review and acceptance by a journal.
Over the years, certain stories stand out as examples of, as it were, the risks inherent in reporting on risk. Although they do not necessarily resolve the dilemma, the issues are interesting anecdotes on how the question of risk plays out in the real world of news.
The safety of silicone gel-filled breast implants occupied much of this reporter's time in the early 1990s. The controversial devices had been on the market for some 30 years by the time the U.S. Food and Drug Administration (FDA) gained regulatory authority over them. When ordered by then FDA Commissioner David Kessler to prove that the devices were safe in widely covered public hearings, the industry was unable to satisfy the critics, many of whom were litigating and winning multimillion dollar damage suits.
What made the story particularly poignant is that women were both the victims and the benefactors of the implants. Many survivors of breast cancer hailed the devices for restoring their bodies and their self-esteem. Other embittered recipients believed the implants, hailed by physicians as low-risk devices, had wrecked their health. Large amounts of airtime were consumed with dramatic footage about a story that combined sex, science, and the alleged abuses of corporate power in unusual and compelling ways.
It is not as though journalists did not feel justified in reporting what they knew about the implants. "By now, with 20 years of experience in risk reporting, reporters approach the subject with greater independence, and indeed, a certain cynicism about corporate behavior," writes Professor Dorothy Nelkin (3) of New York University in an essay titled "Reporting Risk: The Case of Silicone Breast Implants."
Nelkin, a specialist in sociology and law, also says in the piece, "The silicone implant fiasco followed on the heels of a series of cases in which companies have been found to obfuscate known risksfor example, the risks of asbestos, of dioxin, and of cigarette smoking."
The fact that the multibillion dollar implant settlement is still being debated some 6 years later is a testimonial to the difficulty in reaching a scientific and legal consensus about the product. It also suggests that the news media really did not do as well as they should have with the story, but then getting good science took a long time. Stories are no better than the research from which they are derived.
If the implant coverage was an emotional morass, the reporting of the tobacco debate offered more than a modicum of light to accompany its intense heat. David Kessler again played a key role. As discussed in many interviews with this reporter, beginning in 1994, Kessler started his move to regulate tobacco and cigarettes as a combination drug and drug-delivery device.
For reporters, this move was a "slam dunk." What is the risk of smoking? Kessler's mantra was that 3000 children take up the habit every day, and eventually 1000 of them will die of smoking. Abetted by a multibillion dollar ad effort, the tobacco industry was accused by Kessler and public health officials like former Surgeon General C. Everett Koop, M.D., of attempting to seduce children with an array of cartoon characters and merchandising promotions aimed directly at an underage audience (4). This reporter heard such arguments made directly on countless occasions.
The antitobacco juggernaut was also joined by advocacy groups, like the American Medical Association and the American Cancer Society. Whereas the breast implant manufacturers were seen as bumbling or, in many cases, clumsily covering up questions of safety about the product, the tobacco industry was portrayed as a sinister and conspiratorial enterprise that knew the evils of its efforts and denied them totally. Nowhere was this view more reinforced than in congressional hearings in 1994, witnessed by this reporter, in which tobacco executives swore under oath that their products were not dangerous nor addictive. Such obvious hubris was greeted with a widespread gasp of incredulity both by journalists and the public.
Only part of this view can be attributed to the accurate reporting of scientific and medical risk. But it could be argued that, given better data to work with and a more engaging target, the media were able to do a better job of communicating a real, immediate risk as well as an abiding hazard.
Even though tobacco regulation awaits final judgment in the Supreme Court, and the tobacco industry has settled for a smaller version of an earlier deal with state attorneys general, the public's heightened perception of risk and blame drove a once untouchable industry into a previously unthinkable compromise.
Things would be simpler, albeit more dull, if scientific unanimity was available on a given topic. Of course, that is not the case anymore than Arabs and Israelis are likely to find common ground on the major issues dividing them.
For instance, consider the debate over mammography guidelines. The issue hinged on real scientific questions about whether screening of women in their 40s actually prevented a significant number of breast tumors or simply exposed women to medical procedures that might prove to be harmful in their own right. However, as with the implant debate, the issue was every bit as emotional as empirical.
When a National Institutes of Health (NIH) panel (5) said in January 1997 that it could not find sufficient evidence to recommend mammography for women in their 40s, it created a fire storm. A resolution that passed in the U.S. Senate attacked the conclusion and urged the National Cancer Institute (NCI) to reconsider the actions. Facing possible budgetary reprisals from Congress, the NCI took another look at the evidence.
Within months, a new and broader screening guideline was made from another panel that looked at the risks and benefits of mammography in another light. Reporters were not surprised, but many were impressed by NCI Director Richard Klausner's ability to navigate the storm that at its core was not simply a matter of piling up the numbers to support one case or another.
The affair is well documented by Steven Woolf and Robert Lawrence of the Medical College of Virginia and The Johns Hopkins School of Hygiene and Public Health, respectively, in a Washington Post Op-Ed piece in May 1997 (5). But the controversy stands out in the mind of this reporter who witnessed the government's tortured efforts to reach consensus.
Recalling the hothouse environment of both the initial meeting and then the review, clearly sentiment as much as science was driving the debate. Back at the newsroom, intense interest, if not outright glee, was growing that experts, interest groups, and legislators were engaged in guerilla warfare.
Many stories from that era, certainly this reporter's included, inevitably contained a certain bias toward early mammography. That bias was not intentional, but the prevention case seemed to make a better journalistic argument. Even if a risk exists in doing something, the psychology dictates that it is better to take that risk than do nothing to prevent cancer. This argument is not based on science but on the very real human need to take action in the face of a terrible threat.
Reporters report facts and arguments, but some facts have greater weight than others. Even reporters who tried to do a better job were no doubt pressured by editors who wanted to "shape" the story to satisfy their own ends, namely, wider circulation or viewership.
Here is how this reporter presented the story at its high point in March 1997 in an excerpted script prepared for national broadcast (6).
(Narration) The National Cancer Institute was under intense political and medical pressure to change its view that early mammography wasn't necessary.(Sound bite with Richard Klausner, M.D., NCI Director) Screening mammography is capable of saving lives, of reducing mortality from breast cancer. The question that has been difficult to resolve is when women should begin.
(Narration) Earlier the American Cancer Society recommended starting annual mammography at age 40.
Clearly, the pressure for the new guideline had been building and was ultimately irresistible. In an earlier script on the same subject, I included the following comment from Director Klausner: "As I said at the end of the consensus conference, we can't create certainty where there is no certainty." However, that was clearly the problemcertainty was demanded by the public and the news media, and science was not cooperating.
At some point, we were repeatedly told that a better technology will be available for detecting breast tumors that will render the debate moot. Until then, reporters and their critics must agree that some stories are ultimately explained in a bigger context no matter what the science says.
When questions of public policy dominate the debate, the communication of real risks and benefits are often a secondary consideration. In these conflicts, emotion will carry the day more often than not in spite of a reporter's efforts to bring reason and logic to bear.
In the heated atmosphere of reporting risk, are there steps reporters and scientists can take to limit confusion and enhance communication? Indeed, there are, and they are often practiced, though not to the extent they should be. Consider the following steps:
1) Scientists bear much of the burden. They need to realize when they are dealing with journalists that they are not talking to their peers. Clarity and directness should be the goals of such discussions. Sometimes, researchers should rehearse their presentations in front of communications professionals if necessary to make sure their message is going to get through.
2) A caveat herescientists should by no means "spin" their interviews. Nor should they polish themselves to a state of talk-show glibness. But they need to know how to explain, within limits, what are the risks and benefits of a given problem in plain English.
3) Researchers must learn how to demystify media and to avoid viewing an encounter with a journalist as a toxic experience. Some of the better scientists have learned the obvious political lesson that a solid media presentation not only encourages understanding but also raises the individual's stature in the community. This is not ego. It is simply smart business, particularly in a media-saturated environment. In other words, it is better to be a confident advocate than a hapless apologizer.
4) The journalist's posture must be more restrained and cautiousdifficult qualities in an environment soaked with sensation of every sort. Yet, reporters and editors must look thoughtfully at every new study and ask themselves if it merits raising the opposing semaphores of alarm or of congratulation. Angiogenisis is an exciting approach to cancer but then so was interferon 15 years ago.
5) Whether reporters understand the science of statistics or not, sooner or later those who work the health and medical beats can tell when a study rises above the horizon line. Acting on such notions often requires courage; but if no distinctions are drawn, little if any value will be reported.
6) Journalism, like medicine, is becoming more specialized. Reporters who cover health and science as a beat are more inclined to get it right. They know the history of an issue and have a better chance of keeping one story, no matter how sensational, in perspective. Scientists should make an effort to work with reporters who have some appreciation for the material.
Meanwhile, viewers and readers are becoming ever more skeptical. Does everything cause cancer? A 1998 report that declared alcohol a human carcinogen is unlikely to affect sales or consumption of the product, at least not much. If by sensationalizing stories journalists are "crying wolf," ultimately no one is going to pay attention.
Sorting out the real from the hypothesized risks is becoming a greater challenge. A cartoon (7) in a recent New Yorker shows a dog on a couch talking to his canine therapist. The caption is, "I do what they tell me, I eat what they give me. How do I know they're not a cult?"
Even doing all the right things is not enough if confidence in the integrity of the information is consistently undermined.
A plane crash will certainly generate more attention than the fact the meals eaten by the passengers generally constitute a longer-term threat to health than the transitory risks of flying.
In an essay titled "Reporting on Risk: How the Media Portray Accidents, Diseases, Disasters, and Other Hazards," Eleanor Singer and Phyllis Endreny (8) observe that the media tend to focus on "catastrophic" accidents. "Such accidents rank near or at the top in terms of media attention, even though with one exception (automobile accidents) they do not result in a large number of deaths per year. Thus, media definitions of risk are based on the drama of the single hazardous event," they argue.
So the reporting of risk is a hazardous affair in which dramatics are always endangering relevance and one in which journalists and researchers often find themselves at opposing ends of the information spectrum. Still, like occasional antagonists in a marriage of long standing, the two parties need each other. They will never fully reconcile their differences, but the benefits of their staying together far outweigh the risks of their falling out.
| REFERENCES |
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1 Ambrose S. Undaunted courage. New York (NY): Simon & Schuster; 1996.
2 Platt S, editor. Respectfully quoted: a dictionary of quotations requested from the Congressional Research Service. Washington (DC): Library of Congress; 1989. p. 327.
3 Nelkin D. Report risks: the case of silicone breast implants. In: Risk: health, safety, & environment. Vol. 5. Concord (NH): Franklin Pierce Law Center, Risk Assessment & Policy Association; 1994. p. 233.
4 Orrick DJ. Tackling tobacco. Tobacco and advertising: part I [on line] [cited 1998 Dec 10-11] Available from: http://www.drkoop.com/wellness/tobacco/articles/advertising1.asp
5 Woolf S, Lawrence R. When politicians play doctor; the mammogram debate shows why it's dangerous. The Washington Post 1997 May 4; C1.
6 Mammography [news script]. CNN prime news; 1997 Mar 27.
7 Barsotti C, artist. Dog talking with therapist [cartoon]. New Yorker 1998 Nov 16; 100.
8 Singer E, Endreny P. Reporting on risk: how the media portray accidents, diseases, disasters, and other hazards. In: Risk: health, safety, & environment. Vol. 5. Concord (NH): Franklin Pierce Law Center, Risk Assessment & Policy Association; 1994. p. 261.
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