Life as an Extreme Sport

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,…

I 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.7I 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).

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.2Herper 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. By minimizing the focus on the actual science of the results,3Which are on the low side of meaningful and which haven’t even been analyzed by Vertex’s PI, let alone an independent source. 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.4I 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. 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,5Oh, such a long history:
The FDA;
Séralini et al.;
The Darwinius affair;
The U.S. Chemical Safety Board;
The FDA, again. 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.

Yesterday, the internet did one of its fountain eruption things, when The Verge wrote an article about the new Mike Daisey show Yes All Women.People, I have a name. It’s not “Twitter critic.” Especially given you’re embedding my tweets right there! The internet wasn’t shy about telling Daisey what they thought of his utilizing what was a powerful hashtag for his new monologue, and I was one of the people who stepped up to tell him just how unimpressed I was.

Put plainly, @mdaisey, #YesAllWomen isn't yours to use. Y'wanna truthfully talk about your experiences? How about #YesAllMen or #YesThisMan?

— Kelly Hills (@rocza) June 18, 2014

To my utter surprise, Daisey listened. Not only did he listen, but within about an hour of our talking, and a few hours, at most, of the noise made by the general internet disapproval machine, he apologized and changed the title of his show to one I suggested: Yes This Man.

@Spacekatgal @pschiendelman @rocza ta-da! http://t.co/ytjJXGSHJQ

— Mike Daisey (@mdaisey) June 18, 2014

Easypeasy, furor over, let’s move on to the next thing that needs changing?

Well, not so much. A lot of people feel that Daisey’s history means this situation should be evaluated differently than if it had been someone else; for those of you who are not aware, Daisey made news a few years ago when it was revealed that his monologue “The Agony and the Ecstasy of Steve Jobs” contained material that cauld not be fact-checked, some of which was eventually acknowledged to be fake. Since then, Daisey has removed roughly five minutes of contested material, and continues to perform version 2.0 of the show.

It’s not an unfamiliar story, and like every other time it’s happened, when it was revealed, people were pissed. People were pissed enough that, for some people, Daisey will never be redeemed, regardless of what he does, and his latest monologue, which he says will talk about how the world is built “on the subjugation and ownership of women, and how men perpetuate that violence,” is just further proof that he will attach his name to whatever he thinks will make money.

I don’t fault people for this, and if they don’t want to give second chances, well, there’s reason.I think the notion of harm comes into play here, and in particular who was harmed. In Daisey’s case, ultimately I think his misdirections and lies hurt him more than anyone else, except perhaps TAL for lax fact-checking. That separates him out from someone like Jonah Lehrer, whose harm, I’d argue, spread much further out than just him.

The thing is? People aren’t strict Dungeons & Dragons alignments; good people can do bad things, and bad people can do good things. In this case, Daisey actually did listen to the outrage and fury of women (and allies) who felt he was co-opting the hashtag for his benefit. Whether you believe that he actually thought that titling his monologue “Yes All Women” instead of “#YesAllWomen” would allow him to comment and explore on the space opened up by the topic, or you think it was just grabbing at current events, you can’t deny that he did change the title of the show when he spoke to the people actually upset about what was seen as a co-opting of an important hashtag.

Mike Daisey did a good thing. He did what we want people to do when a minority group yells up to the majority and says “hey wait, NO, that’s uncool.” He listened, listened some more, engaged, and then apologized and acted.

Does this mean Mike Daisey is a good person? No clue; I don’t know Daisey. But I’ll give him points for issuing a decent apology and being transparent about it. While his apology isn’t perfect, it does hit the four requirements for a good apology: recognition, responsibility, remorse/regret, and remedy (which I’ve written about here). At the same time, I do know that I’m not impressed by how his website glosses over the controversy he was embroiled in a few years ago, and as I’ve discussed elsewhere, once trust is broken it can be difficult to regain. I’d certainly be hesitant to take anything Daisey says at his word, and I probably wouldn’t seek out his company.***see below

History has many examples of good people doing momentarily stupid and bad things;My husband’s career is at least in part based on this; scientists, bless, tend to be motivated by the noblest reasons to do the stupidest things. in this case, we have someone who is at least morally ambiguous for many who did something good.

And that? Is a good thing. We, feminists and allies, need to leave room for people to make mistakes and make amends. We can’t yell at someone to change, see them make the change we wanted, and then go “oh sorry, now we’re going to attack you for something else because really, we just don’t like you.” I mean, by all means, don’t like someone all you want—that’s none of my business. But I grow concerned when a tool for change (like advocating for feminism) is turned into a weapon in a war of dislike.

It’s pretty important to look at what the motivation for anger is: are you mad that he used a bad title? Are you mad that he co-opted a hashtag? Are you just mad at him for existing? Each of these are different angers, and each one is going to have a different response. And by all means, be mad at him for existing if you are, but don’t conflate that anger with the small, immediate, and effective bits of anger that got a title changed and a monologue clarified.

***I spoke to Jessica Goldstein for Think Progress this morning, and her story can be read here: Mike Daisey Learns Yes All Women is Not A Title for a One Man Show. Been a while since anyone has interviewed me, and I’m pretty okay with how it came out. I also think Daisey held himself pretty well, and he has an excellent point about the difference between theatre and journalism. So, I take back what I said: next time you’re in Philly, Mike, drop me a note and lets grab a beer and talk.