Science Communication in the Age of Misinformation
If you don't have safe spaces to go talk about your body, if you have these data voids online, if you go look something up and there's no information there, then what happens is, the snake oil comes to the top.
In today's fast paced digital age where misinformation spreads like wildfire, the importance of science communication has never been more critical. From bogus health claims to pseudoscientific theories, the online landscape is rife with inaccuracies that undermine public trust in science. But New York Times bestseller Jennifer Gunter is trying to change this. Dubbed the internet’s gynaecologist, Gunter became an overnight celebrity when she debunked Trump’s medical examination letter and she continues to educate the masses each day.
In conversation with NSW Deputy Chief Scientist Darren Saunders, hear Jen shed light on the challenges facing modern science communicators and offer invaluable insights on how to navigate this uncharted terrain.
This event is presented by the UNSW Centre for Ideas, UNSW Medicine & Health and UNSW Science as a part of National Science Week.
Transcript
UNSW Centre for Ideas: UNSW Centre for Ideas.
Caroline Ford: Good afternoon, everybody. It's my pleasure to welcome you here this afternoon to our conversation about science communication in the age of misinformation.
My name is Professor Caroline Ford, and I'm a cancer researcher here at UNSW, and I'd like to start by acknowledging that we're meeting on the lands of the Bidjigal people and pay my respects to elders past and present. I'd also like to extend that respect to any Aboriginal or Torres Strait Islanders that might be joining us today.
So Dr Jen Gunther is a world renowned obstetrician and gynecologist that's really one of our fiercest advocates for women's health. Many of you will know her from her social media and her New York Times bestselling books, but I had the pleasure of meeting Jen at a conference last year in Edinburgh, and immediately was just charmed that she was as good in real life as I had hoped from her online presence. And then we're joined today, also by Associate Professor Darren Saunders, who is a good mate of mine and UNSW survivor? Let's say.
Laughs
Darren Saunders: We could use that word!
Laughs
Caroline Ford: Background in cancer research and neuroscience, one of Australia's best science communicators. He was awarded the Eureka Prize for his skills in science communication a number of years ago, and is now the deputy chief scientist of New South Wales. So both of these two absolutely are experts in communication, but also myth busting in the health space. And I think you're really going to enjoy their conversation this afternoon, so I'm going to hand over to them and listen. So please join me in welcoming Darren and Jen.
Applause
Darren Saunders: Thanks Caroline. And it's lovely to be back on campus. I think this is one of the few theatres I've never actually given a lecture in on this campus. So it's nice to be here. And Jen, it's a really great pleasure to be here having a chat to you know, obviously been a long term fan, and watching your fierce advocacy is something I've learned a lot from, so it's a great pleasure.
I'll just add to Caroline's acknowledgement of country. I grew up on Dharawal country south of here. I studied on Dharawal country, and it was a formative experience in me becoming a scientist, that immersion in nature and seeing nature and driving that curiosity to understand nature, was a formative part of me becoming a scientist. So I always like to add that acknowledgement, even though we're not on Dharawal country now, I think that's appropriate.
Jen, let's start with understanding how you first dipped your toe into this murky world of medical misinformation.
Jennifer Gunter: Yeah, so I was always interested in medical school and in residency with the weird information that people would read, like in People Magazine and in, you know, Reader's Digest, which used to be this journal that it would come to everybody's house, people… it doesn't exist anymore. But these were the kind of things where, like, put an onion in your sock to get rid of warts. And, you know, have lemon and cayenne pepper drinks. These kind of, like, really, I would say fringe, we would consider them pretty fringy now, but, but things that people would come in believing those things, I'd be like, where did you hear that? Or the tampons had asbestos. And they’d be like, oh, you know. And so, so it became an idea for me that this was an issue.
And then fast forward to, you know, sort of the late 1990s early 2000s and we have this sort of this boom of celebrity misinformers, Suzanne Somers in women's healthcare would be a huge one. And people would come in again with these questions, and you'd be like, where are you getting this from? And these books would be like New York Times bestsellers and all these things. It would be from Oprah.
And then I had my own personal health experience where I was pregnant with triplets. I have two surviving sons. One of my sons died at birth. They were born very prematurely and were very sick. Were in the intensive care unit for a very long time. And this was the early days of the internet and social media and looking things online. And when I had questions my doctors couldn't answer, I started finding myself going down rabbit holes. And it kind of was this light bulb moment that if somebody who was so obsessive with evidence based medicine, because I was the annoying person at, you know, in lectures, putting my hand up, going, that paper you quoted didn't say that. Like, it doesn't make a lot of friends, but I just can't help it.
So that's kind of got me into and I started really seeing how easy it is to get lured in. These people know you, they've had the same experiences and so I just decided that that when my kids were a little healthier, that I was going to fix the medical internet /
Laughter
Jennifer Gunter: / which was very naive thing at the time. I had no idea what that really, what that would entail, but that's how I got into it.
Darren Saunders: So we might touch on this a bit later, about the pushback that you get and the response that you get. But to do what you do takes a huge amount of time. It takes a huge amount of effort, both intellectual and emotional. So what continues to motivate you? So we've heard a little bit about what got you into it in the first place. How do you stay motivated? What drives you now to keep doing it?
Jennifer Gunter: Well, it's really devastating to be in the office and to see someone who is turning away from cancer care, to go to Arizona, which is a place people go in the US, to get IV vitamins for cancer, right? So, to sort of see that type of really awful turning away from things, like people that who they have a curable cancer and they're not going to get treatment for it, because they're afraid of what they've heard. Or to have somebody come in my office and I'll explain everything, they're like, oh, why am I just learning this now? And I feel so badly for those people. There's no reason that this lack of, sort of, democracy of information should really create these silos that make people scared, or just this lack of information that they didn't know to sort of advocate for themselves. So, I see people every week, every day sometimes, still touched by misinformation and so, so that's why I do it.
Darren Saunders: And that comes at a real price, right? That misinformation. I mean, there's really good evidence for the price of that misinformation.
Jennifer Gunter: Yeah. I mean, certainly, obviously we see with, you know, anti vaccine forces, and you know, people dying from vaccine preventable diseases. You know, we now know that, or there's really good evidence to suggest, for example, the shingles vaccine can reduce dementia by getting people to do it is… can be hard to overcome these barriers.
And I think that if, no matter what field of medicine that you're in, you're going to see it. We see it with climate change, we see it, you know. So it's not just, you know, limited to health care. But it seems to, I think, uniquely, you know, have a vortex around women's health care, because we have less information out in the public, right? So if you, if you don't have safe spaces to go talk about your body, if you have these data voids online, so if you go look something up and there's no information there, then what happens is the snake oil comes to the top and so…
Darren Saunders: So let's dig into that a little bit more, right? Women's health in particular seems to be a bit of a hotbed for misinformation and disinformation. So why is that particularly, do you think?
Jennifer Gunter: Yeah, well, if talking about your body's been taboo, then again, there's nowhere for you to go to get information about it, right? Like, if you, you know, if the idea of even just saying that your menstruating is going to, you know, cause a problem in, you know… I mean, I still remember having to tell a teacher that I needed to go to the bathroom, you know, because I had to go change a pad. And I was like, thirteen or fourteen, and he wouldn't let me go to the bathroom, because he was that kind of teacher, he didn't let people leave the… and I was like, I need to change my pad! I'm like, I freaked out! And I'm just like, you're teaching a bunch of eighth graders, and the idea that there's a girl who menstruates is like novel to you? Like, what?
You know, it was, obviously I didn't say anything, because I didn’t want to get in trouble, but you know, you start to think like, if everything about your body is taboo, then then where do you go to get that information? And obviously, we also have underfunding of women's healthcare. We have, you know, campaigns of disinformation in the United States funded by right wing forces about contraception and things like that. So there's a lot of other forces in play.
Darren Saunders: Mmm. We were just talking out the back before, you know, talking about my experience working in mining for a little while as a data consultant, and trying to look at the issue of attracting more women into the mining industry. And it came down to something as simple as; well, you don't have any toilets underground for women to change their sanitary products or to go to the bathroom on a twelve hour shift, and you're wondering why it's hard to attract women into the mining industry.
Jennifer Gunter: Right! Yeah.
Darren Saunders: It’s a similar sort of thing. So that attitude still persists in a lot of ways, right?
Jennifer Gunter: Yeah! I mean, when I started as a surgeon, they didn't have a female surgeon's changing room. And I was like, oh, okay, um, so, so really? Like, what do you expect? Like, I'm gonna go to the bathroom down the hallway? Has nobody complained about that before?
So, yeah, I think that if you've never thought about opening those spaces to people, you have to then think about, how can I make those spaces welcoming? And, yeah, the idea that there isn't a, you know, a bathroom is that we don't really have to hire expensive consultants. It's like, hey!
Darren Saunders: It’s not rocket science right?
Jennifer Gunter: Yeah a little bit of some nuts and bolts stuff maybe first!
Darren Saunders: So we're kind of circling the P word, patriarchy.
Jennifer Gunter laughs
Darren Saunders: Let's dive into that.
Jennifer Gunter: Sure.
Darren Saunders: What role does patriarchy play? And let's even go to the M word misogyny.
Jennifer Gunter: Yeah.
Darren Saunders: How much is that is part of what we're talking about.
Jennifer Gunter: It’s everything. I mean, I think that when you're in a structure that has been designed by this system that is designed to keep the system working as it is. It's the reason why, you know, we have, if you look in the United States, for example, at funding for endometriosis, which affects ten percent of women and can be a devastating diagnosis and causes, you know, pain, that the amount of pain and suffering, and it's just incredible what some women suffer. And the funding from the NIH I might be off by five million dollars for something like thirty million dollars a year. And then if you look at inflammatory bowel disease, which affects, I don't like point four percent of the population, maybe one percent max, I don't know, but certainly a lot less. And the funding is like three hundred million. And it's not that one isn't important. But if inflammatory bowel disease is that important, well, then endometriosis should be more important, right? But, oh, it just affects, you know, women and people who menstruate. So it doesn't affect the general population in a way.
So, so that's, you know, you have this systematic sort of underfunding. And then who do we elect that makes the decisions at the, you know, the NIH, which is our big, you know, governmental funding body. You know, these people are elected. These people choose their successors. You have all this sort of system baked in, and there are just a lot of glass ceilings.
Darren Saunders: Yeah, there's a lot of glass ceilings. I think people would be shocked to know when you look at the data, and we're going to talk about evidence a lot, because that's what we like to talk about. But when you look at the data of what gets attention in the health space, and particularly in women's health, and what the actual effect of that is in terms of life years lost, or, you know, morbidity or mortality, it's really shocking how out of whack the whole thing is.
Jennifer Gunter: Yeah, and also, you know, for example, you know, if you talk to people about everybody, and everybody's aware of breast cancer, everybody's aware about the risk of breast cancer. And again, this isn't about like playing favourites, but nobody talks about endometrial cancer, which is a huge problem for women, and it's in many cases, preventable.
And when you talk to people, because I see a lot of people have complications from, because I see a lot of people who have, you know, have complex vaginal issues. So when people have had complications from radiation therapy or chemotherapy, I'm the person who looks after these, these women, and they come in with massively scarred vaginas and all these complications for a disease that maybe was preventable, but nobody had ever even talked to them about that risk.
And so you start to think about all these inequities, you know, how women are less likely to come in to get, you know, cancer screening that, you know, trying to get HPV vaccines out. You know, we could eliminate cervical cancer, and yet we can't get everybody vaccinated.
Darren Saunders: All right, let's focus in on communication and trying to fight this kind of problem. I want to read out a famous little, I think this was an email. It might have been a post online. I can't remember. We're talking about Gwyneth Paltrow.
Jennifer Gunter: Oh!
Laughter
Darren Saunders: So you famously took on, for those of you don't know, Jen famously took on Gwyneth Paltrow, and I want to read a little passage/
Jennifer Gunter: Okay.
Darren Saunders: / because it raises a number of interesting points to discuss.
Dear Ms Paltrow, I've been reading all about the jade eggs you're selling on Goop for fifty-five to sixty-six dollars a pop, and the corresponding interview with a jade enthusiast. I've tried not to respond to this hot mess. After all, a man who leers at naked fifteen year olds and brags about sexual assault is about to assume the highest office in the land – and we might touch on that later –
Laughter
Darren Saunders: – quite frankly, women have more compelling health interests right now. However, I've been asked by so many people about your vaginal rocks that I felt it necessary to drop you a line. I read the post on Goop, and all I can tell you, it is the biggest load of garbage I've read on your site since vaginal steaming.
Laughter
Darren Saunders: It's even worse than claiming bras cause cancer. But hey, you aren't here to let the facts get in the way of profiting from snake oil.
Now, there's a lot in there that I want to talk about.
Laughter
Darren Saunders: Let's start with the first one. Why is Gwyneth Paltrow selling vaginal steaming to women?
Jennifer Gunter: Yeah, because it's profitable. Because, you know, again, we have these data voids. So if people can't talk about the fact that they have pain with sex, or nobody's talking about, you know, vaginal prolapse and how that's a real significant problem that, you know, that gets ignored, then people fill these data voids. That's what snake oil is. And so you have, you know, people, it sounds crazy, you know, they say something that you know is a bit crazy, or sounds a bit crazy, so it gets the presses attention. And, you know, she if, nothing is very good at creating a cultural firestorm and getting this, you know, all of a sudden, becomes written about. And this was before, you know, the election when Trump got elected. And I'm like, my god, there's all these other things going on, and this is what you want to write about in the newspaper? You know, Gwyneth Paltrow and her jade egg enthusiast, who says that you can recharge jade eggs with the energy of the moon? Like, there's lunar energy, I don't know about? Like, shouldn't we be harvesting that then?
Laughter
Jennifer Gunter: Like, you know? So, yeah, it just, and then it's amazing how, like, there just was no pushback. And people, you think, oh, these things all sound ridiculous, but people do it. They would go and buy these products. They sell out of them, or they'd buy cheap…well all of those are cheap too, but, you know, and then, oh, it's like, you know, jade, and it's, you know, then there's all this sort of, you know, Western exoticism as well as a price. All these awful things that are sort of wrapped up in it. And it just is allowed to go because she's a celebrity.
Darren Saunders: So it's allowed to go. But I think on the flip side, like, I find it fascinating just how effective someone like Gwyneth Paltrow is at selling this crap. And I like, you know, in Australia, we have, I think, bred some of the world's finest medical misinformation quacks.
Jennifer Gunter: You do have a couple here.
Darren Saunders: A couple of TV chefs that became quite famous for curing brain cancer at one point.
Jennifer Gunter: Oh yeah.
Darren Saunders: Selling magical lights to cure covid and various other things.
Jennifer Gunter: And I saw some woman on Instagram who, she lose her medical license or something? I dunno, something about people… and a bunch of Australians on my feed were like, oh, she's the worst. So, you know, she was like well known.
Darren Saunders: There are some shockers!
Jennifer Gunter: Yeah.
Darren Saunders: But one thing as a communicator, I look at them, and I actually learn a lot from the way they communicate, because they're incredibly effective at it.
Jennifer Gunter: Mmm!
Darren Saunders: So what is it about them that makes them so effective at communication?
Jennifer Gunter: Well, I think it sort of depends on the style. I mean, a lot of them, it's fear based, right? Like, oh, you know. So they play on a fear. So this one woman I saw from Australia, her, her deal was using your laptop is a cause of infertility. So…/
Darren Saunders: I haven’t heard that one!
Jennifer Gunter: / Yeah. So that the heat, or the electromagnetic waves or whatever, you know, you don't want to, it's, it's mind numbing to sort of actually read this, the, you know, the interpretation. So you have something that everybody uses, and everybody's felt like warm from a laptop, right? So, so you should start with something that's like that we all understand. And infertility is scary, right? And a lot of it is unexplained. And for women's health, a lot of ties into this, again, sort of fear of, you know, losing your breeder status, right?
That's how we are judged by the patriarchy. And even if every single person in this room is like, well, yeah, but I don't care whether I have kids or not, like, I'm not into it, and that's fine, but we grew up in a system where that's everywhere, in the messaging everywhere, and our parents grew up in that system, and their parents grew up in that system. And so it's almost like an epigenetic thing, like it's sort of everything is baked in, and getting out of it is stickier and harder than we think. I think that we're all affected by those messages that are just subliminal and everywhere, and probably most of us don't even realize, so she's tapping into a real medical issue, infertility, one that particularly is problematic, one that culturally has these sort of historical ties, and she's talking about something that we all have this relative, sort of, an experience of a laptop being hot, and if you don't understand, you know the causes of infertility, if you don't have the medical knowledge and you're in a vulnerable place, fear sells.
Darren Saunders: What about the way they communicate? So I've always watched them and observed them to be very good at connecting with people. They come across as warm and approachable, friendly, knowledgeable, and it's something I struggle with in online communication. I know you probably face this problem too. When do you go, aggh, this is insane. And when do you go all gently, warmly…
Jennifer Gunter: Right.
Darren Saunders: Because there's a strategy behind doing that effectively. They seem to really nail that down, right?
Jennifer Gunter: Yeah. So I think for those people, you know, they're, they're really tying, they're the original influencers, right? So, before social media, these, you know, same as the people like John of God, who did the bloodless surgeries, you know, that was like big in the 70s, right? It's the same type of thing. Or the people you go when you get healed, it's the same, it's all the same version of healing, right? And so they're, I think they're very good at connecting, they're very good at finding the common experience, and they're good at exploiting fear, and they're good at making you feel like, like you’re part… you're with them.
It's the same with an influencer. They're called influencers for a reason. They wield influence. You, they're maybe just like, 10% prettier. They're, you know, they're like, you know, we all like, aspire to, to have a little bit of that. They're, you know, they’re shinier… just things about them. And so I think it's that influence. And then once we think that we're friends, once we think somebody cares about us. It's a lot easier to believe what they say than someone who you think doesn't care about you. So I think it's that care. So that leads on to the discussion of how you fight this sort of stuff.
Jennifer Gunter: Yeah.
Darren Saunders: Because, you know, we know, and there's good evidence in fact that just throwing facts at people really doesn't do much. In fact, it could make the problem worse, right? So you've got to meet people on their turf, understand where their belief system's coming from in order to get traction with what they're saying. But then you've got to balance that with broadcasting to a different audience.
Jennifer Gunter: Right.
Darren Saunders: The cheer squad, if you like?
Jennifer Gunter: Yeah.
Darren Saunders: Here's what the facts are. And so how do you how do you walk that line? Because that can be really challenging, I find.
Jennifer Gunter: Yeah, it can be. And I mean, obviously this is all anecdotal, so to be, like, really upfront with that, although, you know, we do have some good studies. So for example, with vaccine research and getting parents to vaccinate their kids against measles, we actually know that scaring somebody, if they are somebody who's on the fence, is actually bad, because when you're… if you're scared, then you're worried a bad thing’s going to happen, and then what if you give your kid the vaccine, and they get one of these awful reactions you've read about online. Maybe it might not be true. What if that happens? You've caused that thing. But if you choose not to vaccinate and a bad thing happens, you didn't cause it, right? So actually scaring parents didn't make a difference. However, people who were roundly anti vaccine, scaring actually worked better for.
So we actually really need to have a better understanding for, kind of, each subject matter, like, what's the roadblock, right? Is… what's the fear level? What's the level of disinformation? And certainly for me, I mean, obviously it makes a difference if I'm communicating on Twitter or I'm on Instagram or on a blog, like, you know, on Twitter, it's you really just have to carry a big stick. There's no other way, because otherwise the trolls come and so you have to kind of deal with that. On Instagram. It can differ a little bit. And, you know, sometimes I have an exasperated approach, because I can't believe that there's people out there saying these things. And other times I kind of have a softer approach, but I can be pretty harsh in the comments, when people, sort of, come in to, sort of, spread the disinformation, because I always treat the comment section, that's like my house. You can't come onto my front porch and spew this kind of stuff.
Darren Saunders: That's a great analogy. I use that same analogy. It's like you're coming into my living room and spraying /
Jennifer Gunter: Yeah
Darren Saunders: / this stuff, that's not going to happen.
Jennifer Gunter: Exactly. So, so I think it's, it's important, and, you know, it can be very difficult because the comment sections where a lot of people can, sort of, get tripped up. And there's a there's a study that shows that even one negative comment can make a reader then not believe what they heard.
So that's why I'm really pretty aggressive about policing the comments /
Darren Saunders: Mmm.
Jennifer Gunter: / or I try to be.
Darren Saunders: Mmm. And, you know, this sort of thing comes at a price, but if we're not out there doing it, the space gets filled by these kind of people.
Jennifer Gunter: Right! Exactly, just like I said, these data voids. If we don't say something, there are people out there, people are going to go to the people who are having those discussions, and then what? Do we want Gwyneth Paltrow to be leading these discussions? Do we, you know, do we want Oprah to be leading these discussions? Or, you know, do we want people who are doing the research, so people who are committed to evidence based medicine having these discussions?
Darren Saunders: So that sort of advocacy, you know, you're really putting yourself out there, right? And it's very personal. And, you know, I'm no longer surprised, but often shocked at the pushback and at the level of vitriol that you receive. And when I say vitriol, that's a pretty mild form of it.
Jennifer Gunter: Yeah.
Darren Saunders: It can, you know, it can escalate into direct physical threats sometimes.
Jennifer Gunter: Yeah.
Darren Saunders: And that’s a lot worse when you're a woman. How do you how do you deal with that? How do you navigate through that? Because I'm sure, to a lot of people, that's a barrier to actually, you know, if we're talking to academics or students who want to, who are sort of dipping their toe in this themselves, that can be really terrifying and really hard to deal with, right?
Jennifer Gunter: Yeah. And I'll tell you, the worst attacks I get on Instagram are from other women. So, yeah, but it's, you know, because you're affecting somebody's bottom line.
Darren Saunders: Yeah you’re threatening their business model.
Jennifer Gunter: I mean, that's always what it is. Yeah it’s a business model. And, you know, sometimes I'll say something that's so, I think, so innocuous, and it just ticks people off. And I'm like, really? That was it? That was the one thing? But obviously, somebody is making money that way.
And so, yeah, it can be difficult. And sometimes I have to step back. And certainly, on my Instagram feed, if you see something like, oh, I made this cake, or here's this pretty flower I saw, it's because I'm like, okay, I need to, sort of, detoxify my feed for a day or two. And it's really, it does stop people from coming, that's the really interesting thing, that it's a very much this, sort of, what's there now, and so if something has kind of got out of control, just put up another post, and it really, actually tends to quieten it down.
Darren Saunders: To hack, the algorithm a little bit.
Jennifer Gunter: Yeah. But it's really, it is discouraging to see, when you see, you know, somebody who's spreading disinformation and maybe saying that, oh, you know, all women need to be on menopausal hormone therapy because it creates women leaders. Okay? So there's all kinds, if you want to take that thread... so you're saying if someone who has breast cancer, who's on a hormone therapy, who can't take estrogen, you're saying that she can't be a leader? Like, what are you saying about that? Are you saying that you can only be a leader if you have estrogen? Like, what, what are the implications of all of that? And I'm not saying people shouldn't have their symptoms treated. Absolutely they should, but to say that that creates leaders is… but that's an effective way to get attention, right? And that's an effective way to send you know, to have this sort of oversell, to get you know, to get the clicks and things like that. So then people get very upset when you challenge them.
Darren Saunders: Yeah…
Jennifer Gunter laughs
Darren Saunders: People don't like their business model being interrupted, right? It's interesting. I actually made a decision to avoid any form of this sort of stuff on my Instagram feed. That's just kind of /
Jennifer Gunter: Mmm hmm!
Darren Saunders: / my fluffy… pictures of… /
Jennifer Gunter: Safe space, that’s fine.
Darren Saunders: / Yeah, my safe space.
Jennifer Gunter: Yeah, yeah.
Darren Saunders: Instagram's my safe space. What about professional criticism? I mean, this is something a lot of people in this room will relate to, something I've dealt with over the years.
Jennifer Gunter: Mmm hmm.
Darren Saunders: Of being publicly out there talking about this stuff. A lot of people in my professional world think it's beneath a scientist /
Jennifer Gunter: Right.
Darren Saunders: / To be doing that. That makes them feel very uncomfortable that you're exposing yourself, or, you know, your field, to that sort of…/
Jennifer Gunter: Mmm hmm.
Darren Saunders: / scrutiny and criticism. How do you have you found that? Because I'm sure in North America and Australia is very different?
Jennifer Gunter: I don't… probably less than you'd think. Although we do have a lot of rejection pride from freedom of speech in the United States, but freedom of speech. So, so there's a couple of things. So first one, I got started in social media in 2010, like nobody, like no physicians were on social media. And, you know, I was told by several medical professional societies it was really inappropriate, because I swore!
Darren Saunders: Yeah, same, same.
Jennifer Gunter: I… /
Darren Saunders: Don’t swear!
Jennifer Gunter: / Swear! And I was like, you really mean – I'm gonna swear – you really mean people think doctors don’t fucking swear?
Laughter
Jennifer Gunter: Like, everybody's like my mother, never swore. But…
Darren Saunders: Personally I fucking hate it when people swear all the time.
Laughter
Jennifer Gunter: I know! Can you fucking believe that?
Darren Saunders laughs
Jennifer Gunter: Jesus fucking Christ. Anyways. So, so that, and I was like, okay, so I just said, you know, I'm not gonna follow your made up professional rules because I had nothing to do with creating those professional rules. So, piss off. And nothing ever happened. And at my work, it was kind of a really weird situation where they were like, well, as long as you don't ever mention us, then we're okay with it. And I was like, ok well there's this thing called Google. But okay.
Darren Saunders: Yeah!
Laughter
Jennifer Gunter: And so that was…
Darren Saunders: And funnily enough anti-vaxxers are really bad at using Google.
Jennifer Gunter: I know!
Darren Saunders: Laughs
Jennifer Gunter: It just, it's so, so, yeah, so that, that's how that started, and then, and, you know, it just became a very separate thing. And now, you know, there are lots of medical professional societies are encouraging people to be on social media. But I think it's also only if it's for you. Because, you know, everybody is specialized in science, like, I can't do heart surgery! I can't, you know, run a lab. I can’t, you know, run a, you know, I don't know western blot. I'm trying to think of names of things you do with labs.
Laughs
You know, I can't do any of that. And, and that's okay. We shouldn't have to do everything. And so if we have people that are good at science communication, then they should do that. And if we have people who are really good at doing western blots, they should do that. And I should know a little bit about how the western blot runs, and they should know a little bit know a little bit about science communication, but we should all think of ourselves as part of, kind of, the whole.
Darren Saunders: Yeah. I mean, one of the things I really like about your form of communication, for want of a better word, you know, advocacy, whatever, whatever you want to capture it by. Is because I relate to it, because I can relate to you. You're very… you share a lot of yourself in the way that you do it, right?
Jennifer Gunter: Right.
Darren Saunders: And when I first started using social media and first dipping my toe in this, I made a really obvious decision, that was a really clear decision in my head. I want to show people that scientists are humans.
Jennifer Gunter: Right.
Darren Saunders: So I'm going to talk about the bad stuff and the good stuff, and hopefully people relate to that, and then they might also listen to some of the other stuff I’ve got to say.
Jennifer Gunter: Right.
Darren Saunders: And it's clear to me that you, you sort of take a similar approach, but how much of that is strategic and how much of that is just the way you do things?
Jennifer Gunter: Well, my kids say I could sell anything.
Laughter
Jennifer Gunter: And, and, but everything in life is a bit about that. But so what I do on social media is, I kind of have the… and this was just an intuitive thing that came to me, but I feel it, it really works for me, because I don't have a product I'm selling. You know, I think that if people have products is different.
So one third is about my topic at hand. So be it women's health, gynaecology, you know, really, really, sort of, core. And one third is peripherally related, so science in general, and it could be any kind of science, but, sort of, that, that type of stuff. And then a third is completely personal, because people need to see you as a person. It really helps when you're listening to somebody, when, you know, when you understand where they're coming from, when you can understand their motivation. And so they'll kind of use that rule of thirds, and that's worked out, I think, really well for me.
You know, there's people who have Instagram accounts where it's only, they're only talking about science, or people, you know, do a lot more stuff with their families and other things. And I think people need to find the sweet, sweet spot for them. And then there's obviously people who, you know, it's all medical stuff, and every fourth post is whatever their supplement they're selling.
Darren Saunders: Yeah, so what about that, that particularly North America, particularly at the moment, the political debate is wrapped up in a medical misinformation debate, right? And so when you start commenting on a particular health policy or particular orange man, for example, you buy into a political debate, and people will sometimes only see it through that political lens that very, very rapidly becomes very polarizing. So how do you, how do you walk through that space?
Jennifer Gunter: Yeah, I mean, you know, it's so weird. When I lived in Canada, I would have probably been considered conservative, and in the States, I'm considered very liberal. I don’t really feel like my stance on everything has really changed. But in Canada, there's no abortion law, and people don’t have guns unless you're hunting. And so it's like, all the issues that, like, I kind of really care about. And, you know, we had marriage equality for years, like all these things that are just, you know, that are still being fought about in the states were just, like, not issues.
So for me, I mean, the problem in the United States, I think, even more than a lot of places, is health is very political. And when you have governments deciding what you get to do with your body. You have governments deciding, you know, where, you know, you can use state dollars to pay for procedures. You know, like, we have all these stupid rules about tubal ligations, and people have to, like, if they're they're getting their obstetrical care by the state, if you don't get their request, if they want a postpartum tubal ligation, it has they have to sign the paperwork between 30 and 60 days before, but it's so convoluted, the hoops… and and, and they might have come out of good reasons, because there were people forced into tubal ligations. But what happened 60 years ago isn't necessarily what's happening today. And so you have all these barriers, and it becomes really difficult to navigate.
And then we also have, you know, political forces, for example, birth control misinformation, a lot of it is funded by the right wing in the United States. So you really have a situation where the government has made women's health political. I mean, it's, it's political everywhere that there's a patriarchal system, but I would say more so there. And you know, when I'll post about it, I'll get people to, well, I'm just here for health care, and I'm like, well, you know, health care is political. How much money hospitals get is political. How much research dollars go to endometriosis versus Crohn's disease is political. All of these things are political, whether you want it to be or not.
And, you know, I think what you know, some people think about is that, you know, they would really just want to vote for lower taxes and pretend that those other things don't exist. And I think it makes people uncomfortable, because it gets, it starts to, kind of, get a bit close that maybe what they're doing is voting against their own best interest.
Darren Saunders: I found often the most – I was going to use the word violent – let's say, vociferous pushback you get is when you really get close to the truth /
Jennifer Gunter: Mmm hmm.
Darren Saunders: / and you really force people to reconsider what their base truth might be, or their assumed biases, or whatever it might be. And you kind of know you're over the target by /
Jennifer Gunter: Right.
Darren Saunders: / how right fierce the response is, right?
Jennifer Gunter: Oh, yeah. And I had a post up last week, where I listened to a fantastic podcast where they interviewed a professor – Susan Davis from Australia – who is like the GOAT when it comes to menopause, like, like, she's amazing. And it was a fantastic podcast, she's such a clear communicator. And I shared it, and I said, I think everybody should listen to this. And I said, I'm so pleased to see that, you know, I have the same opinions as Dr Davis about menopausal hormone therapy. It's indicated for this, but it's not indicated for prevention of dementia, heart disease. Oh, my God. The attacks and the attacks that I got, and people in there saying, no one ever says that! I'm like, oh, so you're gaslighting me? Hmm?
Darren Saunders laughs
Jennifer Gunter: And so …
Laughter
Jennifer Gunter: And, and just this whole, like it was, and of course, there's all these doctors and coaches who tell people that, and they use that fear based model to build their practice. And I'm just like, what world are we in where this is getting people upset? I mean, and then I'm like, well, you can quote all the research you want, but you know who was done by, Susan Davis.
Darren Saunders laughs
Jennifer Gunter: Just saying. So you're saying she doesn't know her own research? I'm just saying.
So, yeah, I mean, it just it was, and it's because it was, obviously it was true. And of course, somebody commented that, oh, well I see all the people commenting how you're incorrect, that I've seen that on other feeds. So because, yeah, it's when you're right close to home, hat's what gets people upset.
Darren Saunders: One of the conundrums I've been trying to get my head around for a long time in this space, when you look at surveys and measures of trust, so you look at, you ask people, who do you trust? And doctors and scientists are almost always right near the very top of that list.
Jennifer Gunter: Mmm hmm!
Darren Saunders: Celebrities are always right near the very bottom.
Jennifer Gunter: Right.
Darren Saunders: And yet, we have celebrities out there having this, you know, incredibly influential voice in this space. And I really have trouble putting these things together. And one of the things I'm interested in, and I'd really like to hear your opinion on this, is how much of this is coming from people being let down by their interaction with the medical system? So we were talking about equity access. Equity of access, how much of it is disappointment? They can't either can't get access to the information they need, or they go to see a doctor or medical professional, and they don't get the care they need or the information they need, so they turn somewhere else. How much of that is part of the problem?
Jennifer Gunter: I think that's a big part of the problem. Absolutely. I mean, like, for example, in Canada, like 20 million people, oh no, it can’t be 20 million, that'd be like two thirds of the country. Kind of like, if 8 million people don't have a primary care provider, right? So, you know, so there's huge structural problems. In the United States a lot of people don't have access to health care, and people, people show up and they get, they might get bad information, but, and they're told that they this treatment would be wrong for them when it's, when it would be the right treatment. So that's part of it.
But I think the press, especially in America, bears a huge responsibility, because they could talk about the great physicians who are doing this kind of research. They could talk about… but, you know, if a celebrity talks about it, then it becomes on the front page, right? Or then it becomes something important. Because, you know, they're funded by page clicks, just like everybody else. And the algorithm, celebrities have 15 million followers, right? Versus a scientist who might have 14,000.
So, so you have this, like, this absolute, unequal playing field, right? If a Kardashian is selling a product, all of a sudden there's like 20 stories about it. And we know that repetition breeds accuracy. So you know, whatever, one, I don't even know all the Kardashian names, they all begin with a K, right? So one of the Kardashians will, like, have some, like, vagina gummy and then all of a sudden I get like, 20 reporters wanting a quote on that. And I'm like, What is wrong with you that you want to interview me about a clearly scammy product being sold by whatever Kourtney Kardashian! Who cares what she's selling! But they care. And so you have that blaring out, and they are the mega influencers, right? People want to be like them. So I think it's, I think it's all of those things.
Darren Saunders: But then you’re hit with the problem that people like you and I face often is just by responding to it, you're, in fact, giving it oxygen and giving it standing, so… but if you don't respond to it, you're also letting it out there unchallenged. How do you… how do you decide when is appropriate to really fight something and when it's appropriate to go, you know what? That is so fucking crazy, hopefully people will see that.
Jennifer Gunter: Yeah, so sometimes I'll admonish a reporter, and I'll say, you're really going to write about that? Like you're really going to write about that? And it might be the way they ask the question, because sometimes they're really great and they're like, look, we know this is BS, and we want to get ahead of it and do it in a good way. But sometimes, you know, they'll, it won't be and I'm like, I'm sorry, I just can't, and sometimes you… take, you, you know, if you're… you can take stands that actually can affect you professionally.
So when Roe versus Wade was overturned in the United States, the CBC in Canada wanted me to come on and talk about, you know, what the implications were, and what those also might, you know, what, could there be any kind of fallout for women in Canada? What might we see? And I saw that they were having another guest who was, you know, the head of the pro life organization in Canada, which is forced birth, right? And I'm just like, I'm not going to be on a show and have that person positioned as my equal, because they lie, their only position is to lie to women.
So what you're saying is, if we're both on the show as guests, that we're the same, and we're not, that person is a professional troll who lies, and I'm an ethical evidence based physician, and I will not be on the show if you're going to feature them. So if you want to just have me, and I can talk to you about it, because it's all evidence based, it's not just me making it up. We know what happens when abortion laws happen. We know what the consequences are. And you know, the physicians who trained me, trained in Canada before there was abortion. I know all the things that happened. And… and I'm not gonna be on the show. And so they said, okay, and they got somebody else, and that person was completely blindsided, because they had… it was a last minute thing, and they hadn't had chance to look it up, and they were devastated that they'd been on the show with that person. But, you know, the press and I wrote this nasty email, and I put the email out in public, and I was just, I don't care if I never get on the CBC again. Like, that's absurd. And of course, you know, I'm, like, a big name in Canada, so of course, I was on the CBC again, but…
Laughter
Jennifer Gunter: But, but you also have to use your clout when you can, right? Like, like, I really didn't care. Like, I had another book coming out in four months. I could have sucked it up and it's gone on the show, but I didn't care. I would… I could not have slept with myself if I had gone on that show and positioned that awful human being who knows nothing about science, has never cared for a woman the day of life, has never done an abortion, has never counselled anybody about it, and they have them positioned as being equal to me.
So yeah, sometimes you take the consequences, you know, I turn down all the scammy podcasts. Like, I, like, people are like, when are you going to be on Huberman? Oh my god, absolutely not. You know, so, but there are people who will be on every single one of those, because it's reach and attention, and at the end of the day, you have to decide, you know, what can I live with? And I couldn't live with myself being on some of these, you know, scammy podcasts, and I've been on some very big name podcasts that then decided not to air the episode because I said things the celebrity host didn't like. And maybe one day I'll get a little drunk and tell you all about it.
Laughter
Jennifer Gunter: Because there's now three…
Darren Saunders: We might work on that tomorrow Caroline /
Laughter
Darren Saunders: / that strategy.
I want to ask you, I'm going to talk a little, a little bit about what you've found effective and not effective, but that notion of getting in front of a story, I find, personally, to be one of the most effective ways to stop the thing coming out in the first place.
Jennifer Gunter: Yeah.
Darren Saunders: So I used to have a running bet with one of the producers on ABC, which is our equivalent of CBC, who produced The Health Show. And we had a running bet, I'd say, this is coming out tomorrow, guaranteed this will be a huge misinformation story. And he would, yeah, you're right. I'd get on top of it first and try to kind of squelch it /
Jennifer Gunter: Yes.
Darren Saunders: / before it got out of the box. And it was really interesting for me to reflect on how effective that strategy is. It's a lot less work. You know, it's that asymmetry of bullshit. I'm swearing a lot now that you've mentioned swearing!
Laughter
Jennifer Gunter: Yeah!
Darren Saunders: This asymmetry of bullshit, right? That it's much easier to stop it getting out than it is to try and fight it. And much more effective and efficient.
Jennifer Gunter: Well, you know, people who swear more and more intelligent, too.
Darren Saunders: I know there's evidence for that.
Jennifer Gunter: There's good evidence based evidence for that.
Darren Saunders laughs
Jennifer Gunter: No, absolutely, it's called pre bunking!
Darren Saunders: Yep! Yep.
Jennifer Gunter: And it works. So absolutely. People want the information. Getting out ahead is very effective. And so… and it can be really hard, like I work, you know, I work in the office three and a half days a week. So when there is some stupid story that I, you know, I know is going to come out, I'm like, sometimes I’ll be up all night writing a post to get out and get ahead of it. But I know it really makes a difference. And so it can be really challenging. And that's why, again, the good reporters are like, oh, I got this off the wire, and I knew, if I just asked you, I get some good quotes so I can, you know… so you start to learn, like, you know, who's interested from a fact based… but also, you know what? Sometimes those stories don't get the attention. And then, you know, there's a follow up with a, you know, a junky story about it, because, because, you know, they want the attention.
Darren Saunders: Mmm.
I want to talk about conspiracy theories a bit in a minute. But you've already touched on this a little bit. I often find myself wondering how much of what these people are selling they actually really believe. And you know, there's some interesting evidence around psychological traits of people who buy into conspiracies /
Jennifer Gunter: Mmm hmm!
Darren Saunders: / and buy into misinformation around hubris and narcissism and things like that. What do you think, in your experience, how much of this stuff is just basically cynical disinformation – I'm just saying this because I know I can sell something – and how much of it is people who truly believe that they have found an answer to something, and they are truly trying to help people?
Jennifer Gunter: Oh, I think when the dollars start rolling in, it's easy to believe your own press. I think that, um, there are people who are like, yeah, I'm going to sell this product. I'm gonna take advantage of it. And maybe they're sort of believe it or not, like, I think Dr Oz would be like the best example of that, right? So he was, you know, a respected cardiothoracic surgeon. And then, you know, the you only get the attention by selling the magic green beans, and we're talking about those, and all that kind of stuff, you know? And you know, then, now he's on Fox News, right? Which is, you know, a dumpster dive of, you know, trash and conspiracy theories. So you see that kind of like progression.
So, you know, and he would have awful people on anti vaccine conspiracy theorists, and that kind of, like he would associate with all these people, which then elevates them, right? So, so I think that, I think once you start making a lot of money, and these people all have this kind of hubris, so of course, you're right! And, you know, how could you be wrong? And your product you're selling is the best, so it has to be otherwise. I mean, I don't understand how people… then they'd have to just be so, like, obviously it's unethical to do that, but if you actually know your product is garbage and you're out there flogging it, then that's like, a different kind of sociopath, right?
Darren Saunders: Yeah! It’s hard to wrap your head around that, really.
Jennifer Gunter: Yeah!
Darren Saunders: Yeah.
Jennifer Gunter: So I think that people start believing their own press because they're just, there's the money.
Darren Saunders: Yeah.
Jennifer Gunter: It just becomes too much.
Darren Saunders: Yeah. I want to ask something slightly controversial, in this audience it's controversial anyway. How do we deal with the problem of misinformation coming from within academia and medicine? So predatory, publishing, research fraud /
Jennifer Gunter: Yeah!
Darren Saunders: / and paper mills.
Jennifer Gunter: Yeah.
Darren Saunders: How do we stand on a soapbox and say, stop telling porkies, stop spreading misinformation, when, in fact, we haven't cleaned up our own house yet?
Jennifer Gunter: Oh, I think it's a huge problem. I think that the fact that I don't think that predatory publishers should be allowed to be on your CV at all, and and I think that it shouldn't take, you know, 10 years to uncover research fraud, and, you know, I think it's Elizabeth Bik, right? Who does all this great work.
Darren Saunders: Yeah, amazing!
Jennifer Gunter: Yeah. And it's like, why doesn't every university have an officer like that? That's dedicated to that? If people, people are allowed to get away with it, you know, it's super… never mind, like they're wasting research dollars. Like, you know, there's been all this… and this is my area of research, but there's been all this discussion about, you know, Alzheimer's, and what's actually, really, you know, how much of what we, sort of, believe is based on some bad papers, that actually there was research fraud. And so, you know, you can derail decades of research.
So I think the repercussions need to be swift. But the problem is, you know, there's Dean's taxes to pay, and there's money to come in, and I think that we need to be able to hold ourselves, you know, we need to clean up our own house. We need to clean up fast. Like, you know… because these predatory publishers are just coming up and up and up, and, you know, maybe they start out okay, but they have a long term plan, and you're like, you know, now you've got MDPI, and they're publishing… you know, there was an, they published a paper about how to determine if somebody had used, you know, mifepristone and misoprostol for an abortion, and what would be the only reason to determine that is if you were trying to arrest them, right? That would be only purpose of that research. People don't get sick from those drugs, we don't need to know the levels. Like, there's no reason /
Darren Saunders: No medical reason for that.
Jennifer Gunter: There's no medical reason to do this research. And so these really, like unethical people can also use that. Like a lot of these junk journals are used in the laws in the United States. So there’s these other repercussions as well.
Darren Saunders: So just in the last few minutes before we go to question and a. I just want to do a little bit of reflection, and I don't know if you do this, I often will find myself thinking and wondering how the effort that I put into doing communication of this stuff and trying to fight misinformation, how effective it actually is.
Jennifer Gunter: Mmm hmm.
Darren Saunders: And thinking about what's worked and what hasn't. So I'd really like to hear your thoughts on maybe the most effective thing you've done and why it was effective.
Jennifer Gunter: Oh, the most effective thing that I've done. Well, I mean, probably the most effective thing was getting on social media.
Darren Saunders: Yeah.
Jennifer Gunter: But that's kind of like a big thing. But yeah, I think getting out there and telling people that, you know, that you deserve to have answers, that people should be able to answer your questions, that you may not be aware you need to have this level of information, this you know, you're missing this background knowledge to ask these questions. So yeah, I think it's kind of the whole thing. I don't think there's probably any one thing. I mean, it does, at times get a bit, you know, sometimes I'm like, I'm like, fuck, and I can't do this anymore. And my husband, he keeps screenshots of lovely comments, and then he'll text them to me, and he’d be like, did you know that this person, you said that she saved your life from cancer because she knew to go in, because she was being dismissed about her postmenopausal bleeding, and she knew to do that. And she doesn't have… she didn't die of cancer because of you. So, so he's actually… he does that. He sends me those little things.
Darren Saunders: And that's actually, like, it's actually, it works, right?
Jennifer Gunter: It does work.
Darren Saunders: I do that for friends. It's a tip. If you've got friends who are out there doing this sort of stuff, even if your friends write a nice paper, it's good to tell them.
Jennifer Gunter: Yeah!
Darren Saunders: Because you often put this stuff out there and never hear about it again, right?
Jennifer Gunter: So it's, you know, so it's really, it's, it's… because you think, well, you know, what is a few hours of no sleep, sitting up, writing a post, if that helps somebody prevent them from getting cancer? Like, that's nothing! Like, I, that's the smallest thing I could do for that. So, so, yeah. So I think that's what, you know, keeps me going.
I think that you have to realize that your audience isn't going to be everybody. You cannot change everybody's mind, and people will come to you when they're ready, but there's plenty of people who want to come to you, who can be helped. And so you don't want to think about well, because I'm not reaching everybody. I shouldn't reach some people.
Darren Saunders: Yeah. So I can't ask you that question without asking the converse question, what have you learned about mistakes that you might have made, or things that you've changed the way you approach communication, or things that you do differently now that you used to do then?
Jennifer Gunter: Well, I'm actually not sure I've changed that much, except I'm more aware of what I think is going to be a controversial post, and I sort of think about, you know, do I have the bandwidth to deal with that right now? So I would say that's probably the biggest thing that I do is decide, am I, you know, am I ready to pull out the baseball bat? Or am I not ready to pull out the baseball bat?
Darren Saunders: Yep, yep.
Jennifer Gunter: But no, I haven't changed. I mean, also have people saying, oh, your tone is so mean. I'm like, oh, would you say that to a man? Probably not. And so, yeah, you got to be who you are. And that's why, you know, when people meet me, they're like, you're just like I thought you'd be! Yeah, because, like, It's too, too much work to be somebody else all the time.
Laughter
Jennifer Gunter: I’m too lazy!
Darren Saunders: It is a lot of work, right?
Laughter
Darren Saunders: And the emotional energy sometimes you just don't have it.
Jennifer Gunter: Yeah.
Darren Saunders: Yeah.
Jennifer Gunter: I don't know how people keep like, two personas. I'm like, ugh, I don't have time for that.
Darren Saunders: All right, I'm going to turn to the questions. And we have actually got some really good questions here. Okay, let's start with this one. I think this is a really good one, actually.
As someone in my 20s, how do I navigate medical misinformation with my friends who engage with pseudoscientific influences without affecting my relationships with them?
Jennifer Gunter: Yeah, so that's a really great question! So you should know that one on one conversations are probably the most impactful. And so, you know, what you want to do is maybe look for a moment where you can just say something, nothing critical, nothing you should do this. You can say, I heard and, you know, just leave it at that. You want to, kind of, open that line of communication, because if you go on full bore, like, oh, I can't believe you're not getting your vaccine, like, then, then they're not going to hear anything from you. So you kind of want to take that soft cell slow approach.
Darren Saunders: Yeah, it's a really tough one. I've lost a couple of friends over the years because of this.
Jennifer Gunter: Yeah.
Darren Saunders: You know, things, there’s certain things that are just so polarizing that it's almost impossible /
Jennifer Gunter: Right.
Darren Saunders: / to get past it.
Jennifer Gunter: You could also say, oh, wow, you’re really interested in knowing more about hormone health. I actually heard about this really great doctor, and she has these books! And all right, here I give you this book as a gift, I'm just saying.
Laughter
Jennifer Gunter: Or you can sign up for her blog, where 80% of the content is free! So, you know.
Darren Saunders: Here's a really interesting one, I think that's kind of been asked in a couple of different directions. How do we combat misinformation in the age of AI and ChatGPT /
Jennifer Gunter gasps
Darren Saunders: Deepfakes, bots, humans can only do so much in the face of that.
Jennifer Gunter: Yeah, I don't know if I have a good answer for that, because some of the deepfakes are… a friend of mine, who is PhD researcher in sexual health, sent me a video four days ago of her. She's never done that video, with her voice, but she's never done that, advertising a scammy supplement for sexual health. And so if you didn't know that, because I could tell it was a little bit stilty, but it was pretty good. If you didn't know, you'd see, oh, that's Dr Lori Brotto, and she's a world expert in this!
So it's problematic. I think that people again, it gets back to always fact checking. You've got to fact check everything.
Darren Saunders: So here's a great follow up to that. How do you identify misinformation?
Jennifer Gunter: So, you know, identifying misinformation be really hard, especially when it's not your field, right? I mean, I'm sure I've repeated all kinds of things about airplanes where I'm completely wrong, right? So I think that it's important to say, okay, is this something I should know about or something I, you know, is this my field or not my field? And I always tell people, you want to get two independent verification sources. So you should, if it's about, if it's a medical topic, there should be information on a medical professional site from, you know, Royal Society, from the government that says that. And then you should be able to find something else, maybe from a university that also says that same thing. And if it's not, you can't get it from two, sort of, respected sites like that, then you might want to really start questioning whether or not that's true, but you've got to fact check everything.
Darren Saunders: Yeah, there's actually a great tool I use that I share with students when I teach about this stuff that is done by a guy who runs a website called compoundchem. I'm sorry I forget his name, but he has put up this great resource on, you know, the 10 red flags /
Jennifer Gunter: Yeah.
Darren Saunders: / of miscommunication or misinformation. It talks about looking at, you know, why is someone telling you this?
Jennifer Gunter: Right.
Darren Saunders: Do they have a conflict of interest, or do they have some kind of /
Jennifer Gunter: Right. /
Darren Saunders: / you know, financial stake in this? Is it, you know, what are the various biases that might be there?
Jennifer Gunter: Right.
Darren Saunders: Is it a, you know, randomized trial? Where's the information coming from? There are some really good online resources for that kind of thing.
Jennifer Gunter: Yeah, I also tell people, like, you know, if the person sells a supplement, they're not a reliable source of medical information, even if they're talking about something different, because everything leads back to the sale, it really does. And if they're trying to lead with fear, and they're trying to scare you, like, if a product was really scary, like it was like an emergency thing, you would… it would be in the newspaper, it would be on the news, like it would be everywhere, it wouldn't just be on this, like, influencers feed.
Laughter
Darren Saunders: Yeah, it's amazing how often, when you start digging behind some of the more you know, high profile sources of misinformation, you don't have to look very hard to find their website where they're selling you the bottles of pills.
Jennifer Gunter: Ugh! So supplements really fund misinformation. I personally believe that if we regulated supplements like we regulate pharmaceuticals, that we would get rid of about 80% of medical misinformation, because people who believe conspiracy… the more conspiracy theories you believe, the more likely you are to buy a supplement. And so people who sell supplements need conspiracy theories, and you always see the emergence of that language, right? So just to keep that in mind that you know, why are you know, it's probably different here versus in the United States and in Canada, but, but the lack of ability to regulate supplements like pharmaceuticals is really a massive detriment to the population.
Darren Saunders: Yes, it is. It's shocking, really, how easy it is to sell.
Jennifer Gunter: It’s shocking how it's allowed. And you're like, okay, you have a completely different political system than we do, and yet we you still have the same problem. Like, how is that? Why can we not regulate this enterprise in the same way? There’d be tons of money to be made. Like, force them to do the testing! Like, they would all drop out. Trust me, nobody needs, like, this hot flush formulation that has green tea leaf extract, which causes liver failure, by the way, so don't take anything with green tea leaf extract.
Darren Saunders: Do you think – this is a good question – we kind of touched on this, but let's dig into it a bit deeper. Do you think you get more vitriol because you're a woman?
Jennifer Gunter: Yeah, I think so. Probably. People, you know, it's, but, you know, kind of used to it. I was, like, in surgery, so I don't really kind of notice it sometimes. People will be like, oh, they were so mean to us! Like, really? I didn’t notice that. Also, my mother was really mean too, so, she really was! She was very nasty person, and so and so, when people sometimes say something mean to me, I'm like, really, that's it? That's all you've got? Like, you can't do better than that? That, that's the insult? So, yeah, I mean, I think people do, but it's partly because, you know, I'm getting close to the source of the money.
Darren Saunders: Yeah, yeah.
So, you know, back to this notion of regulating supplements. What about regulating information? So, there's a great question here about whether or what the role of governments might have in implementing stricter regulation on the claims that can be made, not just the products that are being sold, but the things people can say. And this is an interesting point of discussion, because where you come from, you have this constitutional freedom of speech issue, that we don't have that in our constitution here.
Jennifer Gunter: Yeah, so…
Darren Saunders: So is there a role for that? Or does that in sometimes, in fact, make it worse, because people think stuff's being hidden from them?
Jennifer Gunter: No, I actually think there is a place for the regulation. So for example, if you look in the UK, they have advertising standards, so, and those actually apply to supplements and doctors selling products and things like that. So it does…
Darren Saunders: Cancer Act as well, right?
Jennifer Gunter: Yeah.
Darren Saunders: Which is really strict around cancer claims.
Jennifer Gunter: So that does limit what can be said. So it's still, things are still a problem there, but it prevents, I think, a lot of this… the really bold claims. So I think that, I think there's a role for regulation there, from, you know, what can be said about a claim. But, like, in the United States, so supposedly, if you have a supplement, you're allowed, you can't make a claim of efficacy, but you can dance around it by saying it improves ovarian health, which, like, means nothing. That's like an absolute… it's a medically meaningless term, but it's medically adjacent! So it sounds like, ooh, doesn't want to improve their ovarian health, right?
So, so they use these terms, but sometimes they'll make bold claims, like, reduces your risk of osteoporosis. You can only say that if you've got a, you know, if you're FDA approved drug. So what happens? They send an anemic warning letter. Oh, you have, we've detected this language. Literally nothing happens. That's it. They don't shut people down. There's just, they're just warning letters. And some of these companies have 20 or 30, the only time something happens if a product ends up killing somebody and then a district attorney decides to file criminal charges, you know? Or even you know, or even, you know, we've talked about predatory publishing, so OMICS, right? They're, like, huge predatory, they got some fine from the federal government in the US, like, three or four years ago of over, like, fifty million dollars and I don't think they paid it! So… /
Darren Saunders: They just laugh in the face of it.
Jennifer Gunter: / yeah! So, so if you don't have any teeth, like, if there's nothing that's going to happen, then what's a warning letter mean?
Darren Saunders: I've often found the intersection with the legal system in this space to be really deeply ironic. You know, you've probably had this too, where you get letters threatening defamation suits and things like this for countering /
Jennifer Gunter: Right.
Darren Saunders: / the bullshit. Yet the people who are selling it never ever seem to get the threats, /
Jennifer Gunter: Right.
Darren Saunders: / or the or the threats of legal action. It's kind of deeply ironic, really.
Jennifer Gunter: So I probably get less, because I'm in the US, /
Darren Saunders: Right.
Jennifer Gunter: / you know, you can say anything, pretty much.
Darren Saunders: Great fun! You should really try it sometime.
Jennifer Gunter: Yeah. And, and then I live in California, which has incredibly strong anti slap legislation.
Darren Saunders: Yeah.
Jennifer Gunter: So that is something that more countries could do, is have incredibly robust anti slap legislation so people can't file these, like, you know, nuisance suits against you for saying something.
Darren Saunders: Yep.
Jennifer Gunter: And, I mean, that is something to be very, very protective. And then I also have a fantastic First Amendment lawyer. Who, who begins every letter, by… “I’m sure you are aware of the Streisand effect”, and, uh…
Laughter
Jennifer Gunter: And they all /
Darren Saunders: That’s a good start, I’m gonna use that.
Laughter
Jennifer Gunter: It's very, very good. So it's only happened a couple of times, and it's from supplement companies, you know. And I'm like, I love to have, you know, you know, go to disclosure with you so you can tell us about your studies.
Darren Saunders: Yeah, yeah.
Jennifer Gunter: But you know, you don't want to get involved in litigation.
So, fortunately, it's very infrequent, but I imagine it's… especially, I've heard from people in the UK, well, because they have very strict libel lots there.
Darren Saunders: So, here we have quite a, I would say our system is quite open to the plaintiff. So there's a, really, it's interesting actually.
Jennifer Gunter: They're probably more like the UK here.
Darren Saunders: Yeah, yeah, I think so.
Jennifer Gunter: Yeah, in Canada, it's a little more… they have. They're getting stronger anti slap legislation. So it's a little bit, it's a little bit different.
Darren Saunders: Yeah, I've actually had suits come from the UK via America, because they were trying to sue me in that market.
Jennifer Gunter: Right.
Darren Saunders: Because talking to.
Jennifer Gunter: Right. Ugh.
Darren Saunders: It's pretty shocking the first time it happens. You go and get used to it after a while.
Jennifer Gunter: Yeah, no, it's just, but it's really awful, because you think people are out there just trying to correct this, so the person can say whatever they want, they can lie about their supplement, make all that stuff up, and that's not illegal. Somebody can get liver failure from taking your supplement, and that's not illegal. But me saying, hey, don't drink lily of the valley tea because it's poisonous, is, /
Darren Saunders: Yeah.
Jennifer Gunter: / you know, somehow problematic?
Darren Saunders: Yeah.
So one more question has just popped up here on the end, and I've got one to finish with for you. We kind of touched on this earlier with pre bunking. Do you think there's a need for science and medicine to oversell, to combat misinformation? So to adopt the methods of the enemy, and what are the risks of that?
Jennifer Gunter: Yeah, I think that it… that could be a very slippery slope. I'm very mindful of slippery slopes, and I think that it's very easy to say, oh, well, I'm just using the same tactics, and this and that. Every now and then I'll do a headline like, what they don't want you to know. But this /
Darren Saunders: Yep, yeah.
Jennifer Gunter: / kind of, like, like, more tongue in cheek, and I think everybody gets that. But that's as far as I'll go. I would, I think that you can adopt the same methods in that, you're on social media, you're using the same tools, you're trying to, you know, to maybe use even some of the same language that, because it's the language that works. But I think that it's very, very easy to, kind of, you know, I would never oversell something, and that's part of the problem. If everything they say is fantastical and everything you say is, well, the best available science says! It just doesn't sound as good.
Darren Saunders: You're almost fighting with one arm behind your back, right? Because of the way we use qualified language.
Jennifer Gunter: Yeah!
Darren Saunders: It’s challenging.
Jennifer Gunter: It's very, you know, everybody loves certainty, right? And so I can't say for 100%, you know, certainties. So with anything nobody, nobody can really!
Darren Saunders: Yeah.
Jennifer Gunter: So, and that's something a red flag to get, you know, to teach people about. If somebody is really that certain, then, you know, they're probably not in science.
Laughter
Darren Saunders: So I want to wrap up with a… I want to ask you to look into your crystal ball. And we talked about, you know, trying to flag stories coming down the pipeline. Where do you see the next big sort of front in this, in this fight that we're in? Where do you see that coming from?
Jennifer Gunter: Oh, well, I think from a reproductive health standpoint, I see right wing funding. I mean there's the amount of funding that, kind of, goes into this, sort of, birth control pill disinformation on social media is really quite shocking, and not something I would ever think about. But, you know, I think that, sort of, dark money funding different things is probably the next, sort of, level of disinformation. That, and probably AI generated content.
Darren Saunders: Yeah.
So, with that in mind. You know, you talked about the need to regulate supplements. If you had the giant lever to pull and money was no object what’s the thing you’d change? To try and get in front of this problem? Because it is, it’s a growing problem, right?
Jennifer Gunter: Yeah, I would absolutely be requiring supplements to have the same efficacy, or to have the same, pass the same studies, the same bar, you know, the bar that the FDA sets. So, you know, to be a licensed medication. I actually think that that would, from a medical standpoint, would cut through a lot. And I also would make it easier for people who have been victimised by products to pursue litigation.
Darren Saunders: Yep.
Jennifer Gunter: So, because in the United States, that’s what actually works. And now, companies of course can then shut down and move. But, you know, to actually hold the person who owns the company responsible. So, what they can do is like, oh well, you know, I’m just going to close this company and open another one. So go ahead and sue that company that doesn’t exist anymore. But I, would change the legislation so that the person who owned the company would be personally responsible for the litigation.
Darren Saunders: Personal responsibility I think is a good way to round /
Jennifer Gunter: Yeah.
Darren Saunders: / this conversation out actually.
Jennifer Gunter: Yeah!
Darren Saunders: We are out of time, everybody please join me in thanking Jen for sharing so much of her reason with us.
Centre for Ideas: Thank you for listening. This event is presented by the UNSW Centre for Ideas, UNSW Medicine and Health and UNSW Science as a part of National Science Week. For more information, visit unswcentreforideas.com and don’t forget to subscribe wherever you get your podcasts.
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Jennifer Gunter
Dr Jen Gunter, originally from Winnipeg, is an internationally renowned OB/GYN. In addition to her most recent book, Blood: The Science, Medicine, and Mythology of Menstruation, she is the author of the two New York Times bestsellers, The Vagina Bible and The Menopause Manifesto. She is the host of the CBC docuseries Jensplaining and her TED Talk on menstruation was the third most viewed TED Talk of 2020. She’s been called the internet’s OB/GYN, and one of the fiercest advocates for women’s health. Her mission is to build a better medical internet because to be empowered about health, one must have accurate information. Her writing has appeared in various publications, including The New York Times, Dame, The New Republic, and The Guardian. She runs a blog called The Vajenda, and her medical practice is in San Francisco, California.
Darren Saunders
Darren is a Eureka Prize winning scientist and communicator, with over 20 years of academic and industrial experience in cancer biology and neuroscience in Australia and North America. Darren is a public advocate for gender equality in STEM. He has worked with former Australian Sex Discrimination Commissioner Elizabeth Broderick and Co as a senior advisor and data expert on numerous workplace cultural reviews, examining the nature and prevalence of sexual harm, bullying, racism and other forms of systemic discrimination in a range of organisations in the mining, aviation, education, arts and law enforcement sectors.
Darren is a regular commentator on television and radio, and resident scientist on ABC TV’s The Drum and Channel 7’s Daily Edition. He is currently NSW Deputy Chief Scientist & Engineer and Executive Director of the Office of the NSW Deputy Chief Scientist & Engineer, and Adjunct Associate Professor in Medical Sciences at the University of Sydney.