Gabriella “Biella” Coleman is an anthropologist whose work focuses on a range of subjects, from the anthropology of medicine to the practice of whistleblowing. To EFF readers, she is probably best known for her work on hacker communities. In 2014, she published the book Hacker, Hoaxer, Whistleblower, Spy: The Many Faces of Anonymous (Verso). She currently holds the Wolfe Chair in Scientific & Technological Literacy at McGill University in Montréal.

I first met Biella at Berlin’s re:publica conference in 2011, and got to know her when we both contributed chapters to Beyond Wikileaks: Implications for the Future of Communications, Journalism, and Society. She’s a long-time friend to many EFFers, and contributed to our 2018 collaboration with McSweeney’s, The End of Trust.

We recently got together to discuss a subject that Biella—who has a background in medical anthropology—has been thinking about for a long time: How medical misinformation spreads, and how attempts to curb that spread can potentially cause harm to patient communities, particularly those that lack trust in the medical system for valid reasons. Mis- or disinformation has been a hot topic since the 2016 U.S. election, and its impact on vaccination rates is an important issue, but rarely is the other side of the coin—that is, the harm that censorship can cause to patients seeking answers to little-understood medical concerns—discussed in policy circles.

It's a subject we spend a lot of time thinking about at EFF. We know that misinformation can lead to harm, but we're also wary of attempts to censor it—particularly when censorship is proposed as the only solution to what is nearly always a much deeper societal issue. Some of us have found great value in online patient communities, and understand that freedom of expression is integral to such spaces. We think that Biella's insights into the topic will be valuable to anyone who struggles with this question.

York: So what are we talking about today?

I’ve been thinking a lot of free speech issues in the context of medical misinformation. And then I’ve also been thinking about how certain quarters of the left are very dissatisfied with free speech. This is an ongoing problem, but it’s become very punctuated. I think it’s shortsighted, even though many of the critiques are valid...I think it’s very dangerous to let go of free speech commitments. I actually think it’s incumbent on people [like us] to help explain why it’s important why free speech also can’t solve a lot of problems. It’s something I often think about in terms of putting [free speech] in its place, but not getting rid of it.

York: Let’s start with medical misinformation then. It’s something I’m very concerned about as well. There are some interesting problems here, and no easy solutions—I’d love to get your take on that.

Indeed, there is a lot of medical misinformation out there. But as a scholar who often looks at the history of science and medicine, oftentimes the state of medicine is such where we can be quite sure about a cluster of issues but there’s a cluster of other issues that are in a dramatic state of uncertainty, and they always coexist at once. It makes everything from doctoring to policing information very difficult.

The famous example is of course vaccinations. There’s a lot of fear and misinformation and it is important to get the scientific consensus out there. But sometimes today scientific consensus is upended by the scientific field as well. Patients have fought very hard in order to gain a voice in order to help that process along in very important ways, whether it was psychiatric patients fighting against electric shock therapy or HIV activists demanding a different method for clinical trials. They were pushing against the grain of medical consensus at the time. So I always fear a set of commitments and solutions that rest on the idea of full certainty in one moment.

This is one of the reasons why it’s such a conundrum—because today’s scientific consensus may be tomorrow’s consensus, but some of it may not be, and where and how you draw that line may be difficult. I think it’s important to recognize that as we move forward with solutions. For example, I think something like linking to the CDC website to provide information about vaccinations is a really good idea, while I’m actually kind of against blanket bans.

This is for two reasons: There’s a lot of value in patients getting together to push against the medical establishment, because they can be wrong, so you just have to modulate that in way where you can point people to what the medical field believes is the correct information, but what happens with blanket bans is they impinge too much on the ability for patients to get together and discuss freely in ways that sometimes do go against the medical establishment. And then more importantly, it creates extreme resentment and more mistrust of mainstream scientific establishments. And so when you’re trying to correct for misinformation, it works against your very goal.

York: I agree, that’s so important. What you said about the idea of censorship creating resentment is’s not the Streisand effect exactly, but it’s definitely something of concern to me as well, that when we suppress certain speech, it gets pushed into dark spaces. Can you elaborate on that?

Sure. And let me be clear: I’m not saying there are no instances of speech on various platforms that shouldn’t be banned. It’s also because I believe that different providers have the right to configure their communities in certain ways. What I’m really concerned about here is the medical realm.

I do think that if we start seeing a trend where medical information, even the sort that we deem extremely problematic, is across the board or mostly banned—first of all, it’s not going to prevent people from gathering, there are just too many channels through which people will find other  places to congregate—it’ll fuel their conviction that they’re absolutely right to the extent that trying to change their mind becomes even harder than it is today. And, in some cases, it can push some of these groups and communities to places that are more difficult to track and see, but where they’re still associating and sharing information.

And again, I think that the risk in banning medical information too is you will catch in the net certain forms of pushback, discussions, that may strike as misinformation today, but in another ten years they’re not. So, where do you draw that line? Maybe sometimes you do draw that line, but very, very conservatively. You say, ‘you know what? There are fifteen things we find questionable, but we’ll only ban two of them, because scientific consensus is of extreme agreement, whereas in the other thirteen there are not.’

Many gains have been made by patient communities and lay experts getting together to push against dominant models of the time, and that’s everything from the minimization of side effects from drugs to questioning dominant therapies ... Medical history has shown that a lot of positive good comes when patients come together to be able to talk and share information that is not the consensus of the time.

York: You may recall a few years ago, when I posted on Facebook about trying to find a diagnosis, and connecting with online communities really helped. I can’t even tell you how many people I know who have been helped by online medical communities, especially those with chronic illnesses.

And that’s the many people with chronic illnesses especially, or obscure ones, or ones that are controversial like autoimmune diseases...these patient communities are vital for people to get to a diagnosis and be able to move forward with therapy.

If you’re on these forums, there’s a total mix of misinformation and scientific consensus, and also a range of information where you can’t even really say what it is because the state of the science is also uncertain.

And so I do fear blanket censorship, extreme bans, even while I favor some interventions that can maybe flag certain types of medical misinformation. I don’t know how effective that will be; it’s an open question that can be researched, but I’d be in favor of those types of interventions over more blunt instruments.

York: Yeah, I can understand that position.

Yeah, with hate speech and Nazi stuff, it’s maybe a different story. I feel less well-positioned to talk about it.

York: We don’t have to, that’s up to you.

[Coleman laughs]. I’m trained as a medical anthropologist so I know the history of … historical change around scientific consensus and facts and how wildly it can swing at times, and the role of patients and the importance of having an independent sphere of autonomy to discuss these issues, you know? I’m less familiar with the hate speech stuff even though I kind of obsess about it a little bit.

York: None of us want to touch it, right? It’s not simple. I’ve been dealing with it quite a bit, but we don’t have to do that here. Instead, let’s move to something else that interests you. I’d love to hear your thoughts on something else, which we’re grappling with too: How do we talk to the left about free speech?

Whew. Yeah, it’s so good that we’re talking about this. My general commitment is that we lose a lot if we cede free speech commitments and discourse, which are not the same thing, to the right. And in order for us not to allow that relinquishment to happen, we do have to make a more convincing case as to why free speech still matters for progressive and leftist causes.

Obviously, what we’ve done is not working, so we have to rethink both our commitments and our packaging.

York: Yes. This is so important.

Okay, so first: What do we lose if we relinquish both our visible commitments—if it’s not part of our platform anymore—and also, if we don’t fight for it? It’s two different things. One has to do, oddly enough, with recruitment.

I think that there’s sometimes this idea among progressive and leftists that those who go to certain channels of the right

What I’ve observed is that some progressives, especially young ones who are pro-immigration and have left politics on one level are drawn to people like [members of the so-called “intellectual dark web”], and they’re extremely skeptical of progressives and leftists on free speech grounds. They see those types as being critical thinkers, not the left. And so, if we cede free speech as a commitment and discourse, we will lose people that could be joining our cause to the right. It’s like a counter-radicalization strategy.

There are people who are like ‘Aren’t we supposed to like free speech? Haven’t we fought for this? Isn’t that what the university, and journalism, are about?’

So if the left is saying that free speech has been overvalued and doesn’t help our cause, of course young people are going to be like ‘that’s weird,’ you know what I mean? It’s such an important cultural value that just to denigrate it off the bat, for people who don’t know the complexities of many issues, it becomes a deterrent. That’s one reason that if we cede it to the right, we will also be pushing groups of people who have progressive leanings to the least reactionary, but nevertheless reactionary parts of the right. I see it all the time.

York: Yes, yes. I mean, we saw that article about Emma Sulcowicz just this week.

Yes! I know, exactly! But then, on top of that, is two things, one of which is that certainly free speech if we have it and institute it, whether at the university or through journalistic channels or more widely—it’s not a panacea. The history of liberal thought has had a simplistic idea: Ensure that people have access to free speech, get good information out there, and good ideas will prevail. There are a lot of naive assumptions built into the philosophical base about free speech. And I think that for those of us that want to continue to have a place and reclaim it, we have to put the naive assumptions aside and say, ‘okay, it’s not a panacea.’

But imagine if we had no free speech, what would happen. Well, for example historically, leftists often get thrown under the bus. Their free speech rights, for example in universities, are often the first to go. There was an interesting Washington Post op-ed about this; it was about how the speakers being disinvited or de-platformed are often leftists, around issues like Palestine and BDS, are often muted, and if we had robust free speech protections, it would be harder to do that.

Historically, whether it was McCarthyism on or off campuses in the United States, or BDS today, without protections, leftist and progressive causes will be silenced. That’s one reason to keep them at play, or fight for them.

Another thing too is that people on the right do embrace free speech rhetoric in extremely problematic ways, like ‘oh, forcing me to use your preferred pronoun impinges on my free speech rights,’ like Jordan Peterson’s case. I think that a case can be made as to why it doesn’t impinge someone’s speech rights, but [that’s not what I focus on]. When I teach about civil liberties and free speech, those just aren’t the issues I emphasize. I emphasize things like whistleblowing, or how difficult it was for newspapers to be able to publish stolen material that was in the public interest. Things that then led to significant social change, such as the Pentagon Papers. I try to show why free speech still really matters for the running of the free press so that it’s clear that if we lost those protections, we’d be in a much more precarious place.

We have to both recognize what free speech has gained us, what we will lose if we totally relinquish these protections, and also recognize that there are other structural dynamics that have nothing to do with free speech that shape who can speak. Even with good free speech protections, a lot of other elements need to be instituted for progressive change.

Free speech is a helpful ingredient in the cocktail of progressive politics, but shouldn’t be the only ingredient in our cocktail.

York: Yeah, I agree.

I think that always, as we fight for it, we have to put it in its place, and recognize its power and its limits at the same time. So that’s what I try to do when I support it and talk about it.

York: This is awesome, I love this. I’m in so much violent agreement with what you’re saying. I’ve been really leaning over the past few years toward highlighting the ways in which marginalized communities are affected by speech regulations. And I think it’s really interesting that there’s a recognition of that amongst the left, but a lot of the solutions proposed [to things like hate speech] don’t recognize how collateral damage might happen.

Exactly. That’s the interesting thing, both for free speech and anonymity: There is collateral damage! When you protect these things, there are going to be some problems that preciptate out of that, but then an extreme narrowing of free speech or anonymity will also produce collateral damage for our own politics as well. So, we need to make that case, we need to make that obvious, both by going back into history—looking at how those who are persecuted have been progressives and leftists—and show how that’s also the present when it comes to campus politics as well. The BDS example is one of the best ones. I’ve seen it in Berkeley and on my own campus, where BDS makes a strong showing, and then there’s an idea where we have to curb its expression. It’s put in the fold of hate speech, but it’s not—it’s attacking a political configuration, and people should have the free speech right to canvass this cause on campus.

Also, just to reiterate the very first point I made, there’s a great point made, I think, by Corey Robin. He made this case where we have to embrace discourses of freedom because American society is still obsessed with this question. So yes, we still have to have a progressive politics, a platform, but you can still thread that through commitments to freedom, because that’s just kind of the milieu in which this country was founded and configured.

I think it’s the same with free speech; it’s a very familiar discourse that was aligned with progressive causes for a long time. It doesn’t only serve progressive causes, but it’s progressives that fought for the right to have more robust free speech protections.

...So, if all of a sudden we relinquish that only to the right, we will fail to convince some younger people to join more progressive causes as well.

York: Absolutely. Okay, here’s a question I’ve been asking everybody: Do you have a free speech hero?

Ha, that’s a good question. I will say the whistleblower. The whistleblower to me is so important, whether it is the whistleblower in a corporation such as those who exposed Theranos in Silicon Valley, or whether it’s [Daniel] Ellsberg, or Snowden, or anonymous’s so risky to get that information out, and you risk so much in doing so.

We do need massive free speech protections, and beyond, to both ensure that they’re not punished and that those that publish information like newspapers are also protected. There have been many gains garnered from whistleblowing and, in fact, we need more of it and more effective whistleblowing as well. And for me, the figure of the whistleblower is my free speech hero, as well as the journalist willing to publish information provided by the whistleblower. That’s incredibly important.

And they should be our hero, not the Jordan Peterson who just doesn’t want to use “she/he”. That’s just kind of justifying being an asshole. I think it’s important to engage in the debate about why that’s problematic, but you don’t see people like that embracing the whistleblower, do you? I find that interesting. So yes, progressives should embrace free speech, but a different facet of it. We need to explain why those protections gain us something.

Of course it isn’t always effective, but whether it’s the ending of the Tuskegee experiments—that was done by a whistleblower—or the Pentagon Papers, or the closing of Theranos, there have just been so many gains, even though whistleblowing doesn’t always result in the change we want to see. We’d be much worse off if it didn’t exist, or if it were harder to do than it already is.

York: I want to touch on something you said here. You know, the thing that really frustrates me about some of the free speech defenders on the right is that I don’t see them speaking up about government censorship of sexuality, obscenity, et cetera. How are they okay with that?

Well, it’s a very selective reading of free speech.

But [there’s another thing I want to address]. When we look at [some of the criticisms of the left], they’re focused on things like the insistence of using certain words. But we can change that narrative. If I were to address it, I would note that we, as a society, change our terms all the time for the purposes of civil rights: We don’t use the N-word, we don’t use “colored,” “homosexual” is out of favor. And it’s because these people have been discriminated against, and fought hard for their civil rights. And so changing language is part of that architecture of civil rights and respect.

We change our language to conform to protocols of respect and dignity and civil rights. Free speech issues have to do with governments and corporations squelching the little Davids who are fighting the Goliaths. There are ways to approach the language issues where we can still fight for free speech protections.

York: Yeah, I hear this a lot from people, and it’s not a policy issue or a free speech issue. It’s something for us to have conversations about.

Yes, and to come up with what’s going to have the most respect for the autonomy and dignity of these groups.

We have to think about how we present it, and again, I do see this thing where [people on the left] say ‘free speech is useless, the right is using it to make these ridiculous arguments.’ It’s tough—there are many different sets of issues that get wrapped up into one ball.

York: Yes, absolutely. We’ve touched on so many important things here. Thank you, Biella!