Life as an Extreme Sport

Stenographers for Science–and Stocks

Yesterday morning, Forbes author Matthew Herper wrote about Vertex Pharmaceuticals’ new drug combination, Kalydeco with lumacaftor. In the middle of the article, Herper noted:

Some important caveats on the data: Vertex did the analysis itself, and even lead investigator Ramsey hasn’t had a chance to look at it deeply, as she will before it is published. The company shared the data with me ahead of its release this morning on the condition that I only talk to Vertex executives, Ramsey, and a representative of the Cystic Fibrosis Foundation , which funded the drugs development. I think the data are strongly positive, but I haven’t had a chance to show the results to outside experts as I usually would.

Herper then asked Twitter:

Oh. Well, if you’re asking,…

CheezburgerTaketheBaitI did take to Twitter to reply to Herper, and ended up getting into a conversation that probably would have spanned the entire day if the whole “day job” hadn’t “gotten in the way” of my participation. In the afternoon, the debate reignited when Herper posted a follow-up on Forbes that discussed the Twitter conversation, embedding tweets from myself, NYU journalism professor Charles Seife, and clinical trial participant Jay Gironimi.[note]I should take the time here to note that I do stand by the tweets of mine that Herper embedded, and that at all times Herper was gracious and pleasant to talk to (can’t say the same about some of the people who came out of the woodwork, but hey, that’s the internet).[/note]

According to Herper, he embedded what he felt the most interesting responses were; I, however, feel like my representation in the article was accurate but also incomplete. So this is my striving for completeness.

Embargoes are an interesting thing, so much so that there’s an entire blog dedicated to watching them (and watching people break them). For those of you that haven’t had the pleasure of trying to juggle time zones and embargoes, they are essentially a “gentleman’s agreement” between whomever is issuing the information reporters want, and the reporters themselves, that says stories won’t be published until certain conditions are met (generally a particular time). The point of an embargo is pretty simple: publishers, researchers, companies, the government, the entertainment industry, etc, want to get information in the hands of reporters in advance, so that the reporters have a chance to talk to necessary sources and write a story for publication at the time the embargo is lifted.

In theory, embargoes help reporters have a cushion of time to research the story, contact alternate sources, and meet their newsroom requirements for fact-checking and editing. They also help whomever is issuing the data get a push of information out at a set time; the United States federal government in particular is known for embargoing material until 6am ET, so that the morning news can generate buzz for whatever the embargoed material was. In a typical case of embargoed studies or data, a reporter would contact other experts in the field, explain that the piece she is writing about is embargoed, and the expert would agree to honour that embargo in order to provide quotes or opinions. Thus, everyone gains.

In practice, however, embargoes can be abused. The most common abuse of an embargo is precisely what Vertex did: limiting discussion to pre-approved sources. The sources, in this case, were Vertex executives; the primary investigator for the study, Bonnie Ramsey; and a representative of the group that funded the drug combo development, the Cystic Fibrosis Foundation. Each source has a clear conflict of interest that guarantees they will not be unbiased contributors to the story.

By restricting who can comment on the Kalydeco/lumacaftor combo, Vertex managed to get publicity for themselves without facing scrutiny from any experts; a look at the soaring share price of their stocks probably gives you a pretty big idea of why it matters.[note]Herper did state that his belief was that Vertex was trying to carefully control information in order to prevent insider trading. I find that this is a weak excuse, at best; Vertex clearly believed that an outrageously restrictive embargo would prevent insider trading from reporters. So why would a regular embargo, one that allows discussion with other experts not involved in material, not provide the standard coverage? After all, if someone agrees to discuss embargoed material with a reporter, then they’re agreeing to that embargo as well.[/note] By minimizing the focus on the actual science of the results,[note]Which are on the low side of meaningful and which haven’t even been analyzed by Vertex’s PI, let alone an independent source.[/note] Vertex was able to direct attention to potential, to hope, to promise, and to make sure that these concepts are what was covered in discussion of their combination, rather than anything critical that could have impacted stock prices.[note]I know that Herper says he was critical about the potential drug combo pricing, but I am not sure that hits stock prices in the same way as “low side of meaningful” would.[/note] As health economist Christopher McCabe noted, it was marketing turned into a story.

Avoiding clear bias in a story comes back to good journalism practice and professional ethics. This isn’t the first time someone has attempted to control data,[note]Oh, such a long history:
The FDA;
Séralini et al.;
The Darwinius affair;
The U.S. Chemical Safety Board;
The FDA, again.[/note] and it won’t be the last. But as Ivan Oransky noted in January when the U.S. Chemical Safety Board tried a similar embargo, reporters should be alarmed whenever anyone tries to limit a perspective to only the agency issuing the embargoed material. Oransky went on to quote himself reacting to a similar embargo, saying

this is an outrageous abuse of the embargo system — which, after all, is an agreement between two parties. One of the main reasons for embargoes … is to give reporters more time to write better stories. Part of how you do that is talking to outside experts.

And in that, I agree. If you are offered an embargo that limits who you are talking to, you are limiting the quality of story you produce. I would hope that, ultimately, those who are involved in reporting on the news–and especially science and health news–are committed to an obligation of truth and accuracy. When an embargo is trying to prevent discussion with other experts, it should send off enough bells about transparency and truth to create suspicion, not acquiescence. I realize that everyone involved in the Vertex embargo (not just Herper) was stuck in an unfortunate situation that placed the needs of the organization they work for against the ideals journalistic ethics and integrity, which is solely at Vertex’s feet. I would simply hope, and once again paraphrasing Oransky, that faced with the same situation again, everyone would decline to act on behalf of a company making such demands–or even better, convince them to use a typical embargo instead.

For better or worse, journalism–at least good journalism–does involve a practice of ethics. We know this; the good journalists don’t give quote approval, they don’t take gifts, they turn down expensive junkets. It shouldn’t be a stretch to include, in this practice of ethics, a refusal of limiting and outrageous embargo demands.

Professional journalism ethics may be a matter of honor among thieves, but in a field littered with pulpits masquerading as unbiased sources and the continual pressure of first before right, that honor, that ethic, may be all we have.


The title for this post, as with many references within, comes from the excellent Embargo Watch. When discussing the Séralini et al. embargo, Oransky coined the term “stenographer’s embargo.”

4:45pm 25 June 2014:
I’m scribbling a quick addendum here, because Herper appears to feel, if I have understood his tweets correctly, that the title of this post accuses him of being a stenographer. I apologize for giving this impression; I was (and am) utilizing the term as coined by Oransky. I actually think that Herper’s article was fine, given a bad situation. My point, and the one I stand by, is that Vertex should have never put Herper, or any other reporter, in that situation to begin with.