Historian writes on medical journalism in the war on Alzheimer's

A historian who teaches bioethics wrote a balanced, intelligent critique of Gina Kolata’s recent Sunday New York Times magazine piece, “How Do You Live Knowing You Might Have an Alzheimer’s Gene?”

Jesse Ballenger, in his blog post, “Medical Journalism in the War on Alzheimer’s,” at times wrote admiringly of the story:

“It’s the kind of piece that usually garners awards…”
“Let me begin by saying what Kolata does right…”
“Kolata’s writing is beautiful, and she tells a compelling story…”
“She also describes some complicated genetic science with commendable clarity.”

But then he explains that “she gets the most important things very, very wrong”:

“The problem is that Kolata uncritically accepts the perspective of Alzheimer’s researchers in a way that violates the fundamental value of systematic skeptical inquiry that ought to be at the heart of both journalism and science. There is nothing new or exceptional in this, of course. Frankly, Kolata’s many articles in the Times hyping the latest Alzheimer’s research, like so much of medical reporting in general, reminds me of the sort of journalistic failure, most egregiously by Judith Miller of the Times, that led so many to accept the Bush administration’s claims about weapons of mass destruction in Iraq. Just as uncritical reporting of the Bush administration’s false claims about the presence of WMDs, and its rosy assessment of how American troops would be received by the Iraqi people after dislodging Saddam, influenced the public and congress to support a war in Iraq, uncritical reporting of the sorts of claims made in the article about the imminence of therapeutic breakthroughs will influence the public and congress to continue supporting the war on Alzheimer’s and the growth of the biomedical industrial complex behind it.”
“Kolata’s article uncritically reiterates two other important aspects of the perspective of many Alzheimer’s researchers: a warped view of history, and an oversimplification of the disease.”
“Kolata’s story tends to conflate (a) very rare form of early-onset dementia, which is estimated to account for only one to five percent of all cases of Alzheimer’s, with the category as a whole.”
“I hope…that in a few years we will see more big stories of successful drug trials from the Dominantly Inherited Alzheimer Network (DIAN) project – though even then I hope they will be stories that more accurately represent the complexities of medical research on Alzheimer’s. But given the complexity of dementia and the difficulty of identifying efficacious patho-physiological targets for drugs in a disorder with multiple, inter-related causal mechanisms, I think it much more likely that the drugs tested in these trials will be of limited value. In that case, if we read about it in publications like the NYT at all, it will likely be a much smaller item buried in the back pages. Meanwhile reporters like Kolata will be on to writing splashy front page articles about the next imminent breakthrough.That’s how we roll in the War on Alzheimer’s.”

Comments

Susan Kirk posted on June 18, 2012 at 7:19 pm

It’s all very complex isn’t it? Now I may be ignorant but doesn’t continued funding (in any area of health research) rely on a couple of things. Firstly, results and secondly policy and public opinion, not necessarily sequential. Whilst I’m not advocating a trade-off with inaccurate reporting or sensationalism, a lot of these stories are straight from an organisation’s communications units and are written to capture the attention of the media. Sometimes they are even published as is. (If they meet the criteria as detailed below.) To start a journalist’s nose twitching and to gain approval for publication from the editor, this ‘story’ also has to rely on a couple of things. It has to be newsworthy and it has to be newsworthy. Newsworthy doesn’t include the latest marketing announcements or what happened next after a funding round. This makes it difficult to squeeze some of these ‘updates’ into a newsworthy category. So here lies the dilemma for both the researchers and the science writer. How do we keep this type of continuing research fresh and current, therefore influencing policy and public opinion, and continued funding, whilst also appealing to our readers needs.

Nustita posted on June 20, 2012 at 12:39 pm

I recently wrote a story about a research finding in a very specialized subset of neuroscience. I had to read that paper about five times before I could even vaguely understand what was going on. Later, I contacted a scientist for an outside opinion on the paper. She studies the same disorder addressed in the paper but her specialty is genetics, and she told me that the paper was kind of hard for her to follow, too. It made me feel a lot better that even someone with a science Ph.D. can struggle to understand this stuff!

I think that with generalist writers, it’s easy to feel worshipful and/or subordinate to your sources because you need their help to understand what is going on. This is the case whether you’re writing about neuroscience or, as in Judith Miller’s case, covert weapons programs and nuclear arms control. We journalists often depend on highly specialized experts to explain their work to us.

But while we may never master the complexities of immunohistochemistry or chromosomal replication, we CAN learn the broad basics of our field, understand the scientific method, and get a second, third and fourth opinion on the significance of a particular scientific finding. And we can eschew a boosterish approach to science journalism. Our job is not to help scientists get funding, sympathetic as they may be.

Anne Peticolas posted on June 25, 2012 at 1:23 pm

Thanks for pointing to this blog post. Excellent post, and now I want to read
Ballenger’s book.

William M. London posted on June 26, 2012 at 12:37 am

I don’t see how “Kolata’s story tends to conflate a very rare form of early-onset dementia, which is estimated to account for only one to five percent of all cases of Alzheimer’s, with the category as a whole.” (according to Ballenger) when Kolata wrote (as Ballenger acknowledges): “Though as much as 99 percent of all Alzheimer’s cases are not a result of a known genetic mutation, researchers have determined that the best place to find a treatment or cure for the disease is to study those who possess a mutation that causes it.”

And I don’t see any indication in Kolata’s article of hype or failure to indicate the complexity of relevant Alzheimer’s research (as Ballenger claims). Her second-to-last paragraph is: “But even if a drug ultimately proves effective, it will no doubt take time for Bateman and his team to figure out when best to give it and at what dose. It is quite unlikely that a cure will be found in the next few years.” That paragraph provides just the kind of perspective that is frequently lacking in many of the stories reviewed by healthnewsreview.org

There are many medical writers who deserve criticism for hype and oversimplification. Kolata is not one of them in general or in this instance. Suggesting that Kolata’s writing is a journalistic failure comparable to Judith Miller’s infamous reporting is ridiculous. It doesn’t appear that Ballenger is mainly concerned with how well Kolata communicates the relevant science and pragmatic issues to intelligent consumers. Ballenger’s agenda described at his faculty Web page is really quite different: http://www.sts.psu.edu/faculty/jfb16 .

It might be interesting for a journalist to do a story on what biomedical researchers studying Alzheimer’s disease think of Ballenger’s agenda. But I think that would give Ballenger more attention than he deserves.

Gary Schwitzer posted on June 26, 2012 at 11:54 am

We welcome the exchange of opinions. Here are a few that appeared on Twitter:

From the UK, Ben Goldacre wrote: “Interesting piece about the melodrama and overstatement in an NYT piece on the future of Alzheimers”

Gholson J. Lyon, M.D., Ph.D., is Assistant Professor in Human Genetics at Cold Spring Harbor Laboratory. He pulled a quote from Ballenger – “uncritical reporting of the sorts of claims made about imminence of therapeutic breakthroughs” – and added, “agree.”

William M. London posted on June 26, 2012 at 1:43 pm

On what basis does Gholson J. Lyon agree that Kolata suggested therapeutic breakthroughs are imminent? She wrote to the contrary: “But even if a drug ultimately proves effective, it will no doubt take time for Bateman and his team to figure out when best to give it and at what dose. It is quite unlikely that a cure will be found in the next few years.”

I wonder whether busy Ben Goldacre actually read Kolata’s long piece or concluded it was melodramatic and overstated based only on reading Ballenger’s short piece. What does it take for a piece about difficult decisions arising from reasonable concerns about hereditary risk of serious illness (especially when therapeutic breakthroughs are not imminent) to avoid being melodramatic?