PERITIA Podcast: The Trust Race
Hosted by Shane Bergin and produced by Shaun and Maurice, this six-part limited series delves into scandals and controversies that have impacted our trust in science – even prior to the pandemic. Through conversations with journalists, scientists, philosophers, lawyers, and activists, Shane navigates the listener through the complex nature of trust. The podcast is based in part on the PERITIA lecture series, [Un]Truths: Trust in an Age of Disinformation, which is also now available in podcast form.
Each episode explores some of the pivotal moments that have shaped trust in science, whether they be vaccine inequity during the pandemic, the historical misrepresentation of the dangers of smoking, or the Reagan administration’s deliberate inaction during the HIV crisis. The series touches upon topics that affect all of us, regardless of class, gender, ideology, or geography. From the climate crisis to the ‘Free Britney’ movement, this podcast has something for everyone.
- Episode 1: Please Wear a Mask
Despite being a simple intervention to reduce the spread of COVID-19 mask-wearing became political, and people protested against wearing them. How did this unfold, and why did it happen?
Guests: Alok Jha and Heather Douglas
Episode 2: Protect Yourself
The HIV/AIDS epidemic was met with government inaction, because it was primarily impacting the LGBTQ+ community—so the community took control of its own public health.
Guests: Sarah Schulman, Will Nutland, and Tara Roberson
Episode 3: Thank You For Not Smoking
When tobacco companies faced a reduction in profits, they paid scientists to misrepresent the real dangers of smoking. How did this happen, and what compels a scientist to lie about their data?
Guests: Naomi Oreskes and Elisabeth Bik
Episode 4: Have You Been Vaccinated?
COVID-19 vaccines are a product of science and business, and they are only available to countries who can afford them. We explore vaccine inequity, and the impact of racism, capitalism, and politics on public health.
Guests: Achal Prabhala, Maya Goldenberg, Tiffany L Green, and Jahnavi Phalkey
- Episode 5: It’s Okay To Ask For Help
The conservatorship that Britney Spears was placed under—and the ‘Free Britney’ movement to release her from it—drew attention to overreaching mental health laws that represented a Disability rights issue.
Guests: Haley Moss and Emma Farrell
- Episode 6: Save The Planet
Climate change is one of the biggest global issues we are facing, yet governments are slow to act. Whose knowledge is being valued, and how are politics getting in the way of progress?
Guests: Rose Roberts, and Hannah Daly, Heather Douglas
Presenter: Dr Shane Bergin
Guests: Alok Jha and Prof Heather Douglas
This is a series about scandals and controversies that have impacted our trust in science. I’m Shane Bergin. I’m a physicist, and I’m a science communicator. And I’ve had a career of talking to students and the public about science, and I love doing it.
In recent years, though, I’ve recognised that while many of the big issues facing our society have a scientific component, they’re not just science issues. You think about climate change, you think about biodiversity loss, or you think about new ways of generating energy. All of these things have a scientific component, but they’re not just about science. They’re socioscientific. They involve people. They involve people because people have to act on those issues. They have to trust the scientist, they have to believe what the expert is saying. And that’s complex.
In this series, we’ll explore six different controversies in science. Six times where a scandal has happened. My hope is that if we can better understand when trust is broken, or experts are not believed, or experts are not acting in the best interest of the public, that we can learn how to better approach socioscientific issues for the future.
Science stories are usually framed as unthreatening, apolitical, completely uncontroversial, “and finally…” type stories in the news. This wasn’t the case, when it came to COVID-19 over the last few years. It was something that impacted absolutely everyone’s daily lives. We all became familiar with immunologists, we became familiar with terms like ‘antibodies’ and ‘T-cells’ and other things that scientists would normally be speaking about. And of course, at the start, we were all very interested in masks, where to get them, how to wear them, should we wear them, do they work, etc. And, of course, what made it interesting from a science communication point of view was that the science wasn’t completely settled on masks at the start. It wasn’t clear around how they would work and whether they would work. And so I was curious to see how journalists covered this evolving story during COVID. And I spoke to one in particular, a guy called Alok Jha at The Economist, whose coverage I thought was absolutely excellent right throughout COVID.
For a long time, science journalists have always been the people who do the good news stories in newsrooms there – as in you know, there’s, there’s a new star discovered or a new cure for cancer, or, you know, some amazing thing about the world we’re finding out. And it’s generally speaking, the good news stuff, and it’s, you know, the stuff that makes you feel better. But underneath all of that, what we’ve been really doing is trying to understand how to read scientific papers, work out what’s true very quickly, build up contacts with people who spend their entire lives looking at just one molecule in the cell, so that we know and we know who to trust. And when COVID came along in March, February/March 2020, it presented initially, as just any other story – as a science story here. Here’s some case studies of bizarre new condition, disease that was coming out of China. And so, you know, we covered it in this sort of sceptical way that we always cover stories, which is that this could be potentially dangerous, but you know, not no, no need for panic. And we’re going to look for scientists to tell us what’s happening and we need to make sure that we’re speaking to the right scientists and as the story became much, much more serious and important, what we found ourselves doing as science journalists every single day was becoming a core part of the newsroom.
Archive News Audio 4:04
Out of growing concerns about the deadly Coronavirus officially hitting the US here’s what we know. A Washington State resident fell ill after returning from Wuhan, China, where the outbreak began. Officials now say more than 400 people have been sickened and nine people have died.
The World Health Organisation has officially called it COVID-19: ‘CO’ for Corona, ‘VI’ for virus, ‘D’ for disease, and ’19’ because it started last year.
One person with Coronavirus in King County, Washington State has died. This now makes the first Coronavirus death confirmed in the US.
A woman in her 70s has become the first person with Coronavirus to die in the UK. The number of people infected in the UK has jumped again to 116.
What we found ourselves doing as science journalists every single day was becoming a core part of the newsroom in terms of advising which stories we should be covering, explaining things to people – things like what virology was, what immunology was, how tests are made for different for viruses, what statistics mean. You know, when someone says that a test shows you’ve got this condition or that condition, what does that actually mean in terms of the statistics. Things that we didn’t normally have to explain to people. Partly because these things were all important for public health, but also because people had a lot of time to sort of read and understand detail in science stories that we normally would skip over. And so we were writing stories every single day, twice a day, to just help people to understand this very complex, changing world that was suddenly around them. And it was, it was like, it was like being in the trenches. I mean it sounds like an exaggeration to say that, but every single day, we were writing that. Whilst also, by the way, can I just say, also living the conditions. So we as science journalists also have families and friends and ageing parents, who were also dealing with all of this. It was intense. I honestly can’t remember how we got through it, if I’m honest. And it feels like a long time ago, but it was actually only two and a half years ago.
I think one of the things that struck me was how quickly things were changing, right? And how quickly the science was changing. So at the beginning, we were maybe advised not to wear masks, and then we were advised to wear masks, or that we mightn’t wear the masks properly, etc. What was it like for you covering a topic like mask-wearing when the information and the science was changing?
So mask wearing was one of these things that came up very early in the pandemic. Sort of March, April, people were sort of wondering, you know, should we wear masks to prevent the spread, or, in fact, more likely stop becoming infected from from this emerging virus. And, you know, we didn’t know how the virus really spread properly. We didn’t know much about how infectious it was, there were early studies, but we didn’t really know much. And so mask wearing was seen as one preventative thing. And yeah, it became actually a microcosm for how complex it would be in the following two years, of how science is best communicated. So what do I mean by that? Well, when I’m normally covering a science story, I would cover a scientific paper, or it’s been peer reviewed in some way. Or I’ve spoken to a bunch of scientists leisurely, and giving you some result, right. And I give you all the caveats. And I spent some time doing that. And that’s how science works. It’s a work in progress. But the way we present it in the media often, and the way people understand it is that these are just big facts that come from somewhere. Now, in some sense, that’s true, because I have checked everything. And if I’m a good journalist, I’ll have checked everything. And as far as you’re concerned, it is a fact. With masks, the problem was that we didn’t really know if masks stop the transmission of this virus, especially in the early days. We didn’t really know what kinds of masks worked best because the research just hadn’t been done. And so when you’ve got this situation where there’s an active need to know something, and people around the world are waiting to know “what the science says”, in inverted commas. But when the science doesn’t know itself, what do you do in that case? Well, what you can do is you can give people information as it’s being developed, and as it emerges. So I think that there was some evidence to say that mask wearing – remember, at the beginning of the pandemic, there was some evidence or the best evidence suggested that mask-wearing didn’t really make much difference to whether the virus spread or not. And this was studies from other viruses, flu, etc. And I wrote a story I remember, that basically that you know, people who wore masks didn’t necessarily get less infected with flu and other things, people messed around with their masks or they’re touching them all the time so they’re spreading viruses in other ways. So the best advice is that yes, if you’ve got a mask then wear it but don’t don’t worry too much about it. And in fact, underneath all of that was a social and slightly commercial reason for this, which is that there weren’t many masks around, you know, really good ones. And to be honest, our doctors and nurses and health care workers needed those masks and so if everyone was going out to buy them, especially the really, really good N95 masks which prevent most viruses going through. If everyone was gonna go off and buy those for their home use then what are these doctors gonna have? I remember everywhere in the world there were stories about doctors not having the right equipment, doctors dying, nurses becoming infected, it was awful. So you know the the advice that came from politicians and newspapers and all sorts places was ‘just stay off the masks guys’, you know, just stay away from the masks because we don’t know that work, plus also they’re needed elsewhere. And then as the pandemic went on, we discovered as more research was done by scientists actually looking at the effects of masks, the information began to emerge that actually, if you’re infected with SARS COV 2, the virus behind Coronavirus – the virus bank Coronavirus – if you’re infected with SARS COV 2, you know, then then if you wore a mask, then you’re much less likely to transmit it to someone else. So that’s a really useful thing to do with a mask. However, if you wear a mask and you don’t have Coronavirus, then it doesn’t necessarily stop you really from becoming infected, if you know what I mean. So the the sort of narrative around masks changed, which is that if you think you’re infected, or you’ve been exposed, then you should wear a mask to stop infecting others. So I’m wearing a mask to protect you, and you’re wearing a mask to protect me. I’m not protecting myself by wearing a mask. That’s a bit more complicated, right? But that’s emerging research. And so then obviously, people were confused by it. There were all sorts of bad actors, can I say, that decided that masks were a tool to oppress people. This also happened to vaccines a year later. And so as a science communication person, you kinda have to think to yourself, well, what is the truth? Well, the truth is a bit complicated. The truth is that, there aren’t many masks, we’re not sure if they really protect the people wearing them, but they certainly protect people, other people, if you wear them. There’s some element of control or government intervention that people don’t like. So all these factors that are combined together, there is no truth about whether masks are good or not. You know, the fact is that some people will take this information seriously, some people won’t. So what do you do? What kind of rules do you have? And I think that we saw – what we saw with masks is a really good example of what is true with all science, which is that knowledge emerges over a long period of time. It stumbles into the wrong directions at some point, but eventually it gets to a point where we kind of know what it is. It takes a lot of time. And with masks, in COVID, we just entered – we tried to get information out of that sort of pipeline of normal science operation. We tried to get information at too early a stage, because we needed it. And it was imperfect, and things have to change. And I guess, you know, as a science journalist, you as a scientist Shane, you know, the science often gets things wrong, but it self-corrects eventually. But you know, it self-corrects sometimes at a stage where it’s too late for the information to be useful. So we saw all of this sort of guts of how science is made, and the problems with interpreting all the guts along the way.
We know now that masks work, and we know how they work. COVID-19 is spread through tiny droplets, people with COVID exhale those in their breath, when they cough, sneeze, talk, sing, or just breathe. And masks work by reducing the emission of those droplets from your breath. It’s source control. Masks also help others by reducing the inhalation of droplets. So if you have COVID, masks slow spread, and if you don’t have COVID masks help to lower the risk of you catching it. Masks are just physical barriers, the material that they’re made from is really important. And of course, the where you wear them is also important too.
Things like astronomy, dinosaurs, all that sort of stuff is fascinating to the public and long may it be but really, politically, it’s not that important to anyone. So everyone agrees, and they can be wowed by it. Anything that comes close to the human body, health or freedom in some way. The viral pandemic and lockdowns and stuff, of course, everyone has an opinion, and everyone has a view because it matters to them much more. It matters to their lives. So, the way I approach it is as a journalist is the way I approach any story actually, which is that you need to survey the field of information in front of you, right, and that means taking into account for example, you know, what a scientist says, but also what the person who disagrees with that scientist says, and then you have to, I think you have to just be fair with the weight. You have to weight the information, so that means you have to be fair. And what I mean by that is not being objective. I don’t think it’s possible to be objective, even with science, even if scientists think you can be objective it’s not possible, because everyone has a view and a vested interest of some sort. But to be fair, like so, take climate change, for example, which is another sort of slow motion crisis happening right now. You know, just because one person tells me that they don’t believe CO2 causes warming in the atmosphere. Yeah, sure I’ll listen, but I’m not gonna take it as seriously as 100 scientists who say the opposite, so the fair way to cover that is to not cover the crank, or the person who disagrees and to base the reporting on the 100. So it’s not only my job to transmit information to readers, it’s to transmit the likelihood of that information being correct. But I’m not going to tell you what to think. Also, you know, the way I also often will cover science stories is that I will take a scientific paper or finding and ask lots of people who don’t know each other what they think of the same thing, who are credible in some way, whether that’s because of their institution, or what did they published before. So you know, you do this, of course, in science itself, it’s called peer review, and I kind of do the same thing. I check. I’m constantly questioning myself, checking myself to make sure that I’ve not missed anything. And then there are levels of editing at work as well. Where I work there are fact checkers, and there are editors who will constantly pick holes in your argument, not because they don’t like you, or maybe that’s true. But I mean, the idea is that just can we make this argument as bulletproof as possible, this information because it’s gonna be used by our readers in some way. And so at the end of that process, what I think you can do is you can say, I’m confident that this is a fair picture of what is happening in this particular field of science or anything else. And then, of course, if you get it wrong, the follow up should be to correct it. That’s how you know that you’re someone who cares about the truth. So it’s a process. It doesn’t stop with the publication. Getting something wrong, and correcting it properly, and acknowledging your errors is just as important. I think that’s the only way you can build trust as a journalist.
As Alok explained, advice on masks changed, and that change lead to uncertainty, and for many people confusion. But I want to know, did this uncertainty open the door to people who wants to take advantage of that situation? When it comes to understanding issues of trust in science, philosophers can provide insight. So I spoke to philosopher Heather Douglas, for some US context.
Yeah, so I think it was a really horrible, perfect storm of a couple of different things. One was that the initial expert pronouncements on masks were not just wrong, but on the wrong bases – on bases that were either sort of disingenuous, and were, you know, shown to be on different bases later. And so the public was like, ‘why didn’t you tell me that to begin with?’ Or, you know, just kind of not not grappling fully with the evidence even that was available at the time. Then combine that with, you know, a president like President Trump, who was just ‘I’m not wearing that’. Just, you know, immediately dismissive. And for a lot of his followers, sort of ironic for people who claim to want to be so independent that they really take the lead from – they’re sort of, you know, MAGA sheep. Can I say that? Yeah, okay, follow that.
Archive News Audio 18:05
President Trump hope to watch SpaceX make history in Florida today but instead, he was confronted with the historic and tragic milestone of 100,000 dead Americans on his watch, more than the total number of US deaths in all wars since World War Two, and a far greater death toll than the President predicted just last month. “It looks like we’ll be at about a 60,000 mark”. Even though his own administration recommends Americans wear face coverings to keep the virus from spreading, the president is increasingly mocking those who do calling it politically correct.
That’s right. Well, President Trump, as you said, is on his way to a campaign speech in New Hampshire right now, just a short while ago, moments before his speech was about to begin, event organizers asked people in the crowd to put on a mask and get this, people in the crowd started booing. “Ladies and gentlemen, according to the New Hampshire executive order 63, please wear your masks”. [Booing].
And then, the fact that Americans viewed it as sort of like an impersonal imposition. And instead of saying, like, look, there are all kinds of things we do for public good, that also help protect us. Like we chlorinate drinking water, we treat it and, and we have speed limit signs, and we require driver’s licences, right? That’s a huge imposition. You have to go take a test and you have to drive and you have to like renew it and then take a picture and it’s always crappy. We require this both you, know, for personal protection – you don’t get to drive until you do it competently – and also for public safety. There are all kinds of these public goods. Americans are really bad at talking about public goods. And it seems like there’s always a subset of any given society that’s very suspicious of public goods.
Archive News Audio 20:03
Some resent any action to curtail the disease, even taking issue with those like us for wearing masks. “Why are you angry if I wear a mask?”. “Because you’re wearing a mask out of stupidity, and you’re further pushing the agenda. And the agenda is the deep state, which wants to control all of us and have us living in fear and thinking that you’re contaminated. It is a false narrative. And when you wear a mask, which you can certainly do, you are further pushing the agenda that is condemning all of us and keeps us living in a state of terror”. She’s not alone in those views.
So thinking about the ordinary examples where we do that, and saying like, ‘it’s just like getting a driver’s license’, just wear a mask.
So science advice can be tricky when it affects our freedoms, when it limits where we can go and mandates that we cover our faces when we’re with others. As you can imagine, the person giving that advice matters greatly. You’d want to trust them. And of course, we can all recall the prominent scientists and public health figures that were every day on our TVs, during the pandemic, advising governments and the public.
What makes them trustworthy then? The big question.
Right? So you want your expert to be trustworthy, not just trusted. And what makes someone trustworthy, in my view, is a combination of different attributes. One is that they have expertise. And there are different kinds of expertise, some kinds of expertise, we can just assess on how successful they are doing things, like a really good expert car mechanic fixes the car. And even if they can’t explain why, it doesn’t matter, because the car runs better, right? That’s just fantastic. But the kind of expertise we need in the midst of global pandemics, or the kind of expertise we need to deal with complex issues like climate change or ecological issues, you can’t just say, ‘oh, they had this expertise, it was deployed and it was successful’. You’re dealing with systems where there are a ton of confounders. Even if someone intervenes in a way that turns out in hindsight to be exactly right, you might not be able to pick out the signal from the noise. These are really complicated situations. And so instead of depending on the raw success of the expertise, you instead have to depend upon their ability to make judgments and explain what judgments they’re making in a complex terrain. So when you talk to an expert, you end up finding out about things you didn’t quite realise you need to think about, like how aerosols work, and what sort of like particle size moves, how far in the atmosphere – who knew we had to think about that? But the expert lets you know, and that gives you a sense of confidence that, oh, they’re bringing considerations I didn’t even know I should think about, and they’re explaining what’s going on. So that’s the first thing. The second thing is that the expert has to be tied into a community of other experts, that is continually arguing with them, and making them hone their expertise against different ideas and different views. So that what they’re producing isn’t just the person alone in a tower producing something and then popping out with it, and then we’re supposed to trust it. It needs to be done inside of a community of other people who are going to give the expert a hard time if they think they said or are doing something wrong. And then finally, there needs to be shared values. And they need to have shared values because you want the expert to care about what you care about, so that they asked the questions that you would ask if you had their expertise, and so that they would weigh the evidence the way you would weigh it if you had their expertise. And that’s why signalling that you have certain values is really important for the public to actually trust. So those are the three things that I think are really central for trustworthy expertise: presence of expertise, being in contact with and collaborating with and arguing with a well functioning expert community that hopefully has diverse voices operating within it, and shared values.
Trust in scientific expertise is clearly complex. I wonder how scientists like me can improve on how we communicate what we do and how we do it. If science communication is going to be more than just attracting attention to our papers and our grants, we might have to do things a little differently. How might we operate in a more fluid space where the science on something is changing?
You mentioned, you know, you brought me back to that stage of the pandemic where we were all trying to figure out through listening to experts, how the virus worked. And the advice on mask-wearing in Ireland where I live changed, you know, from the early stages of ‘well we’re not sure if it makes a big difference, you might not wear it correctly, etc.’ And then it settled down, you know, but in that space there was some disagreement and it was a legitimate disagreement. Do you think that in any way led to the like – that led to the situation where masks became contentious? Or was that something completely different?
I think it fed into it. But I think in particular, the reasons for why experts didn’t advocate for the public to wear masks initially, we’re not that concerned with the good of the public. So there are things like ‘we don’t trust you to actually wear it properly’. Well, that’s a great way to undermine your trustworthiness with the public. Or we want to actually keep all the masks for health care workers, which at the time was probably the right decision for like the medical grade masks. Then the sort of desperate situation in so many hospitals in April and May of 2020, when things were really awful, but they should have been really upfront about that, and not said, ‘oh, well, masks aren’t going to be effective for the public’. No, they should have said like, ‘well, it would be effective for the public but unfortunately, we desperately need them in the hospitals, or we’re going to have an entire hospital system collapse’, which we nearly had anyway, but it would have been a lot worse if we didn’t have adequate protective gear. But then, to find out later, because it came out that that was the reason. Well, okay, well, then you’ve dissembled to the public, you haven’t been honest with them. They’re gonna hold that against you. And that’s, that’s I think, part of what went wrong. First of all, that’s totally to be expected with an emergent virus. Right? That expertise is not going to be well thought out, well worked out. Experts were still pursuing and asking the right questions, but the knowledge base wasn’t there. That is typical in cases of emergency. And I think that is why we need to teach science differently in high school and grade school. Because this idea that experts have the answers is not what’s going on when you have an emerging crisis. Experts make well informed, the best informed judgments you could make, they still might not have crucial pieces of information available to them. They’re gonna get them before anyone else, right? And they did for Coronavirus, but they might, they don’t have it in hand. And so that we still need to trust experts, even when the expertise isn’t, you know, as complete as we’d like it to be, as finished as we’d like it to be, is really important and understanding science as a process that is, in some sense, always unfinished, but especially when something new is on the on the table is really important for understanding what the nature of expertise is in these contexts.
Yeah, I think there are lots of things we can learn for complex future science communication. Well, a couple of things that come to the top of my head, we found that people really enjoy data. They enjoyed information dashboards, they were accessing them all the time. I mean, of course, there’s a particular public health need in 2021 and 2022. But actually, you know, people used it, and they use it for all of their, whatever they wanted to use it for. With climate change, there’s not huge amounts of collected data out there. For example, if you want to know how much energy the world uses, accurately, it’s actually very hard to get that information. But it’s really important information, if you want to set public policy in a city or a country or anything like that. The data exists, actually, but it’s just hidden behind paywalls and people won’t let you have it. Whereas with COVID, what we found is that – The Economist, for example, The New York Times, one or two media organisations, built the best dashboards, I would say, of information around COVID, which governments were using in the end, because they couldn’t standardise their own data sources and things. So you know, we had all this information, and it was a public service, I think, to have all that stuff out there. And I think that journalists, communicators can pull these things together and build stories around data in a way that really resonate with people and people can actually use to improve their lives for climate change. Another thing is that COVID really, really showed that if a set of governments wants to do something, they can literally magic money out of the air to do it. Okay. So let’s never have this argument again, that there’s not enough money. I mean, really, the scales of money and correctly, that we’ve released because of the COVID. You should never back down when a government now tells you, ‘oh, we can’t afford to pay for that new nuclear power station or invest in renewables for the next 30 years’. I mean, it just puts a lie to all of that. Yeah, I think that also complexity itself, people are interested in details in a way that I think perhaps newsrooms hadn’t appreciated before. We were, like I said, we wrote lots of stories did lots of podcasts that were really getting into the weeds of bits of science, or bits of economics or other things that you kind of don’t normally get a chance to explain because you don’t have the space. But people really, really responded well to it, they wanted to learn, they wanted to be educated. And I think that, you know, in this world of social media and false information flying around everywhere, I mean, what it shows to me is that perhaps there’s a group of people and, you know, we know we don’t want to just serve those people, we want to serve everyone. But there is a group of people that will spend the time if you give the information to them in a sort of meaningful way that will use that information and they will want detail and more complexity and more transparency. And I think that that’s also a promising thing that I’ve learned from from COVID.
If we are to learn anything from the ways in which we communicated on mask wearing during the pandemic, it might be to treat people, all people as capable of dealing with complexity, to recognize that people are eager to learn about things like COVID that matter greatly to them. That the body of experts giving advice might be more explicit about the processes that are informing their expert positions, and that they might not be afraid to talk about the limits of their knowledge, and we might not be afraid to hear them. When it came to wearing masks during COVID, there were a multitude of expert and non-expert voices speaking loudly. On top of that, scientists were figuring out the science in real time, and the advice kept changing. In complex spaces like this, where the public are continuously figuring out who to believe – proxies like Alok and other quality journalists really show their value to society.
In the next episode, we’re going to explore the HIV/AIDS crisis and the failures of science policymakers. The Trust Race is supported by PERITIA, an EU funded project investigating public trust and expertise. Grant number 870883. This series is produced by Shaun and Maurice, and you can find me on Twitter @shanedbergin.
Produced by Shaun and Maurice
The Trust Race is an output of the Horizon 2020 project PERITIA.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 870883. The information and opinions are those of the authors and do not necessarily reflect the opinion of the European Commission.
Presenter: Dr Shane Bergin
Guests: Sarah Schulman and Dr Will Nutland
Archive News Audio 0:07
We are in the middle of a plague. 40 million infected people is a plague. We are in the worst shape we have ever, ever, ever been in. Nobody knows what to do next. And we have a president who cares more about the unemployed and pits people against each other, just like these people are doing, than he cares about us. And I say to you, in year 10, as we face a figure of 40 million infected people, the same thing I said to you, in 1981, when there were 41 cases. Until we get our acts together, all of us, and fight and make this president listen, we are as good as dead.
This is a series about scandals and controversies that have impacted our trust in science. I’m Shane Bergin. I’m a physicist and a science communicator. In this episode, we explore the history of the AIDS crisis, and how community activism has driven HIV health care. A great deal of what makes scientists trustworthy is the idea that the work they do is for the common good. The benevolent scientists are working in the best interests of everyone. As well as the scientists, there are the people around them – the people in power who control the money that scientists need to do their work. The companies then that take the work scientists do and turn it into products. like medicines. Some of the time they don’t act in the public good. In the 1980s, at the height of the AIDS crisis, governments sat on their hands. They didn’t fund research into cures, they didn’t really provide health care either. Because AIDS was primarily affecting people in the LGBTQ+ community. That meant the community had to fight. They had to fight for access to medicine and to clinical trials. I spoke to author Sarah Schulman whose recent book, Let the Record Show, documents the formation of ACT UP, a coalition of activists who responded with action to the AIDS crisis, and transformed the world for future generations.
In 1979 I became a journalist in the gay and lesbian and feminist media. And so at the time, the corporate media never mentioned gay people or feminism. And there were huge movements going on that had absolutely no coverage. I mean, it, it’s very hard to find out what activist movements actually did. Getting that information is very, very difficult. And so almost every city in the US had at least one feminist paper and at least one gay paper. And there was a group of journalists nationally who did not get paid – we were out there figuring out what the stories were. And I was one of those people. So I started doing this before Reagan was elected actually. And I was on the beat, as we say, when AIDS was announced. So I predated AIDS as a as a journalist.
So Sarah, we might begin if it’s okay, with you telling us a little bit about the overview of the time between the first observation of AIDS in the United States and how that led to the ACT UP movement?
Well, interestingly, the first question is observation by whom. Because we actually have records from the 60s and 70s of homeless people developing vocabulary to describe symptoms that we now know were symptoms of AIDS. So for example, people talked about junky pneumonia, because they observed drug addicts dying of a weird pneumonia. Now, we know that was PCP. Or they had something called the dwindles, which we now know is wasting syndrome. So I would say the underclass observed it to such an extent that they developed vocabulary. And this is 20 years before science observed the pattern. Now, one of the reasons that it took so long is because we don’t have a coherent healthcare system in the United States, right. So only middle class and above have access to health care. So it was only when it came into communities that had good health care, that the pattern started to be observed. And this was 1981. But we now think that AIDS is 100 years old, and we think it came to America in the 40s actually. So when we say that aid started in 1981, we really mean that AIDS was noticed in 1981. And the first public announcement was July 3rd 1981 in the New York Times – 41 cases of rare cancer found among homosexuals in San Francisco.
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Scientists at the National Centers for Disease Control in Atlanta today released the results of a study, which shows that the lifestyle of some male homosexuals has triggered an epidemic of a rare form of cancer.
A mystery disease, known as ‘the gay plague’ has become an epidemic unprecedented in the history of American medicine. Topping the list of likely victims are male homosexuals who have many partners, and drug users who inject themselves with needles. Medical experts say the disease kills four out of every ten people it strikes and that it threatens to explode in the nation’s cities.
Researchers know of 413 people who have contracted the condition in the past year. One third have died and none have been cured.
Today, researchers here at the National Centers for Disease Control said they have found several cases where people who had been sex partners both had the condition. The scientists say this probably means they are dealing with some new deadly sexually transmitted disease.
Researchers are now studying blood and other samples from the victims trying to learn what is causing the disease. So far, they have had no luck.
It’s mysterious, it’s deadly, and it’s baffling medical science. Once thought to affect only promiscuous homosexual males, AIDS is now spreading in epidemic proportions to other segments of the population.
Federal health officials say as many as 1 million Americans may have been infected with the AIDS virus and more than 12,000 are expected to develop the deadly disease next year. That would double the number of cases since 1981 nationwide.
In the first few years, I covered some very early issues. I covered pediatric AIDS, which was very significant in New York at the time. Now no children are born HIV positive in the United States. But then great many were. And so I covered that. I covered women being excluded from experimental drug trials. And I also covered the closing of the bath houses, which is kind of an odd assignment since women were not allowed in the bath houses. But it’s an indicator of how chaotic everything was. Because journalists were dying, editors were dying. Nobody knew what the stories were. The mainstream press ignored AIDS. The New York Times wouldn’t even say the word ‘gay’. In 1981, homosexuality was illegal in the United States. The sodomy laws were not overturned until 2003. Even in New York City, there was no housing protection – you could be kicked out of your apartment. You could be fired from your job. You could be denied public accommodation. Tou could be thrown out of a restaurant or denied a hotel. Familial homophobia was culturally the norm and was virulent, and street violence by the police but also by straight people was very common. It was like a form of public entertainment called gay bashing.
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Police allegedly harassing gays, and police allegedly failing to protect gays when they are assaulted by anti-gay youths have led gays to form this street patrol – Community United Against Violence. The group advises gays to carry a police whistle to call for help from other gays.
I was stabbed on my front doorstep coming home on New Year’s Eve, and another time was beaten as I stepped out of my office. Are you convinced that it is definitely because you are gay? I know it was, they were screaming ‘f**got’ as they beat me.
Complaints about gay discrimination and violence, ‘gay bashing’ is the name for it, have risen dramatically. People report being victims of gunshot wounds, of knivings, assaults with baseball bats usually accompanied with statements as to the sexuality of the victim. What do you mean? You’re queer, you’re a f**got.
So this was a very profoundly oppressed minority. At the time, there was a lot of pseudo science, trying to prove the cause of homosexuality. Now we know that sexuality is different in each person and changes over the course of your lifetime. But in 1980, that was not known. And homosexuality was seen as one thing that had a cause
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For so many years, the model that psychology used to really control us was an illness model. And unfortunately, many people really felt the negative effects of that, because in that model, there was no such thing as being healthy and being a gay or lesbian person. You could have your self shocked out of with aversive approaches to try to make people be straight. In other words, the methods that still were used – you may not be burned at the stake, but there was still very aversive and coercive, and really dangerous ways that people were using to try to convert us from being homosexual to being heterosexual. You could be taken away to a hospital, you could be shown photographs that might be a scene with two gay people being romantic and then literally receive shock treatment to try to make you want to not have that association. Many people were dragged by their parents or went themselves to get changed because the the real, the message was, ‘if you are a gay person, you are sick’.
So when the headline says ’41 cases of rare cancer founded homosexuals’, what they really mean is, the biological disease of homosexuality itself is now manifesting as we all knew it would in this disfiguring terrible disease that will kill you. Well, that’s why the first name for the disease was Gay Related Immune Deficiency. Now, there’s no biomarker for being gay. There’s no such thing as Gay Related Immune Deficiency. There’s no such thing as gay cancer, cancer cannot be gay. But this is because of the biological determinism that was so prevalent at the time. So that was the beginning. And in the first five or six years, 40,000 people died in the United States. And the government did absolutely nothing. And what the pharmaceutical companies basically did was recycle failed cancer drugs that they had patents for. And what they were looking for was one pill that you would take that would make your AIDS go away, because that would be the largest market share for the pharmaceutical company. But AIDS is just an umbrella term like cancer, it’s different in each person, so what they were looking for can’t conceptually exist. So just so people understand AIDS means that your immune system ceases to function. And as it breaks down, it manifests in different ways in different people. But the most common things which were which were called opportunistic infections, were like dementia, blindness, skin cancer called Kaposi sarcoma, the inability to manifest nutrition, so people would literally starve to death. And so what people with AIDS wanted was treatments for these opportunistic infections. But those were smaller market shares than this ‘one pill’ concept. And so pharma was not researching those treatments. What the gay community was doing in those first five to six years, was trying to create some facsimile of social services. Now, because of the role of familial homophobia – which is very historically significant, and has been grossly under considered in looking at these big historical tropes – there was not the kind of network that people who were parts of families had. And many people came to New York as exiles from small towns in America, from other countries, because their families and towns did not want them. So we had a huge population of people who had no network. And therefore the first push is to create some kind of network.
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What have you been able to do for the community? Well, a bunch of us started something called Gay Men’s Health Crisis, which has now grown to a group of about 100 and 150 volunteers. We’ve done everything. We’ve got absolutely no support from any government agency, from any city agency. We’ve done it all ourselves. We’ve raised about $100,000, we’ve given $50,000 of that away to research. We’ve put about 15,000 copies of that newsletter I showed you out to the public. It is the single most thorough piece of information that has been put out by anyone on all of AIDS. It has a complete bibliography. It has symptoms and has a whole complete list of doctors in the New York City area. We’re running support groups for patients, we are training doctors how to deal with people who may have life threatening diseases. We’ve had to do that ourselves. We have support groups for the patients. We have arranged individual therapy for the patients. We are visiting patients in the hospital. We have a hotline which we train volunteers to man. These are calls from people who are saying I’m concerned I got these kinds of symptoms. I don’t know what to do. I don’t have a doctor who’s sympathetic. I don’t have a doctor who knows about AIDS. Somehow I think that the community here is more than nervous. You try not to think about it you just know that your best friend has died. You just know that a person you had a love affair with is in Lenox Hill Hospital with PCP, which has an 80% fatality rate and you have to do that for him and you have to do it for the people who are been who have died or the people who are coming along and you have to do it in the face of a city that is not giving us any help in terms of social, the mayo. We have to get the information around. It’s very hard. I mean, we’re putting out a leaflet – we ourselves – this is something that should be done by who knows, by the government, by the CDC. We are putting out a leaflet that’s going to blanket the whole city – 500,000 copies. We’re doing this. We are all volunteers. We have medical people on our board. But basically we are lay people without any help from anyone else I might say.
A Puerto Rican social worker named Diego Lopez who died of AIDS, started a program at a Gay Men’s Health Crisis called the Buddy Program. And people would volunteer, they’d be assigned to a person with AIDS, and you would like hang out with him or maybe help him do his laundry or something like that, until he died. So there was that. And then there were groups that like would walk your dog, or there was a group called God’s Love We Deliver, which would bring home cooked meals. So that’s really what the first few years were about, because it was so chaotic. But it turned, it had a political turn, primarily because in 1986, the Supreme Court in the Bowers V. Hardwick decision upheld the sodomy law. So in the middle of this mass death experience with all this suffering, the US Supreme Court was like ‘gay sex should remain illegal’. And the rage of people was just incredible. And you see all kinds of angry demonstrations on the streets of New York with no permits, you know, very, very angry. And that I think, really is what created the political environment that allowed ACT UP to be founded on March 10th 1987.
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This beautiful day started with trouble in lower Manhattan. More than 100 people were arrested during a protest. Demonstrators were demanding more money in the war against AIDS. They brought rush hour traffic to a standstill.
Thousands of financial center workers leaving subways and hundreds more in cars with nowhere to go caught the performance. The message was blunt – spend more for research, treatment and education on AIDS. They have been ignoring us all these years. And the only way you get attention from them is to hit them where it hurts. Then just after eight, arrests began. Police have been prepared for waves of protesters and that’s exactly what happened. As fast as they can take one group off the streets, another group sat down and Broadway was blocked for more than an hour.
ACT UP, the AIDS Coalition To Unleash Power, direct action group united in anger over the AIDS crisis. AIDS has made clear that gay people suffer discrimination.
AIDS has led to increased anti gay violence. Last night in Greenwich Village, several motorists tried to run through some gay protesters…
Many people believe gays are sick, get AIDS for Christmas, then die. This is hate mail that’s increasingly being sent to gay organizations.
Homosexual say AIDS victims are being discriminated against, evicted by landlords, and feared by health workers.
And from coast to coast not since the racial unrest of the 60s has one group of Americans suffered such abuse.
AIDS has also become an issue in political campaigns. If we permit laws that encourage more homosexuals to settle here, increasing the threat to your health.
All over the country, homosexuals are reporting increased discrimination. Landlords they say are turning them away. Some dentists won’t treat them. Some ambulance drivers won’t stop to pick them up. Police they say don’t respond to their calls. Newspaper headlines add to the panic.
The ignorance out there is phenomenal and what is spreading this virus, and it is a virus and people don’t even understand that, media stupidity and lies.
violence against gays and lesbians has increased threefold since the AIDS epidemic has begun. And the medical establishment and government has not come forward.
There’s still no one in charge. Ten years an epidemic, millions of people infected, still no one in charge of AIDS.
One of my favorite interviews was with this woman named Karen Timor. So she was a straight woman who saw an article about ACT UP and she thought wow, those people look great, maybe that would be a good place to get some friends. So she came to ACT UP. And one day somebody said, oh, we need somebody to work on insurance. Because you know, in America, we don’t have health care, right? So there’s private insurance and HIV was a pre existing condition. And you couldn’t get private insurance if you were HIV positive. So she said, Oh, that sounds interesting. I’ll try that. Anyway, for the next five years, she masterminded this huge campaign that was carried on by snail mail – okay, there’s no email – in all 50 states. She built coalitions with Gray Panthers, with people with multiple sclerosis, with all kinds of stuff. And she forced insurance companies to remove HIV as a pre existing condition, thereby making insurance available to 600,000 people.
Stories of scientific progress rarely include the accounts of people harmed or neglected along the way. It’s why it’s important and indeed interesting to include community histories in the history of science. That helps us to understand how activism and community action has shaped scientific and healthcare policies.
The pharmaceutical industry turned its back on addressing the issue. Could you tell us a little bit more perhaps, about that, and how ACT UP may have intervened?
Well, it happened in many different ways. So the first I’ve already described, you know, this misconceptualization of how to approach the disease. But with the issue with women with AIDS, there’s even a more complex history, which is that in the 1960s, there was a drug called thalidomide, that was given to pregnant women. And thousands of people had children that were born without limbs. So they sued pharma, and pharma had to pay out huge settlements. After that, they said no more women in experimental trials. So by the time AIDS came around, women could not get into experimental trials. But when there are no treatments, experimental trials are the only treatments. And women with AIDS tended to be poorer, tended to be women of color. And women in general get diagnosed with diseases when they’re more advanced than men. Because women tolerate pain or whatever, or they’re taking care of other people and no one’s taking care of them kind of thing. So women with AIDS were more advanced at point of diagnosis, and yet they couldn’t get treatments. So this was also a huge battle against pharma.
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The same questions as the one before never been asked or told of trials for women or children. I learned of trials in the support group. Seems as though I’m not included. The only medication that’s offered is ACT and Bactrim. I’ve heard about ACT for children and the terrible side effects and not knowing the correct dosage. Why are these the only drugs offered? I’m here to tell you, more trials should be available for me, and the rest of us. We need health care for everyone that housing is right too. We are not invisible.
This is a story about racism. This is a story about sexism. This is a story about greed. And this is war. There are people of colour, women, IVDUs, children, Latinos, Latinas, Asians are all dying for AIDS treatments. And the National Institutes of Health are refusing to do their job. The National Institutes of Health must recognize that what they do is health care. Clinical trials are health care.
The whole process of the FDA drug testing process took years we don’t have years, this drug, the you know, this disease was taking people in months.
Release the drugs. Silence equals death. I have AIDS and I’m here today because I don’t want to die. I know that there are 80 drugs that haven’t been tested yet by the FDA. I want to know why it takes five to ten years in this country to test drugs that you can test…
So ACT UP approached this in many different ways. And one was the Food and Drug Administration did have some experimental drugs that they were looking at. But the regulatory process was so cumbersome, that it took many, many years for the drugs to become available. And people with AIDS were dying very quickly, and they didn’t have years. So a former playwright in ACT UP – this is so interesting, because ACT UP people had no science background, yet they became huge experts on the science, on the science bureaucracy. Anyway, this man, Jim Eigo, studied the FDA and studied the government bureaucracy. And he designed a program called Parallel Track that would allow the FDA to continue the regulatory process while making experimental drugs available to people who needed them on an expanded access basis. And what’s interesting there is that’s one of the successes of ACT UP was that ACT UP became the experts on the issues and ACT UP designed the solutions. You know, and this is a very important lesson for the present. Because the big mistake is to get into an infantilized relationship to power where you’re begging them to solve the problem, because first of all, they’re never going to solve it. And secondly, they don’t know how. And third they don’t want to. So you have to create the reasonable, winnable and doable solution. So Jim sent this to Fauci, you know, Fauci was the guy at the time. I mean, he’s been in power all these years, and he was ignored. So then like three months later, Fauci was giving a talk in public and Jim went and confronted him. And eventually, through a lot of efforts, including a huge demonstration that shutdown the FDA where ACT UP actually went there. They did finally adapt that proposal, although Fauci tweaked it a little and changed the name so that he could claim credit for it, whatever. But if these drugs did become available to people who needed them. Now, the the historical irony is that almost none of these drugs worked – very few of them.
Let’s take a moment to reflect on where we are now with HIV treatments and prevention. When HIV emerged, government inaction meant that people had to fight for their lives to get access to medication. It’s important that we always remember those who died because of the lack of any medical intervention. Activism is what made drug treatments happen. It’s what made the advancements in HIV treatment possible. Activism as a response to prejudice and indifference is at the heart of this story. And it’s still relevant today. We now have treatments that make the levels of the virus in the body so low, that they are undetectable, which means people won’t get sick, and they won’t pass on the virus. We also have a drug that can prevent HIV infection. This drug is called PrEP, which stands for Pre-exposure, HIV Prophylaxis. PrEP is a tablet that someone who does not have HIV takes regularly to prevent them from getting HIV. It works by stopping the virus from getting inside their cells and replicating. So it’s a really important innovation in HIV prevention. But again, activism has been necessary to ensure people have access to it. I spoke to Will Nutland from PrEPster, an initiative that was founded in 2015 by four London based HIV prevention activists. And they did this in response to the lack of clear and concise educational information about PrEP.
We knew that three or four years prior to the formation of PrEPster, that PrEP was approved by the US FDA. And there was a whole wealth of evidence around at the time that supported the use of PrEP for HIV prevention. And we were concerned that there was a lack of information available about PrEP in particularly in key groups of people, for example, gay and bisexual men living in places like London and Brighton, and Birmingham, Manchester, where there were fairly high rates of HIV incidence that we’re seeing really no sign of, of diminishing. And so we wanted to tell people about PrEP, there was a growing body of evidence that supported the use of PrEP, we were coming up against barriers from public health authorities, from NHS England about the availability of PrEP. So, when we formed PrEPster, it had a kind of – our tagline was to educate and to agitate for PrEP access, in England and beyond. So one element of you know, my experience Mark’s experience, as health promoters through almost all of our lives, we took that kind of that education element, started to talk to people about PrEP, and we decided that we really wanted to kind of start rocking the boat so that we could start agitating for PrEP access – given the huge wealth of evidence that there is and was at the time to support access to PrEP. One of the things that we were really at the at the forefront of, of fighting for was when, in 2016, NHS England reneged on their own promises to push for the full rollout of PrEP on the NHS in England, and NHS England or bureaucrats in NHS England, made a U turn in some of those promises around the spring of 2016. We became aware along with some of other community based organization colleagues, that some of those timelines that we’d expected where things like community consultation should start that suddenly that paperwork wasn’t emerging within those timelines. And we became very suspicious about what was happening. And a bunch of us went on to Twitter and started asking questions. And it very soon emerged that actually, one of the reasons that they were – well they were getting cold feet was that some of the legal advice that they were obtaining suggested that because PrEP was seen as preventative medicine, it should be funded through local authorities public health budgets, and not through the NHS. And there was a fear that if the NHS agreed to commission PrEP, then that would open the door for a whole load of other preventative technologies that they felt that they were not responsible – they were not the body responsible to commission. And this really became a great fight for all of community organizations and in the UK to get behind and, and we were part of a coalition called United for PrEP, and United for PrEP took activism on on many fronts right the way from street demonstrations, some of us went and invaded the headquarters of NHS England and were on an old fashioned noisy whistleblowing activists.
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How many more transmissions before you start to listen? What do we want? PrEP! When do we want it? Now!
Our colleagues at National AIDS Trust, also took a different approach, and they took NHS England to court and, and won that case. And then, of course, their legal team stood up and said that they intended to appeal that decision, meaning, we did estimates that probably several thousand HIV infections would result as would be the result of that appeal that we were not able to see PrEP commissioned quickly and rapidly. And instead, there would be more legal processes to delay the rollout of PrEP in England. And that was a very disappointing moment for us as activists, but thankfully, National AIDS Trust went on to win that appeal, and that resulted in the rollout of the impact trial, which was a three year implementation trial that eventually got to see about 25,000 of us in England, obtain PrEP for free on the NHS through that trial. Now, having a trial was a little bit of a fudge. We wanted to see full rollout of a commissioned PrEP service, we understand – or I understand some of the reasoning behind waiting for- using a trial as a way of waiting for the cost of PrEP to go down, making it much more affordable to the health service. But I think one of the things that really took me back to previous decades of being involved in HIV activism was I hadn’t expected the backlash from the media, and from some of the quarters. And I can remember, in the summer of 2016, after NAT National AIDS Trust originally won that court case, jumping into a into a black cab and being whisked through London to go to Broadcasting House and doing a whole afternoon of radio interviews about why this was a really important court case, and why PrEP could be this kind of groundbreaking game changer around HIV prevention. And one of the broadcasters asked me if I thought that the ruling and the decision was around homophobia. And of course the next morning, we woke up to see the headlines in both the Daily Mail and The Times talking about gays winning a court case so that we could take a promiscuity pill at the expense of kids with cystic fibrosis. But that backfired, and why did that backfire? Because instead of NHS England’s press department, who we now know, it had been in part responsible for pushing these narratives. What this meant is instead of pitching PrEP activists against cystic fibrosis activists, is that we came together and I spent quite a lot of the next year working with a bunch of cystic fibrosis activists to work out how the parents of kids with cystic fibrosis could find work arounds, the legal system so that they could start to import generic formulations of a drug, a cystic fibrosis drug from Argentina, at you know, dozens dozens of the times cheaper than the patented formulation that NHS England was saying that they couldn’t afford. So in fact, it brought PrEP activists and cystic fibrosis activists together to stand in solidarity shoulder to shoulder with those parents of kids with cystic fibrosis, being able to learn some activist lessons from us. And my, I think an emotional climax to that was actually sitting in a room in East London with a bunch of those parents, in a room where I felt that maybe I didn’t have really much in common as a queer man without kids sitting in a room with, you know, with parents and grandparents and, and the the representatives of the drug company in Argentina, bringing out some of the boxes of this cheap generic formulation of the cystic fibrosis drug with them. And one of the mothers sitting next to me and holding it in her hands and crying, because she said this will keep my child or my grandchild alive for another year at, you know, 10s of times cheaper than, than they could have afforded. And there were there were the grandparents and parents in that room who had had to remortgage their houses and sell their personal possessions in order to get this life saving drug. And we all sat around the table, and we wept, because these parents and grandparents finally had this drug in their hands that could keep their kids alive. And so for us, it was a double win, we ended up winning the PrEP court case. But also we were able to translate all of this amazing learning over to people from a completely different health condition. And for me, that was a great big middle finger right up at the Daily Mail and The Times. Your hatred did not win, you did not win. It did completely the opposite. It’s it made us stronger. It brought people together.
What is it like Mary to be working on AIDS issues in HIV AIDS issues? What brought you to this? Well, I was diagnosed about almost six years ago, I guess I had a personal interest in it, too. But I think that things that happened to me within that period, I was treated very badly. I had health care workers that would not touch me. I went to the women’s community, they would not help me, right. And finally, my lover and I said, we’re gonna go to ACT UP. And within ACT UP, there were a core set of men who said, look, we’re going to teach you everything we know, and hopefully you’ll survive, and we want you to take it back out into the women’s community. And that’s exactly what I’ve done.
The US government did not take action during the AIDS crisis, because it was primarily impacting the LGBTQ+ community. It was community activism that led to HIV research, to medication, and in turn to healthcare.
The purpose of this information is not for nostalgia, the real purpose is for movements of people today who are trying to make the changes that we all desperately need. And I think there’s a few takeaways that are really important. So just to review, I think, you know, you become the expert on your issue. You develop solutions that are reasonable, winnable and doable. You present them clearly to the powers that be. When they refuse us, you use nonviolent, theatrical civil disobedience or direct action to communicate to the public through the media, that you have a solution that is reasonable, winnable and doable. And this is how you put pressure on institutions. And this whole arc is what is called a campaign so that every action that you do is based on a real demand, that could actually happen. And that each action leads to another action. What you don’t want to do is to waste the energy of your constituency by pulling people into one time only demonstrations that don’t have concrete demands, and you’re not building a campaign. And you need an empowered constituency that is very informed. ACT UP people were very, very informed. We had no official spokespeople, anybody could be a spokesperson. And there were teach-ins all the time, and people really knew what they were talking about. And they were never made to be passive, listening to speakers on a platform or something like that. It was always collective action and direct action.
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I appreciate the use of anger, for instance, Mary, which I see you have in very healthy dose. Don’t you think that’s an aspect of your own mental health? Anger? Yeah. Oh, there’s nothing better than a really good demonstration. Definitely. I think that people who let anger manifest inside them, I think it’s very, very dangerous. People say to me all the time, oh, you’re a pretty angry woman. You’re damn right I’m angry. I have every reason to be angry. And I think if every infected person in this country was angry, I think that a little bit more would be done.
And I look at the fact that I’m HIV positive today, and I wouldn’t be alive today if we didn’t, If I didn’t get arrested 20 years ago. That’s absolutely true. If we didn’t do what we did, 20 years ago, I wouldn’t be here. The medicines that I take to stay alive, I would not have.
The time when most people were planning their careers in their lives, we were burying our friends.
Here in San Francisco ACT UP made history. In June 1990, the sixth International AIDS Conference was underway. Researchers, public policy experts, and journalists from around the world gathered to hear the latest scientific evidence on the deadly rapidly spreading AIDS epidemic. ACT UP crashed the party. Thousands of people showed up for the protests. The days of quietly accepting government policy were over. The protesters turned their grief and anger into action. On the final day, hundreds of protesters stormed the stage. Has the work of ACT UP in San Francisco and elsewhere helped everyone? ACT UP changed the way medicine is practiced. The way research is done. The way drugs are approved. Dr. Laura Esserman is director of the UCSF breast cancer program. She has two trials underway, one for better screening the other to get new treatments more quickly into the hands of women with early stage disease. I think we need to start testing some of these medicines where they matter most. When we can still cure people. She credits groups like ACT UP. It is about urgency.
Many years later, it’s still the case that activism drives research and health care for many in underrepresented communities. And I think it’s fair to ask how does this affect the relationship those communities have with research? How does it impact their trust of scientists?
I’m just wondering, do you feel science has changed? Do you think institutions have learned from ACT UP?
Well, a couple of things have not changed when there is a health cataclysm. It’s poor people and people of color who are most heavily impacted. And these, these fissures reveal the grotesque racial and economic inequalities in our country and globally. And that has not changed. Another thing that has not changed is that once the medication is discovered, the greed of pharma keeps it from being available. So here we’re watching the development of vaccines and entire countries who can’t get them because of the greed of pharma. And then this has not changed. And this is what happened with AIDS drugs. And here we are, again. One of the things that I think the current pandemic has revealed that AIDS also revealed is that having national healthcare systems is not adequate. We need a global health care system where every person in the world has access to the standard of care. And it’s not just because of my politics that I say that – it’s practical, because borders have no relationship to pandemics. And that I think, has become very, very clear.
I know from my own role as a scientist, that a great deal of science communication seems to be about telling people what science has done. Thankfully, that’s starting to change. There’s so much to be gained from working with and learning from different communities with lived experiences. Perhaps if we focus less on what funders of scientists are looking for, and more on how communities are impacted by our research, we’d serve the greater good, and we’d deepen public trust in science. In the next episode, we will be exploring the policing of mental health in ‘It’s Okay To Ask For Help’. The Trust Race is supported by PERITIA, an EU funded project investigating public trust in expertise. Grant number 870883. This series is produced by Shaun and Maurice, and you can find me on Twitter @shanedbergin
Produced by Shaun and Maurice
The Trust Race is an output of the Horizon 2020 project PERITIA.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 870883. The information and opinions are those of the authors and do not necessarily reflect the opinion of the European Commission.
Presenter: Dr Shane Bergin
Guests: Prof Naomi Oreskes and Dr Elisabeth Bik
This is The Trust Race, a series of scandals and controversies that have impacted our trust in science. I’m Shane Bergin, I’m a physicist and a science communicator. In this episode, we look back at the actions of the tobacco industry, and the scientists that they coopted to deny and to create doubt around the harm tobacco causes. It’s been known since the 1950s that tobacco causes cancer and other illness. The public health response to this reality was, however, delayed by bad actors, including scientists who were willing to lie. As a scientist, I’m fortunate to work in a profession that enjoys strong public trust. This trust is dependent on me, and all my peers working ethically and with integrity. What happens then, when scientists abuse that public trust in science? I spoke to Naomi Oreskes is a professor of Earth and Planetary Sciences. She’s the author of numerous books in this issue around science and society, including Merchants of Doubt, a book on how scientists obscured the truth around tobacco. I began by asking her what roles scientists played in aiding tobacco companies.
Well, disinformation really relies upon having people to speak who appear to be credible. So if we cast our minds back to the 1950s, when the scientific evidence that tobacco was deadly, began to really coalesce, there was earlier data, but by the 50s, it was starting to be pretty much unequivocal. The tobacco industry got really scared. They realized that if word got out and if consumers understood, and if governments understood how truly deadly this product was, there would be momentum both for people to stop smoking, but also for governments to control tobacco.
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And so they developed a conscious and deliberate plan working with the PR firm Hill and Knowlton to create disinformation, to create confusion, to manufacture doubt. And the phrase Merchants of Doubt comes directly from the tobacco industry’s own documents in which they sell – there’s a famous famous document in which they say doubt is our product, that they’re consciously trying to create doubt, confusion, uncertainty about the harms of their products so that people will keep on smoking and governments won’t take strong steps to control it. But the tobacco industry understood that if tobacco executives stood up in public and said, ‘Oh, our product is fine’. Many of us wouldn’t believe that because we would know that they had an obvious conflict of interest. But if they could get scientists to say it, that was a whole different matter. And if they could get scientists to say it, they could create the impression of controversy, create the impression of a scientific debate. And what they realized was they only needed a handful. Because if you think about how the media works, the media doesn’t do reviews of peer-reviewed scientific literature. As an academic, I do that. The media find someone to talk about a problem, and then they find someone else to present the other side of that problem. And so the tobacco industry realized that if they could simply recruit even a handful of scientists to be on their side, they could create the impression of a scientific debate. In contrast to the reality which was a scientific consensus, and that was the key strategy that they developed. So in our book, Merchants of Doubt, we identified four key people who played a role in this story. Two of whom worked directly with the tobacco industry, but all four of whom then took the tobacco industry strategies and apply them to other issues. The most salient for us today is climate change.
I’m really curious to know why scientists did this. How do they approach them? And what do they offer them?
It’s much more sophisticated, and therefore more nefarious than some people might think. So it’s not simply a question of finding scientists and say, we’re going to pay you bucket loads of money to do this. It’s a lot more subtle than that. So it begins back in the 1950s. By this the industry, identifying scientists who, for whatever reasons of their own, are reluctant to accept the scientific evidence. And so one of the earliest scientists who worked with the tobacco industry in the United States was a man named Clarence Little, C.C. Little. Little was a eugenicist. He believed strongly in the genetic basis of just about everything, including the genetic basis of chronic diseases like heart disease, lung cancer, emphysema, etc. And so when the evidence began to mount that cigarette smoking caused these diseases, Little was very reluctant to accept that evidence because of his genetic determinism. The tobacco industry realized that this was great, that they could form a partnership to argue for the genetic causes of chronic disease, and Little would work with them, because that is what he actually believed. So that – so a lot of the strategy was to find people who, for reasons of their own, had scientific views that were helpful to the tobacco industry, even if initially, they had nothing or little to do with tobacco. Now, another example, was a fellow that US National Institutes of Health, who worked on radon, and who was a big proponent of the evidence that radon caused cancer, lung cancer. Now, again, he really believed that that was true. And he was right, it is true, radon does cause lung cancer. And he felt that America as a whole was not paying enough attention to the hazards of radon. So when the tobacco industry came along, and said, ‘Oh, we’d like to help you. We think your work is great. We think you’re quite brilliant and wonderful. And we’d like to promote your work on your behalf’. And so he says, ‘Well, sure, of course’, because, in fact, his work is true, and it is correct. And he doesn’t. Either he doesn’t realize or he doesn’t mind. And this is a part I don’t – we don’t really have the evidence to pin down exactly. But we know that the tobacco industry did a lot to promote his work, because if they could convince the American people that a lot of lung cancer was caused by radon, and some lung cancer is in fact caused by radon, then it would distract attention or deflect attention away from tobacco. So that’s sort of strategy one, find people who are doing work that it may or may not be right. I mean, I think, you know, in my opinion, Little was wrong about genetic determinism. The other fellow we’re talking about, I think, was right about radon. But it doesn’t matter to the tobacco industry. They don’t really care whether these people are right or wrong, they just see that they can forge an alliance. So that’s one strategy. Now another strategy is to find lonely and underfunded scientists who feel underappreciated. And in the documents, we found explicit discussion of this strategy. So all scientists need money to do their science, research is expensive. Science is competitive. And often it’s hard to get money for your research, especially if you have an idea that maybe it’s a little unusual, a little quirky, people are a little skeptical. So the tobacco industry had a conscious program to identify people who were in that situation and to cultivate them, to visit them to say, ‘I’d like to come to your lab and learn more about your work’. And they go and they meet these people. And then they say, ‘Well, we think your work is really great., we’d like to fund you’, and they do. And again, much of this research is completely legitimate. In fact, one of the people they funded was Stanley Prusiner, the man who discovered prions and the role of folded proteins in causing disease. This was a very radical idea at the time and he was in fact, a kind of pioneer – it took a while for the scientific community to come around and realize that he was correct about this. So the tobacco industry is in their early on, offering to fund him. And they do. And of all the people that I’ve tried to speak to, in my own life to try to learn more, he’s one of the few people who’s never been willing to talk about the story, because I think it’s in hindsight, a little bit of an embarrassment to him. He went on to become to become a very mainstream scientist. Now, what is the tobacco industry getting in exchange for that? Well, when they need someone to appear in court, they would call on these people. And again, we have direct concrete evidence that when there were court cases, then later on in the 1970s mostly, they would draw on these people they say, ‘We would like you to appear in court’. And again, it’s a very – it’s a subtle and it’s a sophisticated strategy. They don’t ask these people to lie. They don’t ask them to commit perjury. What they ask them to do is to talk about other causes of disease. So I get you on the stand. I’m the lawyer for the tobacco industry, I say, ‘you know, Dr. O’Boyle, tell me about your work. So I understand you work on radon. Is it true that radon causes cancer?’ You say, ‘Yes’. ‘Dr. Prusiner, I understand you work on folded proteins. Is it true that folded proteins cause disease?’. You say ‘Honestly, yes.’ And then I say ‘And is it true that the scientific community has underestimated the role of folded proteins in disease?’. And you say ‘yes’. And they say, ‘so do you think that there could be – that the scientific community could be missing other causes of disease?’ You say ‘yes’. And now what’s happened is you haven’t lied. Everything you have said is true, but you’ve created reasonable doubt. And so a jury then faced with evidence that this particular person is dying from a disease caused by tobacco, well, you know, maybe it’s folded protons, maybe it’s radon, maybe it’s asbestos. And so then there’s two more things I’d like to mention. I mean, there’s a variety of strategies, but these are one of the ones that we think are most important. So a third strategy is creating bonds of gratitude. The tobacco industry gave enormous amounts of money, probably hundreds of millions of dollars to universities, and medical schools all across the United States, and some abroad as well. And in many cases, these had no strings attached. Here’s money to support your research. Here’s money to support your teaching. Here’s money to support your university activities. And one of the places they did that we know is the Rockefeller University, which was one of the leading biomedical research institutes in the entire world. When the time came to get help, they reached out to Frederick Seitz, who had been the president of the Rockefeller University and said, you know, we have a problem we’d like little help with. And again, we know from documents that this work, because Seitz actually wrote a letter in which he said, ‘well, the industry has always been extremely generous towards us, when I was president of the Rockefeller University, so I thought that it would be appropriate to try to return the favor’. So that’s number three. And then there’s a fourth strategy. And these strategies sometimes overlap, they’re not entirely mutually exclusive. The fourth strategy has to do with finding ideological partners. So when the scientific evidence of the harms of tobacco began to be kind of overwhelming, the tobacco industry, switch tactics to argue about freedom. To say, Well, look, we don’t really know whether or not smoking causes cancer. But what we do know is that if the government tells you whether or not you can smoke, you’re going to lose your freedom. And you really want to live in a world where the government tells you whether or not you can smoke cigarettes. And that argument was very appealing to certain people, certain ideological conservatives. Now, Fred Seitz, who I just mentioned, was one of those as well. So in Seitz’s case, we have both an ideological motivation, and also this debt of gratitude. Now, throwing money on top of all that. People always expect the story to be about money. And of course, there is money involved. So Seitz also does get paid. Although I do truly believe that wasn’t his principal motivation, but I’m sure it sweetened the pot. And again, I found one letter where he’s writing to a colleague saying, ‘well, they flew us, they flew me and my wife in the private jet, and everyone was so nice to us, and they were very nice to my wife, and they, you know, treated us well, and they wined us and dined us’, so I’m sure that didn’t hurt.
Were scientists working on the inside of the tobacco industry, or did the tobacco industry just have a very good grasp of how science worked?
So they certainly are aware of how science operates, in part because they do their own scientific research. But also they hire professionals, you know, they hire public relations firms, they hire advertising firms. And if you think about advertising and PR, it’s all about human psychology. So they’re working with people whose job it is to understand how people think, how people make decisions, and what kinds of arguments and messaging are persuasive.
Archive News Audio 14:56
Tobacco ads have been extremely effective over the years. The image of the doctor. And by drafting off of medical authority, the cigarette companies seek to reassure the public that their product wasn’t dangerous, even though it was and they knew it to be so at the time. One of the other devices they used tread on the public’s belief in science. So the cigarette industries understood this authority. So they use pseudoscience. You might see as somebody who’s obviously a scientist to sitting with a cigarette, looking through a microscope, or a scientist with an early Space Program motif behind them, or a scientist with a laboratory behind them. And very often, they quoted scientific studies that were completely invalid. Often they were paid for by the industry to make a specific point rather than to ask a question, and that these were very simplistically put out as scientific findings about the safety of their tobacco product.
So they don’t leave that to chance. Whereas the scientific community in my experience mostly leaves it to chance, right. And most scientists are experts at their field, whether it’s biochemistry or you know, nuclear physics, but are not professionals are not experts on communication or messaging. And so when they try to do that, they often frankly, make a hash of it.
Given the many scientists working across the world, it’s not surprising that some of them have chosen to act dishonestly and to intentionally mislead the public. I was curious to know why some scientists made that choice and what it says about science more generally as a collective enterprise. So I spoke to Dr. Elisabeth Bik, who’s a scientist, and somewhat of a detective when it comes to fraud in science.
I was born and raised and did my PhD in the Netherlands. I’m a microbiologist by training. And in 2001, I moved to the United States, where I worked 15 years at Stanford, working on the microbiome of humans and dolphins. So basically looking at which bacteria we and dolphins carry in our bodies, and how that is associated with health. But I also became interested in science integrity, and specifically first in plagiarism, and looking for plagiarized PhD theses and articles. And then later by accident, I found a duplicated image in one of those PhD theses – a photo that had been used twice to represent two different experiments. And that got me thinking, how often does that happen? So I started looking for papers that had images that were reused to represent something else. And apparently, I have some talents to finding those things. And, yeah, I found hundreds of them. So I scanned 20,000 papers, found 800 of those papers with duplications. And now I’m I quit my job. And I’m sort of a science integrity consultant specifically specializing in duplicate images.
You mentioned the duplicate images there. And I love that story of how you got into it. It’s so scientific, as well, the kind of the investigative approach you’ve used. But beyond the, the search for duplicated images, what other things might come under the umbrella term of scientific integrity.
So there might be many things. So it could be animal or human ethics, for example, not getting direct permission, not obtaining patient’s consent, or very large tumors in in animals that you can see on the photos. It could be bad methods, maybe not including the appropriate control group, or comparing a very different control group to a completely different treatment group – like you, you cannot compare those two if they’re different in other features. It could be table duplications, could be table like standard errors or standard deviations that are way too small or unexpectedly similar. And there could be just data fabrication that you could never detect by looking at a paper. So there’s – and there’s a statistical problems – so there’s all kinds of problems that you could see in a paper. But it’s only the tip of the iceberg because there’s many problems you cannot see. A person can really fake data in a way that you would never know if you are really good, if you’re a bright person which most scientists are. You could generate data you could include data in your paper that looks realistic, but that is completely made up and that is the part that worries me. By looking at papers, you can only catch the tip of the iceberg. There’s probably much more fraud in science than you can ever see, by looking at papers.
You know, as a scientist, it kind of shocks me, but also doesn’t shock me to hear that. What kind of things may motivate scientists to do this in the first place?
There’s a lot of reasons that people fraud in science. And so there’s sort of the general scenario where most scientists feel this pressure to publish. As scientists we’re sort of held accountable for the number of papers that we publish, and it is very hard to publish negative results. So if you do research, and the results are not as nice as you would hope, but you still feel that pressure to publish a paper, you might be tempted then to fake results, to make it look better. And there’s also two specific scenarios that are sort of variants of that, that I’ve come across in by looking at so many papers and hearing some of the stories. So one of the scenarios is that of a person who early in their career, had been very successful, maybe got a Nature paper or an interview or podcast or like, you know, like tasted success, but then they switched to a slightly different research topic, maybe they become a professor or so. And now the research is not going very well. And I feel that is a very fertile petri dish to to do fraud, because that person might feel they need to live up to the expectations, and they might then start to fake results. And the second scenario is that of a professor who is a bully, a professor who is very demanding of their graduate students, or their postdocs. And especially here in the US, if you are from a non US country, and you work on a visa as a postdoc, which is a very common situation, a lot of people come to the US and want to work at a particular university or with a famous professor. But if that professor is very demanding, and says, I want these results by Friday, and you don’t deliver them, and there’s the risk of being fired. If you are fired, your visa immediately expires, and you basically have to go back to your home country within a week or so. And you can imagine that people then are under a lot of pressure to give the professor the results that the professor wants, to live up – to make the experiment work no matter what. And so the professor themselves might not actually be asking to, for example, Photoshop, but they might put so much pressure on a student that you that they will fake results.
And so I imagined that if you are like an external, non academic actor, and you know, you want to employ or piggyback onto the trustworthiness of the scientific process that finding those scientists who, you know, might like bending the rules a little bit can be quite helpful. Are there examples of that? Like, are there? Is there fraud for hire?
I’m not sure! Well, there’s there’s certainly organized fraud. There are what we call paper mills, which are very active in countries such as Iran, and Russia, and in particular, in China. And those are sort of organized crime organizations that will publish fake papers, if you pay for them. So they basically cater towards authors who need a paper. And they will just sell these papers and put the researchers name on the papers, and the papers are completely made up. Or they might be like very low quality plagiarized versions of other articles. But they’re plagiarized in such a way that you wouldn’t immediately notice it – like all the words are changed a little bit, but that sometimes makes them lose their meaning. And so those paper mills are selling papers to authors who need them. And they’re, they’re active in countries who have very strict rules about publishing. It’s not that people in certain places are more fraudulent or less fraudulent than in other countries. But it’s because national rules differ in terms of publishing. So for example, in China, you need to publish a scientific paper, if you want to become a medical doctor. And medical doctors usually – not all, but most of them are not really interested in research. They’re interested in helping patients, treating patients in clinical work, but they still need to publish that paper. So they are faced with the the impossible requirements and they will just buy a paper and see it as an investment in their career. So there’s there’s definitely organized crime if you’re looking in the right places,
I think of the analogies with organized crime, as you say that in terms of not just going after the person who’s on the ground and gets caught, but maybe more the systematic or cultural deep reasons for that that kind of stuff happens in the first place. So maybe without naming names, could you give us some examples of the most shocking frauds that you’ve you’ve come across in your work?
I think what was most shocking for me is just the sheer number of papers with image duplications. And those paper mills I talked about earlier, those organized crimes where there’s perhaps thousands of papers that are being pumped out into the scientific literature that are completely fake. But there have been some some pretty impactful papers where they have been cited by thousands of other researchers where there’s what I believe is obvious photoshopping. And then again, I report these to the institutions and, and the journals, and no action is taken or just a very mild correction. And recently, there was a case in which there was there’s potential image duplication in a sort of a seminal paper on Alzheimer’s disease supporting the amyloid hypothesis. And I wasn’t the person finding who found the duplications, but I was asked by Science, the journal, to look into these cases and see if I would agree with them. And I did. And so it seemed that that particular paper that had been cited, like I believe, around 2,000 times, and sort of started the amyloid hypothesis, or at least a particular line of research within that field, that paper contained or appeared to contain, duplicated Photoshopped images. And that is a huge, huge thing. Because this paper was never – no other researcher was able to replicate that paper. And, but it started, it led to the start of that field. And so it led to a lot of millions of dollars being poured into that research field and other people trying to replicate that paper and could never succeed. So if that paper indeed turns out to be fake, that would mean that it’s probably millions of dollars of research money lost on trying to pursue that.
You mentioned that you’ve contacted journals, and you’ve been invited to take part in investigations. How do other scientists perceive your work?
I think I’m encouraged to do my work by most scientists, but the scientist whose work I criticize are usually not very happy with that, as you can imagine. And I’m totally understanding of that, because nobody likes their work to be criticized. And if you’re a fraud, and and somebody catches you, yeah, those those people tend to lash out and sort of try to discredit me, that seems to be their, their first line of defense. And so there was this one particular professor in France, who claimed that hydroxychloroquine was going to be a really good treatment method for COVID-19 patients. So this is a microbiologist. So he’s, he’s a very well known person in my field, and had published thousands of papers, actually 3,000 papers, which is just incredible amount of papers. And so I knew him before the COVID-19 pandemic. But during the pandemic, he wrote this one paper, President Trump tweeted about it, and it sort of almost overnight, changed a lot of government’s decisions, public health decisions on how to treat COVID-19. So this paper had a lot of flaws. I thought it was a very small paper, but it had also big problems. For example, some people who died or did very poorly on the medication were left out of the study. Well, of course, then your results look very good. So I wrote a long critical review on it. And I also found a lot of other problems in this, this professors papers, and he obviously wasn’t happy. He posted some nasty videos about me, a lot of fans, and his videos gets on YouTube, they get like millions of views within days. And he’s very influential. And so I was harassed a lot on Twitter. But most importantly, he also filed a complaint against me with the procureur in his city, and had several press releases and YouTube videos about where he said he’s going to sue me. And that was very threatening because I do this work as a single person. I don’t have any organization or institution behind me. So if somebody really sues me, I might still be right but it would cost a lot of money to defend myself and it has never really gone so far to the lawsuit – this over a year ago that he filed that complaint, so I think he was just threatening me. But it definitely is very scary to be in a situation like that
Your constructive criticism, which is so welcome for the discipline of science. How do you feel that impacts on the broader public trust or distrust in science?
I do want to stress that I’m, I’m a very strong believer in science. And I feel that science is the only way for this planet to deal with the big problems we’re facing as a humanity or as a planet. Like with global warming and pandemics, we need science, and we need science to be good. And I hope I’m part of that. I always say when I give a presentation about my work, I’ll say at the end, I don’t want you to walk away from my talk, thinking that all science is flawed, because most science is, you know – science is not really like the answer, it’s a process. So most science papers seem to sometimes contradict each other, because we’re sort of finding our way towards the truth. And I’m just looking at the bad apples, and I’m showing them in my presentations and talk about them. But most science is to be trusted. So I hope that people see that science need to be self correcting. If a person sees a bad paper that needs to be called out. And we need as scientists to talk about it and, and maybe, perhaps, remove that paper from the scientific literature to make science better. That sort of should be the part of the process that science is we need to talk about bad papers, and remove them and only keep the good ones.
Given what you do and give them what you see, what could you – what could you offer as hope for the future? What might we all do better as scientists?
I think for for a general person who’s not a scientist, science might come across as very confusing, because sometimes scientific results seem to be contradicting each other. And this is a normal process. This is a normal part of science, because every study is slightly different. And so the outcomes sometimes are different. And I think that’s that’s the thing, we as scientists need to be a little bit better in explaining that to the general audience. But we also need to be much better in safeguarding and safeguarding published papers. So of course, there have been preprints, which are not peer-reviewed. And once a paper is published once, even if it’s just a preprint – once it’s out there, it’s out there and people will always cite it. And it’s hard to sort of connect that to the stage in which a paper is – like is it peer reviewed or not? That is something we as scientists are not very good in explaining, we think we know the system, and we know that. But for the general audience, it’s sometimes a bit confusing to understand. So we need to be better in stressing if a paper has been peer-reviewed or not. But even if it has been peer-reviewed, it can still contain errors, as we talked about, and we need to be much faster and removing papers, retracting them or correcting them if they contain errors or fraud. But I think most importantly, the scientific publishing field needs to step up and do better quality control before they publish papers. So they basically let the authors write the papers for free and peer-review them for free. But we do pay a lot of money as a scientific community to the publishers. Sometimes thousands of dollars to get these papers published. And it’s not for me completely clear where all that money goes to. Because it doesn’t go to peer review, because we do that for free. And it doesn’t go to the writers because we write the papers for free. And if you tried to explain that to , for example, journalists who would usually not write for free and publish for free, it’s hard to explain how the scientific publishing field works and some of that money that we pay to publish or should go to quality control.
The disinformation used by tobacco companies is such an obvious example of how a powerful industry can co opt science and scientists to mislead the public. Elisabeth Bik’s work shows the stresses scientists are under to publish work or professionally perish. And while that’s no excuse for unethical behavior, I was curious to know how the pressure scientists face and making a name for themselves might make them vulnerable to industries keen to dampen public responses to scientific realities like climate change.
Well, the overlaps are enormous. And this was really why we wrote Merchants of Doubt when we discovered that the same people who are denying climate change today had been previously involved in denying the scientific evidence of acid rain, denying the scientific evidence of the ozone hole, and also denying the scientific evidence of the tobacco, the harms of tobacco when we realized that we realized that this was not misinformation, the pattern was too too big and too consistent for this not to be so something deliberate. And so that was the question was really to understand, well, what was this exactly? Who was behind it? And why were these people doing it? Because the scientists we studied were all very distinguished scientists. They were quite brilliant people. I knew two of them personally, and I had met a third, and the fourth I knew a lot about because he was such a famous person. So it wasn’t remotely plausible, that they were simply confused about the science. This wasn’t a case of public understanding of science, or scientific illiteracy. This was clearly something different. And so the point of the book was to try to figure out what it was. And what we were able to show was that it was a disinformation campaign, that it was mostly motivated by ideology, the ideology of the free market, and this idea that if you let the government control the marketplace, that then you lose your freedoms. But, you know, there’s also a lot of money involved. We focus mostly on the ideology, because we thought that was the more surprising part. We thought the fact that there was money, it wasn’t really exactly a shocker. Yeah. It was funny when the book came out, because I did one interview where a journalist said to me very sternly, well, but I mean, don’t you think money is part of the story, too? And I said, Well, yeah, but I kind of thought that was a little obvious. So it’s both, and it’s the power. It’s the the uniting of money and ideology that makes us so powerful, because the money makes it possible for the message to be really to saturate the airwaves and like today to send it out through social media, so the money makes it possible to have this massive disinformation campaign. But the ideology, camouflages it, makes it seem principled. And for some of the actors that actually is principled. So it makes it seem like it’s not just about money. So it’s not just about the greedy tobacco industry or the greedy fossil fuel industry, but it’s about some kind of bigger, more principled question.
As a scientific community, is there anything that we can do to shine a light on this when it happens?
Well, I think there’s a lot of things the scientific community can do. For one thing, this distinction we’ve just been discussing between misinformation and disinformation is extremely important. So misinformation means mistakes, I remember ‘M for mistakes’. So misinformation is when a person says something that’s untrue but it might be an honest mistake. Disinformation is when it’s deliberate. So that’s my pneumonic ‘M for mistake, D for deliberate’. I found that many scientists are reluctant to talk about disinformation, because it’s uncomfortable. You know, it’s basically saying these people are doing bad things, and they’re doing it deliberately. They might be lying. And so you’re attributing motivation, which is often hard to prove, but in our case, we have proved it. I mean, we have the documents, these people wrote these documents, right. They said in their own words what they were up to. But I think, you know, it’s uncomfortable territory, especially for scientists who don’t want to get involved in anything that seems political, or emotional. It’s kind of emotional to say, wow, these people are lying to me. So it’s much more convenient for scientists to talk about misinformation. But the problem is that the remedies are totally different. If misinformation consists of honest mistakes than the standard tools that we have at our disposal, education, communication, scientific literacy, these sorts of standard tools can work and they can be effective. People who want to know the truth, but are just confused, can be reached with education, with better graphs, with clearer language, with plain speaking. But if it’s disinformation, then it’s a whole different universe. And the standard tools that we have relied on not only don’t work, they can actually make it worse. Because if someone is spouting disinformation, and I come along and say, Oh, no, no, that’s not true, here’s the truth. Now, what the audience hears is, ‘he said, she said’, we don’t know, it’s all confusing. Oh, well, let’s just not do anything until we learn more, which is exactly what they want us to think. So you cannot address disinformation with the standard techniques of education. And that’s very hard for scientists because they don’t know – they don’t know anything else, for the most part with you know, with some exceptions, right? The instincts of scientists is to want to just explain things more, give you more science, give you more data. And that doesn’t work.
As a science communicator, I’m very familiar with the narrative that scientists are lone geniuses who develop ideas and make breakthroughs in splendid isolation. Such a view of scientists though couldn’t be further from the truth. Ours is a collective enterprise, where claims are tested and reviewed by peers before being accepted. This is a strength of science, a thing that makes it really trustworthy. Part of my becoming a scientist was my induction into this way of working. And like many other professions, it’s informal, and it relies on our sense of ethics and integrity. Elisabeth Bik spoke of the pressures that scientists are under to perform in their jobs, or indeed, to get a job in the first place. The majority of the world’s scientists are in precarious employment. There’s a hyper competitive market that is toxic to the collective scientific culture, toxic to the very foundation of our trustworthiness. There will always be bad actors, but we can perhaps mitigate the corrosive effects of their actions on our trustworthiness by investing in institutions that build and maintain community. Things like learned societies, professional organizations, well funded public universities, and places where the public and scientists can interact. Within each of these we can work with and for each other, growing public trust in what we do, and holding one another accountable.
The Trust Race is supported by PERITIA, an EU funded project investigating public trust in expertise. Grant number 870883. This series is produced by Shaun and Maurice, and you can find me on Twitter @shanedbergin.
Produced by Shaun and Maurice
The Trust Race is an output of the Horizon 2020 project PERITIA.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 870883. The information and opinions are those of the authors and do not necessarily reflect the opinion of the European Commission.
Presenter: Dr Shane Bergin
Guests: Achal Prabhala, Prof Maya Goldenberg, Dr Tiffany Green, Dr Jahnavi Phalkey
This is The Trust Race, the series of scandals and controversies that have impacted our trust in science. We began The Trust Race by talking about mask use and COVID-19. We saw how establishing trust in science is complex when the science is changing, and recognize the importance of proxies like journalists for creating trust. In this episode, we returned to COVID, specifically to COVID vaccines will ask why is global access to vaccines aren’t equal? And why are so many people reluctant to take vaccines when offered one. As a scientist, I’m motivated by the idea of science as a common good, that it benefits everyone no matter who you are or where you’re from. It’s a quality of science that makes it trustworthy, I think. The reality therefore, that science is not always done for the common good majority impact the trust placed in it by many. I spoke about this with Achal Prabhala who works on access to medicines and vaccines.
At this time, we’re in July 2022. And there are two ways to think about this – the past and then the future. The pandemic was declared a little over two years ago. When the pandemic was declared in 2020, we didn’t have vaccines. We had a range of treatments that turned out to be not very good at what they did. But we have had vaccines now for at least a year and a half. And in the year and a half that’s passed with vaccines, what happened is a travesty. The vaccines went to people who could buy them rather than people who needed them. And so for all of the vaccines that were produced last year, almost without exception, especially if they were from the West – and so these are vaccines, like the ones from BioNTech and Pfizer, from Moderna, from AstraZeneca, from Johnson and Johnson – they overwhelmingly went to Western countries, they went in very small quantities to non-Western countries.
Archive News Audio 2:18
According to the World Health body, the Coronavirus pandemic will go on for a year longer than it needs to because poorer countries are not getting enough vaccines.
Archive News Audio 2:29
The last two years have demonstrated a simple but brutal truth. If you leave anyone behind, in the end, we leave everyone behind. Vaccination rates in high income countries are shamefully seven times higher than in African countries. And we need vaccine equity now.
Archive News Audio 2:49
Inequality is just you know, it’s a human rights issue. It’s immensely, you know, unfair. And what you’ve seen is that even efforts by COVAX from W.H.O., the reason that they’ve sort of fallen behind is because rich countries are getting ahead in the line and buying up the doses as manufacturers are producing them.
Archive News Audio 3:07
While other African nations have struggled to obtain sufficient vaccine supplies, officials blamed production difficulties and vaccine hoarding by high income countries but logistical problems also mean jabs often don’t reach less populated areas.
Archive News Audio 3:22
Today, the capital is well stocked, but the government doesn’t have a plan to get the vaccines to remote parts of the country.
Archive News Audio 3:33
Begging for vaccines in Caracas with no idea of who was listening. And help is not coming fast. Venezuela rejected offers of AstraZeneca vaccines from COVAX. The United States has excluded Venezuela from its vaccination donations for now, citing a lack of transparency about how the country has handled COVID. The black market though is surging for those with means, paying up to hundreds of dollars for a shot.
Archive News Audio 4:01
Amnesty International activist Diana Gichengo finds it scandalous that the most vulnerable people are being neglected. The few people in the middle class who understood why we needed the vaccine took all measures to jump the queue. And that left us falling very very far behind in terms of focusing on the priority population.
The poorest countries in the world received vaccines for less than 20% of their population to date. While in countries, some countries in the west where vaccine hesitancy is low, they have near universal rates of coverage of not just the initial vaccination but also multiple repeated booster shots. So the past of the pandemic has been extreme vaccine inequity as well as extreme inequity in terms of anything else that we need to deal with the pandemic, starting with masks and tests, to treatments – pills like Paxlovid which are recommended in Europe and the United States, but are largely unavailable anywhere else. The future of inequitable access, and it sounds terrible to say, is something that is not even a prediction but more a fact at the moment is that, partly as a result of the vaccine inequity in the past in the pandemic, we had an astonishing rate of mutation of the original wild strain of the Coronavirus, which means that we had variants that rendered existing vaccines less and less effective as the pandemic progressed. The last variant that came to us is the Omicron variant, which has now mutated into various subvariants, almost all of which are causing panic in one part of the world or another. And our existing vaccines even the very best mRNA vaccines from Pfizer, BioNTech and Moderna work very badly to prevent transmission of this Omicron subvariant. A lot of vaccines protect against hospitalization and death, which is a good thing. However, just having millions of cases again, flaring up is not a good thing. It invariably leads to some degree of hospitalization and death, and certainly a large amount of social and economic panic. And our vaccines are not good enough to control them. And so very soon, in October, we will have next generation updated reformulated COVID vaccines, which will also be on the mRNA platform, which are Pfizer, BioNTech, and Moderna. And the truth of these vaccines is if their past record is anything to go by, 93% of all vaccine supplies from these two companies, the two mRNA vaccine manufacturers went to rich countries. So half the world, which would be classified as non-poor or rich, got 93% of these vaccines, the other half of the world got 7%. That ridiculous situation, unfortunately, is likely to repeat itself, not just with the vaccines that come out now in October, but every further progression on the mRNA technology platform, which is the most radical, easiest to use, and certainly the most brilliant technological development in the pandemic. Brilliant, except for the fact that it’s available to so few.
But I wanted first to step back and explore inequality in public health more broadly. So I spoke with Tiffany Green for a US perspective on this. Tiffany is an assistant professor in the departments of population health sciences, and obstetrics and gynecology at the University of Wisconsin Madison. I wanted to understand from her how COVID and public health systems fraught with inequality interacted.
My work really has focused for the last decade plus on the causes and consequences of racial disparities in health in general and reproductive health in particular. So I’m very interested in going beyond just individual level factors to understand how environments and structures influence health. This took a tiny bit of a turn, when the COVID-19 pandemic came into being. Very early on, I saw that people were really reverting to this, this individual level blame, when it was very clear to me from my own research, that the larger structural factors, including systemic and structural racism, we’re at we’re at blame. And essentially, in the US, in particular, the racialized nature of our occupational structures, class, all of that really came together in a perfect storm, to really disadvantage people of color in general, Black people in particular. And also people from other groups, including LGBT folks, Disabled folks, the list goes on and on. It really has been a pandemic that has just disadvantaged so many already marginalized groups. And now we’re seeing we saw it again, with the vaccines which we could have predicted was going to happen. It is happening with people trying to tell us to get back to normal when these groups that I’m talking about had never had a normal that was really acceptable or adequate. And it is because of structural inequality, including structural racism.
I guess, a kind of continuation of that is ‘fix the inequality and it would fix the issue’. Maybe that’s too simplistic, you know.
I’m not laughing at you. I mean, of course, that is absolutely true. You may have heard about a recent study from some social psychologists that showed that when the white Americans in their sample learned about racial disparities in COVID, they became less supportive of public health mitigations and measures. And to be quite frank, this is not surprising to any Black people, a lot of Black people who are not researchers said yeah, we knew that. That as soon as the conversation turned towards ‘oh, well, there are some racialized differences in how COVID is showing up’, then the support for these these measures started to decline. And this gives us empirical proof as to why.
Maybe you might be able to tell us some examples of what that systemic racism looks like for an issue like COVID-19. How might people see yes or notice it in the world around them?
Oh man, do you have all day? I guess we can, we’ll show we’ll go back to that whole big dinner debacle in DC. On a lot of the conversation, we saw this, the DC power players, brokers, government officials, all getting COVID. But how many of those articles talk about the people that were serving them? How many people talked about the people working in the back – the waiters, the staff – and these folks tend to be disproportionately people of color in the United States. Why is that? We know in the United States that access to education is classed, very much classed in contrast to other places. The quality of schools is often dependent on parents property taxes, so if you are in a place where your parents aren’t paying high property taxes, if you’re in poor areas, more likely than not your schools don’t have the resources. And of course, what is racialized in the United States? Class. So people of color, including Black people are less likely to have the same kinds of educational attainment. And importantly, even when we have the same educational attainment, we still don’t have the same incomes there. You know, it just really shows up in where we live, where we work, where we play, where we get health care, it’s just it’s constant.
Archive News Audio 12:00
Race, and income really determine your access to resources, and that’s no different with COVID. Studies show more than 30% of Black adults don’t have broadband internet, leaving many without information online about where and how to get vaccinated. You don’t have great high speed internet, you don’t have a computer. How can you jump in line to make an appointment?
Archive News Audio 12:22
Black residents are significantly more likely than white residents to live more than a mile from the closest vaccination facility. Researchers also found black people are less likely than whites to live near a pharmacy, clinic, hospital, or health center that can administer COVID-19 vaccines.
Archive News Audio 12:37
Data from the Kaiser Family Foundation suggests that LGBT populations may be disproportionately impacted by COVID-19. Historically, there has been a long distrust of the healthcare system by LGBTQ communities. LGBTQ folks have been vilified and mistreated in many ways by the healthcare system. And so folks are reluctant to engage in having a routine primary care relationship or seeing medical providers or healthcare professionals of any kind. And people are afraid sometimes of going to the emergency department because of ways they’ve been treated before or the fear that they’re going to be mistreated because of their identities and what they look like. And so that’s pretty significant in terms of getting folks to seek care when they’re having COVID-19 symptoms, for example.
Archive News Audio 12:38
COVID vaccination numbers among children are drastically different depending on where the child lives in America. Black and Latino and Native American children about three times as likely to be hospitalised.
Archive News Audio 13:31
Information from 23 states that report COVID vaccinations by race and ethnicity shows a stark difference in the role out
Archive News Audio 13:37
Black Americans are hospitalized for COVID at almost triple the rate and are at least 1.5 times more likely to die from this virus than white Americans.
Another example, showed up in Brown County here in Wisconsin towards the beginning of the pandemic, and there was an outbreak and I remember one of the Wisconsin Supreme Court justices said something like, oh, well, basically those people are getting, you know, COVID as if they were some other sorts of people. Well, they were primarily Hispanic Latinx immigrants. Why? Because Hispanic and Latinx immigrants are more likely to be working in meatpacking plants. And these plants do not have the oversight that they should have when it comes to providing good working conditions. I mean, we could go on and on and on. The reality is people of color in general, Black people in particular – much less likely to be able to stay at home. And if you’re less likely to stay at home, you’re more exposed. If you’re more likely to take public transportation, you’re more exposed. This is not difficult. But I think in the United States we are very willful in our ability to ignore what structural inequality It looks like including racism.
And so when you talk about the unequal nature of the front line, as you said, people who are unable to stay at home, people working in various service industries. If one was being logical about it do you think, well, perhaps people in those communities would be first to sign up for a vaccine. Right? Because they might feel protected by it. But I think it might be fair to say your your work has suggested that there are issues around structural racism affecting vaccine take up – what would you say about that?
Here’s a couple of things that I’m seeing. One is it’s complicated. So there are people that are hardcore, anti-vax, as I’m sure you know, even better than I do. And it’s gonna be really hard to reach them. But I think there are also people in the middle who may not be anti-vax, but they may have questions. Why did this vaccine take so little time to get to market? Well, those of us in the science community know that we now see where there’s a will, there’s a way. Right? And we know that it was based on on prior vaccines, prior work that we had done before on vaccines, but trying to explain that – it has been a failure of science communication, I would argue. We have not done a good job of explaining why these vaccines were able to get to market so quickly. And you combine that with the fact that these historically excluded communities have been historically exploited and exploited in the now, and you can see why there may be some hesitancy to vaccines. The other part is that there is there is an unfortunate conflation, even among so called liberal minded public health people about vaccine hesitancy and vaccine access, and they can look really similar sometimes. First of all, we know that, in the United States at least, people of color are less likely to have access to a primary care physician. Now you shouldn’t have to have one to get a vaccine, but – well you should have one anyway – but that plays a large role. If people don’t have a usual primary physician, a usual site of care, who do they have talking to them about vaccines? Are their community health workers showing up to have conversations about hesitancy? And then going back to structural racism, which is what you asked me about Shane in the first place. We both know, we all know that with the vaccine, especially that second one, at least for me, it hit me hard. I was certainly willing to take one for the team, happy to do so. But guess what I can do as a professor, I don’t have to necessarily show up to class the next day if I’m not teaching. I can take time off. If you’re an essential worker, you’re saying, well, not only do you not have sick leave, but you expect me to go take time off to get the vaccine, and then take more time off that is unpaid to recover from these effects. And we see data that reflects that, that part of the reason that some people were not getting vaccines was because they did not have paid sick leave to recover. And again, who are the people that are more likely not to have paid sick leave in the US or job with benefits? People of color, Black people, and/or Hispanic or Latinx people. Right? So it’s so it’s so pervasive? It’s so unbelievably pervasive in the United States that I think people just take this for granted, without realizing how grossly unequal it is, and that it doesn’t have to be this way.
So in terms of getting there, how do we build a community of trusts to move forward together? How do we relate to one another? How do we communicate with each other in a way that builds trust as opposed to things that are, as you said, intentionally polarizing?
That’s a hard question, and I think it depends on the place and the time and the context. I definitely would not have advice for Ireland, which is a completely different social, political and racial context than the United States. I would say a couple of things. One is that I think it’s very difficult given the way our media is structured for these evidence based ideas to rise to the top so I think it will take organic grassroots efforts to reach communities. We have some beautiful success stories about people who have gone from door to door in their communities, to talk to people, to educate them to listen importantly to their concerns. And that is long, hard, messy work, but It is vital to gain people’s trust. And there have been people and Black women in particular in the United States that have done this work. And it just fills me with so much pride and so much hope. I think for me, the second thing is to not give up hope. Sometimes it feels very, very hard. When I saw that article that I mentioned to you earlier, that essentially talks about a racial empathy gap with COVID, it’s so hard. But I think about it like this. I’m not a professional science communicator, although I feel like I’ve fallen into that role. I think there are people that I am not interested in reaching. I’ll just be frank. That’s other people’s job. I think some people are really good with going with the hardcore, anti-vaxxers, hardcore anti-mitigation folks. That’s not me. But I think if we can speak to the people in the middle, the people that might disagree with us, but are willing to listen, I think that’s who we go for. It doesn’t make as much sense for me to speak to the crowd or speak to the crowd that agrees with me. But there are people who are reasonable, that are people that are really reasonable and willing to listen, I think that’s who we try to find common ground with. Because frankly, there are people – and maybe this is me being cynical – but there are people that have a vested interest in seeing COVID go unchecked. And seeing any efforts towards mitigation, any efforts towards equity squashed, and we can’t reach them, at least I can’t. I’m not interested in doing that. But I think we can speak to folks in the middle. And then the third thing I would say is that I, as a former RWJ Health and Society scholar, that’s Robert Wood Johnson Health and Society scholar, unfortunately, that program is kaput now. But it was this beautiful postdoctoral interdisciplinary fellowship program. And one of the things that taught me is that there is health in all policies. And if anything, we have learned that none of this is siloed. We can’t just focus on public health. You know, although that’s drastically underfunded in the United States, we have to focus on social services, we have to focus on universal job guarantees, because all of those things are related to who’s getting vaccinated, all those things are related to who can protect themselves, right. And so what I would love to see is more people coming together across disciplines, across government agencies in the United States to understand that health is all policies and we cannot solve COVID just going through public health. We have to bring in social support programs, we have to bring in people that have nothing to do with public health in general, to make sure that people can protect themselves, we can protect our communities, protect our babies, and so that everyone can reach their highest potential. I know I said I’m very cynical, but I think I’m an optimist in that way, that I think if people have health care, if they have their basic needs met, then there’s so much we can do. There’s no limit to what we can do. And I think it bothers me that we have structural racism from a justice perspective, of course, but you know, as well, I like to say I’m an 80s, baby. And I used to watch the Jetsons and I saw those flying cars, and I have a flying car yet. I’m bitter about that. And I don’t have a flying car because there are so many people who have so much potential, that haven’t had opportunities because we have structured society that way. It is a policy choice. It’s a policy choice. All of this is a policy choice or a set of historical and contemporary policy choices.
Archive News Audio 24:14
If you accept what Tiffany Green is saying, it wouldn’t be too hard to imagine why some people in our societies may not trust that health care, or the associated science is for them. Why would any of us trust a system that’s unfair to us? I spoke about this with Maya Goldenberg, associate professor of philosophy at the University of Guelph in Canada.
Vaccine hesitancy is a surprisingly complex concept. It brings in a lot of misgivings and lack of trust around healthcare, government. It draws on past experiences with healthcare and government. And it also is, as a technology, it is always broader than the technology itself. That’s a little bit of a vague statement. There’s something about vaccines that elicits these kinds of responses that we don’t see in other healthcare technologies like pharmaceuticals. And so what that means is that vaccines represent a lot of things. On the one hand, it is a preventive measure that, at least historically has been somewhat dangerous. We don’t feel that way about vaccines anymore. They’re actually remarkably safe. They’ve always been tied to government mandates.
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And until COVID, most of the recent vaccine mandates have been targeted at children. And that is expected – that should be expected to elicit a lot of emotional response from parents. Parents, who I see as often well intended, trying to do what’s right for their children. So because of that, to describe why people are vaccine hesitant, the answer is, it’s for a lot of reasons. One, they care about their children. Two, they’re concerned about themselves. Three, they’re concerned about how their government is, is caring for them and their community during times of crisis like COVID. And of course, as if that’s not enough, there’s a lot of misinformation about vaccines, precisely because it is such a hot flash issue. It makes it a good point of fracture for people that are trying to sow discord and trouble in society, and the vaccines end up being a good way to do that.
No doubt given your role, you’ve come across interesting stories of public interactions with vaccines, what have you picked up on as an expert in this area with the COVID vaccines?
I’ve picked up on the extent to which people’s trust in the social framework that supports them. So I’m thinking of government, healthcare, and the sort is a very good predictor of whether they are accepting of vaccines. And I should say that the research already showed this prior to COVID. I think everything that we kind of knew before about vaccine acceptance and vaccine hesitancy has been amplified just because of the scale. So it had been the case prior to COVID, that people trusted vaccines to the extent that they trust the infrastructure that brings the vaccines to them. And this is true during times of calm, like whether you would vaccinate your kids in order to go to school. But it’s also been the case during times of crisis, like during H1N1, during ebola. If people thought the government was doing a good job responding to the crisis, they were more likely to get the vaccine. And that’s not just true in Canada, where I live, it’s been a global phenomena, worked through by there’s a vaccine confidence project that has done global surveying of vaccine confidence. And that is one thing that they find from country to country. If you trust the system, you’re more likely to take the vaccine. If you don’t trust the system. That’s probably a good reason not to take the vaccine because you might think the safety checks weren’t done properly, the regulatory checks are too weak. There are parts of the world where people suspect government of trying to maliciously kill or harm parts of the public.
Archive News Audio 29:57
Another problem is that many Kenyans don’t want to be vaccinated at all. Conspiracy theories about rich countries wanting to halt population growth in Africa through vaccinations are going viral on social media. Fact Checker Alphonse Cheongdo tries to counter online fake news. He’s shocked that even politicians are promoting rumors. One especially controversial video features the Minister of Health in neighboring Tanzania. So she’s addressing on why this is very important to for them to use alternative medicines, why we should not trust Western medicine and stuff like that. That was very, very potentially dangerous, and very, very misleading in the way it was typed, because he’s saying no vaccines in Tanzania, we don’t have COVID, take this and you will be safe from any viral infection.
So you talk about that the importance of the of establishing trust in in the system, and I’m doing air quotes there. But like, maybe you might tell us a little bit about who you might perceive that this system to be? Is it just government actors? Is it more complex than that? Might involve the scientists, the companies that produce the vaccines, etc?
I think it is broader, though government probably plays a very central role. And of course, health care systems do also, people who have had bad experiences in health care are less likely to engage in more health care, including engaging in vaccination. And government, of course. It’s been governments that have been promoting vaccines to the public. And governments are the – they’re in charge of the regulatory process. So I need to put a lot of attention to government, and to health care. But of course, the scientists play a part. The pharmaceutical companies that produce vaccines play a part too. And we’ve had so much attention during COVID, we’ve been many of us have been home, and spending a lot of time online, and we have so much attention to how these vaccines were being developed and processed and regulated. We’re watching scientists and medical professionals on social media giving us their hot takes. So if ever it was just healthcare and government, it doesn’t need to be any more because right now people are, you know, more informed about what epidemiologists at Stanford are saying then than ever before. So it seems that our view has broadened.
And does it help? Like does does that window on the process help to build the trust that’s necessary to improve wider uptake in vaccines?
It seems that it has for some and not for others. So there was this interesting phenomena at at the start of COVID. That trust – this is in many countries – trust in scientific experts actually went up. After years of slow decline, the survey suddenly showed an uptick. I think it was a moment of panic for a lot of members of the public. And they wanted to hear what the scientists had to say. That’s when politicians started putting their chief medical health officers – they’re called different things in different countries – but they’re putting their public health officers in front of the camera and then stepping back and saying, we’re going to follow the science. That had obviously polled well, people wanted to hear what the scientists had to say. And there was a little bit of a honeymoon for trust in science that hasn’t weathered all the way. There’s a number of reasons for that. One is nothing has worked out the way we thought it would it was easy to trust the scientists when we thought we just had to hunker down for a few weeks and flatten the curve, and maybe that would be the end of it. But we’ve seen many – remember that? – many unexpected turns along the way. The publics are getting a full view of what site how science and politics interact. And we don’t always like what we see. So it can breed cynicism, which of course is going to lower the trust, at the same time that it is also breeding familiarity, which is actually good for endearing the public to science. So I think both have happened.
Where might it go, do you think? As in, you know, would the the legacy of this global vaccination effort positively or negatively, or maybe a bit of both, affect public trust in science and particular vaccination science?
I’m still waiting to see where we’re going to land on this. The vaccines were billed as the thing that was going to get us out of this pandemic and that has not materialised. The vaccines were not as good as first promised. And of course, that promise came largely from press releases from Pfizer and Moderna. And that should have never been allowed, we should have had independently vetted information and clear analysis of what to expect right from the beginning. So that was a mistake that governments, and I wouldn’t say the media to sort of stepped back and let the press releases drive the story. Of course, we needed a good news story. But it created expectations that didn’t materialize. The vaccines are very good at keeping people out of hospital, but they did not end the pandemic. Even among those of us who live in high income countries and are now double vaxxed, triple vaxxed, now they’re doing a fourth in the US. And I assume they’ll follow in other high income countries too. And, of course, the global aspect is part of it. We’ve got large swaths of the world that cannot access these vaccines, even though they are literally dying to get access to it. I’m glad you’ll be pursuing this on on the podcast, there’s much to say about that. And, and that kind of global inequality is not helping anyone, it is not projecting a view of science as working in the public interest. Instead, it is demonstrating the limits of corporate science when you know, it’s it’s Pfizer and Maderna that are not giving up their information and getting the world vaccinated, even though there’s lots of compelling reasons to do it, even business reasons to do it. So we’re seeing the way the capitalist model and the need for public health don’t fit. And that’s not good for overall trust in science. If anything, this would have been the COVID by itself would have been a great time for a serious rethink about how science is positioned in society, and what we expect from our, from our scientific creators and our corporations. And it seemed like none of that happened. Instead, the capitalist model held, held strong, and we were relying more on, you know, philanthropic billionaires, then strengthening the public health infrastructure at the global scale, which is clearly what we need to get out of this. So that’s all to say, I’m not feeling good about the future of public trust in science, but it’s not too late. We could still enact some of those changes, but it’s going to take strong political will, that we’re just not seeing right now.
Archive News Audio 37:36
Speaking to you from Ireland, I’ve had the privilege of being COVID vaccinated and boosted several times. I clearly remember the day I had my first vaccine, it was a little over a year after the pandemic began the relief, I remember the relief to have knowing that my parents were safe after they had their jabs. And I figured that given the amount of public money that had been invested in the vaccine that I and many of you received, that they would be globally available to everyone around the world in no time. But as Achal mentioned at the beginning of this episode, that’s not what happened. So I wanted to know how vaccination worked in other countries. I spoke to historian of science, Jahnavi Phalkey, who’s currently leading Science Gallery Bengaluru in India,
the pandemic experience in India, in many ways, laid open or laid bare the fault lines of, you know, what are otherwise social and political problems, you know, so the fault lines along which India is socially, politically, geographically, etc, divided, became stronger, became exacerbated in cases. So migrant labor, as you know, it’s a term I find very, very hard to understand, because you know, it, but nonetheless, people who, who move places for work within India found themselves displaced with not only short notice, but also access to pretty much not even public transport in you know, very, very immediately to be able to make the move and then and, you know, forget even bigger questions like, where would they eat along the way? And where would they stay along the way? And what would they do if they fell ill along the way? And, you know, we had incredibly, incredibly tragic stories unfolding around us through the pandemic. Access to healthcare and no access to health care, that divide becoming exaggerated during a pandemic is something we expect. But what we saw was the interconnections between that and everything else, as we of course always know. But here it was right in front of you, right? There were people you know, who worked for daily wages no longer had work and therefore no longer had food and therefore no longer could stay in places they were living in and therefore were thrown out of their homes, and many such things. And of course, we’ve seen this happen in the United States and also unfortunately, in the United Kingdom, for example, where child poverty, I think rose shockingly high during the pandemic. And so to come back to what I’m saying, you know, so we saw this, we saw the pandemic, in a way, unravel the very tenuous sutures, that ties Indian society and politics together. And I think we saw that happen. And it was very, very tough for many people. What was incredibly sobering during the second wave, which was in April last year, is that then these fault lines no longer sort of, you know, stayed true only sociologically, but actually, the pandemic began to hit even those who had access to health care in ways in which they had not anticipated, right. So I think the story that in many ways, shook people was a former Indian Foreign Services person, an ambassador, a retired ambassador, died in the parking lot of a hospital because he could not get a bed in the hospital. And this is someone with incredibly, you know, high number of privileges, and access to things, you know, simply because of the kind of, you know, profession they’ve learned, and even their family could not help them. I mean, it’s, I do not wish to present this as an isolated incident. But those kinds of incidents brought it home to everyone that that, you know, essentially this is a problem that needs to be resolved across society. And that infection, the infection was not going to know boundaries.
I know where I’m based here in Dublin, the perception of scientists and science has, I think, evolved through COVID. How has that experience been for you? How have you perceived and how do you think people around you have perceived scientists and science during the pandemic?
It is hard to say, I think, for me, and for people around me to say that this has significantly transformed trust in science or trust in truth claims made by scientists, for example. Right. And I think there are many, well, there are a few reasons behind that not becoming possible. And I think, I mean, thinking about a few of them. And you know, the first one, I would go back again, to geopolitics, which is that if vaccines made in your country are not recognized abroad, then you don’t know whether you should trust people who are making vaccines in your country or not. Because you can’t be expected in a situation where you’ve lost a family member, to sit down and tell yourself, you know, there might be other reasons why this vaccine is not recognized. You’re not in a position to take risk on yourself or on your family members and your loved ones. And so in a sense, placing trust in work that is being done in your country, becomes a becomes a much bigger burden, when you’re in India, or Brazil, or China, or parts of Africa, and parts of Latin America. Because you are asked to assess the truth claim made by a scientist, and its assessment made in Europe and America. And who, you know, in a tragic, who even under normal circumstances would have – would have the wherewithal, the energy to actually go through go through the entire sort of, you know, process, accumulating knowledge, accumulating perspectives, discussions, and you know, even more so during a pandemic situation, you know, you’re not simply not going to have the emotional energy to be able to do all of that work. And so I think there is, we, we always I think, and, you know, I mean, you know, as a historian of science, I mean, you know, and I mean, I’ve worked outside India for a considerable number of years. And at that point of time, would well always tell myself that, you know, as a historian, for me, there is no, there is no ‘we’, which I can take as a natural ‘we’, right. And it was a position I could very comfortably occupy when I was not living in India, but when I live in India, I’m not only the historian that I am, and, you know, trying to have the critical perspective that I need to have, but I’m also a citizen, that is acted upon by the various agencies and the political forces, both from within and outside. And so it becomes that much harder to mediate my responses or to think through my responses and work through them. Right. And so that’s how I find myself saying ‘we’ now you know, with awareness of how I say it, but still, you know, I’m able to say that and what I can say is that we find ourselves in such difficult situations pretty much all the time, because you you, you know, you you’re denied in many ways comfort of, you know, yeah, accepting what’s what’s given to you. Because you know, you then ask yourself, Okay, you know, we have less resources in our labs. But of course, we have very good people, because clearly when Indians go abroad, they not only win Nobel prizes, but they also become sort of, you know, entrepreneurs, and who knows what all else. And so clearly, we have the talent pool, like every other country does, you know, that we have the the people who are able to do that kind of work, but then our institutions don’t quite work as efficiently. So how does one assess this? Right? And I think and, and there is, of course, public opinion and public opinion that is, especially in the time of pandemic, divided. And then you get news from elsewhere, and then you get news from it in India, and then you have to compute it. Right. And so I think it’s, it’s tough, actually, it’s tough to so to come back to a short answer to your question, I think it’s very hard for anyone sitting in a country like India to have confidence in their assessment of a claim given the number of ways in which it is contested, both within and outside.
Is science then – you know, science with a capital S, like the the institution of science – is it just perceived differently, you know, by virtue of like, historical influences or socioeconomic contexts? It’s not dawned on me before that science as a as a global enterprise, is perceived differently based on where you are, but because of who does it.
And who is seen to be doing it, who is seen not to be doing it, who’s seen legitimately to be doing it, who is to be trusted, who is not to be trusted? You know, our tools of assessment are not symmetrical. And there’s no doubt about that. I mean, as a historian of science, I can say that with a reasonable degree of confidence. So here’s the thing, right? At the end of the day, science is cultural, it’s a cultural enterprise, right? And that includes the medical sciences. And this is what I say all the time about our work at science gallery Bengaluru, which is that we need to create a cultural conversation around science because we don’t have that. What we have is a professional conversation around science. We talk about grades, we talk about, you know, institutional rankings, we talk about professions we talk about upward social mobility. So even when we study professions or science scientists sociologically, we look at upward social mobility. We look at science as ideology, we do not engage with it culturally,
I find it so interesting that science is an academic pursuit or industry could be perceived so differently depending on where you are in the world. As someone in a country with a plentiful supply of vaccines and treatments, was I less exposed to discussions about inequalities and global distribution of vaccines? For the rest of this episode, I’m returning to my conversation with Achal Prabhala to investigate some of the reasons for such stark inequalities.
So broadly speaking, what I work against are pharmaceutical monopolies. And let’s just go back to that word monopoly. In general, I think people instinctively understand it as something that’s bad, bad for society, bad for the economy, bad for humanity. And so literally at every level that you can get to that word monopoly, it has a negative connotation. And yet, in the pharmaceutical industry, we have legal monopolies. These are actually sanctioned by the state rather than policed by it. The logic behind them is that pharmaceutical manufacturers need these sort of unfettered total control market incentives in order to invest in the research and development and the money behind that that’s required to produce these new vaccines. And it sounds logical and reasonable except for the fact that in the pandemic, as before, a large amount of the money that went into the research and development came from American and European taxpayers. And so in fact, the risk in this process was actually removed because no one could afford to have that risk. Many of these countries who funded companies like BioNTech, which received over $500 million in federal funding from the government of Germany, or American taxpayers who sent several billion dollars purely in just research and development funding to Moderna did so – these companies got this kind of money from their governments because the governments understood clearly that this was not a time to play. This was not a time where they could afford to take the kinds of risks we could in non-COVID times. So if for instance, there is no risk at all, not to mention the fact that the future of humanity is at stake. The logic of these state sanctioned and protected monopolies in the pharmaceutical industry does become a little absurd. But because of these monopolies and their unshakeable hold over the imaginations of governments and lawmakers certainly helped with aggressive lobbying and financial spends on campaign contributions to politicians. It’s very difficult to change that system from within the eye of the storm. And so the system needs a rethink. If we believe in healthcare as a universally essential good, which I think we do, and certainly many societies, not just believe in it, but actually have put pen to paper on it and have delivered it like in the United Kingdom, for instance, or in many parts of Europe, where there is a socialized healthcare system that takes care of you entirely from birth til death. The same, the same courtesy I think, should be extended to the medicines that are such an integral part of delivering that healthcare that the state already promises its people. And that commitment isn’t there. Because even though if you live in Europe, or Canada, or Switzerland or the United Kingdom, and you receive the socialized health care, and you’re not actually directly paying for the expensive cancer medicine, or the expensive COVID vaccine, your state is paying for it with your money, and so you are paying for it. In the United States and other countries where you have to buy these things yourself, it can be more stark in terms of what these things cost, but they do cost. And those monopolies are being paid for by you. And there isn’t any reason for this to be happening. It cuts into not just how accessible these things are in rich countries, but certainly cuts into how available they are in poor countries. And if we rethought this – if we rethought the idea of private corporate monopolies in favor of more public oriented research incentives, like prize funds, for instance, where you still create excellent financial incentives for companies, right. But you create them in a competitive manner, where the fruits of excellent brilliant scientific research is then not confined to the black box of a monopoly. But is not only rewarded, but it’s actually also allowed to be used by anybody who wants to manufacture them.
How does the so-called TRIPS Waiver fit into this story?
In the years leading up to 1996, pharmaceutical companies and technology companies in the United States noticed a funny thing and seized upon a perverse opportunity. What they had been doing through the late 70s and the 80s especially, was increasing monopoly control over this intangible idea that we call intellectual property that’s expressed through patents and copyright and trademarks. But they had increasingly understood in the two decades prior to the 1990s, that there was a lot of money that they could earn from these monopolies in rich countries. And then, when the world trading system was looking at an overhaul in the early 90s, they seized upon the opportunity to export their opportunities and collect rent from everywhere in the world rather than just the richest countries in the world. And they did that by inserting a trade rule, which is sort of obligatory and has to become law in member countries at the then nascent World Trade Organization while it was being created, at a time when very few people other than them understood the value and the consequence of these commitments. And what they put in was a binding commitment for all countries who are members of the WTO, the World Trade Organization, to respect and enforce their monopolies. So IBM and Pfizer, which led the lobbying on this round, essentially put in laws that said, well, prior to this, if you were India or Somalia or Taiwan or whatever else, you could just choose what you wish to do in terms of these intellectual property protections. But now you can’t because should you choose to do whatever you want to do then you will be effectively outside the world trading system. And obviously, that’s not an option for any country because, you know, trade is economy and economy is increasingly your basis for existence and simply not possible to exit the world trading system. But that is the bargain that they signed up for, which they didn’t understand. So they said, Yes, well I guess we can respect these monopolies. And then they very quickly found out towards the end of the 1990s, as HIV and AIDS spread, primarily in Sub Saharan Africa, threatening significant percentages of the population that lived in these countries, that these monopolies were going to kill them, literally kill them. So meaning millions of lives were lost at the turn of the century, as a result of $10,000 a year AIDS treatments, being technically available and on the market. So there is a cure for this deadly condition that you have, which no one can afford. And that situation then led to intense scrutiny on this previously obscure trade rule called TRIPS, which stands for the agreement on trade related aspects of intellectual property. Essentially, it’s a rule that binds all countries working in the world trade system, which is effectively every country in the world, to commit to doing what Pfizer and IBM want you to do. And that’s what we still do today, which is why we’re still doing what Pfizer wants us to do, which is, at this moment, if you’re in India, like me with parents in the late 70s and late 80s, not get the Pfizer vaccine despite about 50 companies – like by my own account and my own research that’s been put out and discussed widely – being able to produce those vaccines, right. So despite the fact that there are 50 companies in this country, nearly 50 companies who could make the mRNA vaccines which you receive, we have none.
There are companies ready to go so that they could just start producing the mRNA vaccines in the morning if this rule were changed?
Absolutely. A couple of months ago, colleague of mine Alain Alsalhani, who is a vaccines expert at Médecins Sans Frontières, and I worked on a substantial piece of research that surveyed pharmaceutical firms across Asia, Africa and Latin America. And what we found was that there were over 100 companies who could start making mRNA vaccines tomorrow, and by tomorrow, I mean, you know, sure three months, four months, right? But very, very, very quickly, if they were given the authorization by companies like BioNTech, Pfizer and Moderna to do so. But they’re not.
Gosh, the impact on people’s lives is profound, it must be incredibly frustrating to have done that research and know that reality. To sit with that must be so frustrating.
You know, it’s frustrating, it’s personally enraging, however, yes, because it’s not just a question of what’s happening now. So when you look at – so but it is important to underscore what’s happening now – the standard of treatment for somebody who is alive in the United States, or Europe or Japan, is that you have had two doses of an mRNA vaccine, you’ve possibly had two or three boosters of an mRNA vaccine by now. And if you still happen to catch whatever horrendously mutated form of Omicron is raging at the moment, you then have the option to be tested and treated, which is to say you have the option of getting Paxlovid, which is, at the moment, the best performing drug in lieu of vaccine protection to take, right, so you have potentially five doses of an mRNA vaccine in you plus a week’s course of Paxlovid. And this is incredible protection. It’s really the best we have in an evolving situation. And then let’s get to my father who’s 89. In India, he has zero doses of an mRNA vaccine and no Paxlovid, right. So this is it’s not, you know, it’s not frustrating. It’s enraging.
How has that affected people’s trust in science and in the scientific system?
This is a more complex question. One of the things that’s happening around mRNA vaccines for instance, which is very much the standard of treatment, that should be globally available, but isn’t is that there are several countries, about 50% of the world that has no access to them is doing very little about talking about them or creating ways to have access to them. In India, the reason this is not happening is because to admit to it would be to admit to political failure. So for the Indian government or any government authorities in India to say that we should have mRNA vaccines actually, and why don’t we, would be an admission of failure to the fact that they have not had any access to it the last one and a half years. It’s not like there is a popular rebellion in the country out to have access to mRNA vaccines. But that’s because the state is colluding with, in a perverse way in this case, the pharmaceutical industry, to not admit to its failure in asking for something that it can’t have and doesn’t have yet, because it sees that as a sign of weakness. So, in many ways, I think states like India have tried to create a sort of nationalist narrative around the things that are available in the country as being the very best things that you could have. That nothing more is necessary, and have been successful in doing so. Then, in other parts of the world, where there are different narratives unfolding, I had a surreal experience, which I have to relate in some detail because it’s complex, but in March of last year, with a colleague of mine called Chee Yoke Ling in Malaysia, I wrote an article in The New York Times around Chinese and Russian vaccines. We focused on two Chinese vaccines, Sinopharm’s Beijing vaccine, and Sinovac-CoronaVac vaccine. These were at the time and still remain the world’s most used vaccines. These are the vaccines that have gone into the largest number of bodies on earth. And they’re a remarkable success story in many ways. The Russian vaccine was a remarkable success in terms of its model. It was an open source vaccine. It’s just that they didn’t fully work out how to produce it, and so it was ultimately a huge failure. But at the time that we wrote this piece in March, there was far more promise attached to it. We wrote the facts of this vaccine in a respectable American newspaper, and were fact checked multiple times over the course of a month before we were published. What it turned into in multiple different Asian and Middle Eastern languages – so from Arabic to Khmer, to a range of other languages – was that we had somehow ranked vaccines around the world in terms of safety. And we had said that the Chinese vaccines were the safest, which is, which we didn’t even touch on. I mean, there was no mention of it whatsoever in the article, but because it was translated into languages and read by people who didn’t understand English well enough to go to the original article and see it, it was believed. I mean, I’ve received personal requests from cabinet ministers in Cambodia, for instance, to talk a little more about my research on why Chinese vaccines are the best, or the safest or something like that. I mean, it was just, you know, the head spun, and still does. What I think it was, it was a delusion, combined with hope and a way to be able to justify the circumstances people found themselves in. So I think that people who are in countries who started off getting Chinese vaccines and then started getting other Western vaccines seemed to need something. I think both the states of these countries as well as people within these countries needed something from Western media to tell them that what they were doing was fine, right. And maybe our article did that to some extent. But what they did was they took that and turned it into something saying that not only are they fine, but they’re doing the best of all, you know, what they’re getting is the best, and so on. So the whole thing was absurd. I mean, I just have to say it was the most unnerving thing that has ever happened to me, because I had absolutely no idea how to react to something like this. No, I mean, let alone even, you know, any fantasy of controlling it.
Is there any action even under the radar to seek access to mRNA technology?
As far as mRNA technology goes, I can assure you that countries that don’t have it, which are half the world, including mine, India, which is a sixth of the world, on its own, really don’t want to deal with this. They just don’t want to deal with it for multiple reasons. And unfortunately, not all of those reasons are the fault of Western imperialism alone. You can have two things be true at the same time. I think that during the course of this pandemic, a lot of what has happened – what I see before me is this narrative of poor good countries and then rich bad countries. And that’s just not true. You know, you can have two things be true at the same time. You can have Western countries, rich countries behaving badly. And at the same time, you can have poor countries behaving lazily and callously as they mostly have, you know, through the course of my lifetime. And that’s something – that is something like what’s happening right now, which is that either for a fear in India’s case, which I can definitively say, of being seen as having inadequately responded to the pandemic, having committed political failure essentially. This idea, there is no discussion of mRNA vaccines because to do that would be in their minds, I think, to open up this Pandora’s box of what they did wrong. In terms of the TRIPS Waiver itself, you know, vaccines are complex. And so the TRIPS Waiver and the TRIPS Agreement and so on deals with the kind of tangible monopoly in the pharmaceutical industry, which are patents, which are these instruments of the law. Vaccines, you know, require that monopoly to be overcome, but also another monopoly, which is the actual technology, the way that you make something, which has to not only be transferred, but you have to also licence others to do it, which is the kind of fly in the ointment there. So the TRIPS Waiver was always going to be a partial solution for vaccines, but a complete solution for something like Paxlovid or a complete solution for something like a diagnostic test. And at the TRIPS Waiver discussions at the WTO, I think as well, a lot of poor countries have played a double game, which is that they’ve done nothing to strengthen some of these laws themselves in the countries that they have sovereign control over, while then engaging in this much more convenient fight where everything can be blamed on the West, right. So again, I’m not letting any Western countries have the hope. But the truth is that all of the things that South Africa and India were asking permission from Europe and the United States to do are things that they could have done themselves by simply being bold and taking decisive action.
Science as an academic pursuit for knowledge and science as a for-profit industry are quite different. I have no problem with companies working to make money, but I do find it challenging when those profits are based on publicly funded research. It strikes me too, that public trust in science can be a victim of the complex relationships between publicly funded and privately funded science.
There are monopolies in the pharmaceutical industry that we can legally overturn. And these are the patent monopolies, which are the most simply identifiable forms of total control. So for instance, if India wanted to have access to Paxlovid like you do today, if we wanted access to that tomorrow, we could do that. We haven’t done it either way, which is a separate matter, but we could do it. So there are legal remedies available for some of these monopolies. But the somewhat sobering truth of this moment is that there are no legal remedies available to sharing vaccine technology to getting companies that have been funded by taxpayers to cooperate and license other companies in India or somewhere else, which is to say that we have created a system that is so foolproof in terms of the way that it protects corporations, that we don’t even have the emergency power to undo it. And I think the the sobering point here is that what this system requires to fix itself for the future is not just a set of tweets or a set of different decisions. But you know, in some cases, when it comes to things like vaccines, which are so essential to our lives, it requires tearing up the system and starting again. There is no other way to do it.
We began this episode talking about science being for the common good, and how that was associated with public trust in science. It seems, however, that the common good is not necessarily that universal. Implications of this for trust and science are obvious, and the implications for our collective capacity to respond to global healthcare emergencies is consequently diminished. We cannot meaningfully address socioscientific issues like pandemics without first acknowledging the impacts of inequality and working to address them. Trust will follow.
The Trust Race is supported by PERITIA, an EU funded project investigating public trust in expertise. Grant number 870883. This series is produced by Shaun and Maurice and you can find me on Twitter @shanedbergin.
Produced by Shaun and Maurice
The Trust Race is an output of the Horizon 2020 project PERITIA.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 870883. The information and opinions are those of the authors and do not necessarily reflect the opinion of the European Commission.
Presenter: Dr Shane Bergin
Guests: Haley Moss, Dr Emma Farrell
Archive News Audio 0:04
It’s 10 o’clock. Good evening. Free Britney! When do we want it? Now! When do we want it? Now! Louder with free Britney signs in hand fans marched outside the Stanley Moss courthouse today. What do we want? Free Britney! They’re hoping Britney Spears and the judge will hear them as lawyers went back to the courtroom in the battle over the control of the singer’s finances and part of her personal life.
Archive News Audio 0:29
A conservatorship means that the court appoints someone to manage an incapacitated person’s affairs, personal and professional affairs. And that’s what Britney has been under this conservatorship for the last 13 years. Her father, Jamie has been her designated conservator. And she’s had enough. And she told the court in some bombshell testimony yesterday, just exactly how controlling he is, as you said, everything from birth control to medication, so heavily medicated she claims that she felt like she was drunk all the time.
Archive News Audio 1:05
How could somebody make millions of dollars performing in Vegas, headlining her own show, you know, appearing on The X Factor and making albums and also qualify for this layer of protection, which is usually meant for people who are incapable of making decisions in their own best interest.
Archive News Audio 1:25
I do come at this from the view that I’ve lost a dear friend to suicide as a result of poor mental health. And frankly, I would have given anything for anybody to have stepped in legally to have taken control of him and his affairs at that time because he really needed it. Nobody did and it was too late. What I don’t understand in Britney’s cases how this could have gone for 13 years. I think if you go back to the beginning, I think she was ambulanced twice to hospital. There were grave concerns, I think about her mental health at the time. But the fact that this this order is still ongoing 13 years on. I mean, it’s it’s it smells to high heavens to me.
Archive News Audio 2:05
You know, say your mother has Alzheimer’s, that’s mostly who this is meant for a medical exam, we think was was done with her while she was in the hospital on under 5150 medical health hold and whatever that said that she was incapable of hiring her own lawyer. So it’s very, you know, it seems like a big conflict of interest there that her father who is applying to be her conservator could choose a doctor to go and analyze her.
Archive News Audio 2:34
Spears’ conservatorship started in 2008 after a mental breakdown. It is an extreme legal arrangement granted for people who can no longer make their own decisions. In the years since the popstar says it was abused. She claimed she was drugged, forced to work, and even prevented from having more children. For 13 years Jamie Spears controlled his daughter’s estate and personal affairs. Britney says he abused his position. Jamie says he only acted in her best interest What do we want? Free Britney! When do we want it? Now! It is official the conservatorship of Britney Spears has been terminated. This is the moment they found out she is finally free.
This is The Trust Race, the series about scandals and controversies that have impacted our trust in science. In this episode, we’re looking at the Free Britney movement and the light shines and how our societies care for people with mental health difficulties. As a scientist, I can tell you with incredible detail and accuracy, about how an electron might behave while orbiting a nucleus. I can make predictions and I can test those with experiments. What I have to say in the matter could be relied upon. You’d probably trust me. As a way of knowing science works very well for situations like these. As well as being able to learn about the behavior of particles, science has revolutionized how medicine is done. Where again, we can learn through experiments about how complex biological systems work, we can even develop treatments for disease. Science as a way of knowing is far less certain when it comes to many other areas, like human behavior or mental health. It’s far harder here to tightly define phenomena and to measure them. And yet, the scientific approach tends to dominate how we conceptualize and often respond to these more human phenomena. It’s not true that science has nothing to add here, but it certainly doesn’t offer the full story. What happens when the science part of these complex issues is the piece that’s most trusted? What happens when the scientific way of looking at a complex phenomena is used as the basis to take someone’s human rights away. I spoke with Haley Moss, an attorney, author, an autistic advocate who’s passionate about neurodiversity and disability rights issues. She’s written about the Britney Spears conservatorship, and why it’s a disability rights issue.
Most people when it comes to Britney Spears are very familiar with her music career, that she was extremely popular in the late 90s and early 2000s. And at one point, she ended up having what appeared to be an episode of a mental breakdown, some form of distress. She shaved her head, she was very aggressive seeming with the paparazzi, and folks were very concerned about her mental health. And when this all was happening, her father Jamie Spears was the one who got control of most of her life. And she was under what is known as a conservatorship. For those who aren’t very familiar with the conservatorship or guardianship, depending on where you live, that’s what it might also be called, it essentially takes away all of your legal rights, or most of them and makes them transfer to another person who is the conservator, the guardian, and in some places, that means you can lose the right to vote. It means that you don’t get to decide when you work, how you work. And in Britney’s case, and even as the details came out throughout 2021, we were figuring out that she wanted to have more children, and she was forced to have reproductive health care to prevent her from having more children, that she was forced to work when she didn’t want to that she was even under certain hours that she could see her then boyfriend. And it seems horrifying when you put all these different details together. And that is also a lot of fans are thinking we aren’t getting the Britney that we want. We want to hear more from her. There’s something that seems very off here. And that kind of led to the fans being the ones who really spurred this interest in guardianship and conservatorship, but a lot of the times, it’s not just Britney and that’s the thing that I really like to bring into focus. It took 13 years for Britney Spears’ is legal ordeal with the guardianship, the conservatorship system to come to an end, which doesn’t leave a lot of hope for the rest of us.
What has to happen for a court to award such a draconian view, you might say what what has to happen here in court?
The judge essentially has to find you incompetent to handle your affairs, that’s pretty much the easiest thing. And a lot of the times, it’s very easy to get that finding, which is what makes it so terrifying. A lot of the times this happens to people with intellectual and developmental disabilities moreso than folks who have psychiatric or mental health conditions. That happens an awful lot to people with things like Down syndrome or autism that a lot of young adults especially end up in this system, and not because they’re incompetent. A lot of them end up here because a lot of families are afraid of what happens when my child becomes an adult. And a lot of times the educators, service providers, financial planners who it may be, says there’s not really a lot of options for them. And the only option that they’re usually referred to is this guardianship or conservatorship situation, that a lot of folks in the legal community and those who are disability rights advocates and activists like myself, that either see guardianship is something that needs to be completely done away with and overhauled or used for its intended purpose. And its intended purpose was a last resort, if no other alternative does the job. And there are plenty of alternatives that can limit but not be restrictive until end all basically with a lengthy court fight. So maybe you don’t know how to handle your benefits and you need someone from Social Security to be appointed to do that. Maybe you are incompetent for a certain amount of time and need someone to be making those major legal and financial decisions on your behalf, but if you regain competence after say, a hospital stay or something you can take over your affairs. There’s lots of different options. And we just immediately seem to default to guardianship, especially when it comes to young people and folks who have disabilities.
So it’s a rights issue.
It really is.
What are the consequences more generally, do you feel of a court being able to suspend people’s rights and this way?
The consequences are that it’s very much something that we just accept. That’s the scary part to me is that you don’t always know who is under guardianship. And even if you are under one, there’s not an awful lot of oversight. So if you really wanted to look at these court hearings and transcripts and things like that, guardianship is often considered very private and a family matter. A lot of the times those transcripts, those court hearings are confidential. You can’t just go search them out. So when we were hearing from Britney about her ordeal, it was a really monumental thing is that, oh, we are understanding what this person has experienced, we actually know what she’s saying, and testifying in court, she has access to the legal system. And not only does she have access, but because Britney Spears is Britney Spears. And we all know pop stars are relatively pretty successful people, that she of course, has the means to be able to have an attorney and there were even hearings about who she would hire, it was kind of a mess. But it really just shows how difficult it can be for most people.
I guess, people like her, they have power, well in a limited way because they have resource, but I guess, you know, your work is pointing to the many other people that are in the situation who are not Britney Spears. So like, what do you think can be learned from the experience in recent years? What how can we respond more generally?
That’s a great question. And what I always tell people is, I know that there was a kind of movement that happened behind Britney Spears, and that was the Free Britney movement, but if this is something that continues to freak you out, that feels draconian, that just feels wrong, stay involved in the cause. And I say that primarily because this does affect plenty of people. The estimates that I had I know aren’t exactly reflective, because we really don’t know who is in a conservatorship or guardianship. But the AARP once stated in their documents that it was about 1.5 million American adults, that’s a lot of people. And we have to think about those folks that we can’t just say this is not okay for Britney Spears, but this is okay for my friend, relative, somebody else who has an intellectual disability, it’s okay for my grandparents with dementia, that it’s okay for some people, but not others. We can’t do that. That when we’re freeing somebody like Britney Spears, and working on the cause, and realizing that this system is inherently flawed, we have to realize it’s flawed for everybody who don’t have the same access, who doesn’t have the same power that doesn’t have the same publicity. States, at least here in the US, they are taking some steps to hopefully reform guardianship just a little bit, that you might be seeing this alternative that I’m a very big fan of known as supported decision making. It’s not restrictive, it basically puts the person with the disability in that decision making driver’s seat essentially, and that they have people that support them around them to help make those decisions. But ultimately, even if someone is giving me trusted advice and guidance and wisdom, I am the one who can make that decision of you know, this is how I’d rather spend my money. Or this is how I like to work or where I’d like to work, or I would like to buy a car, but I am someone who struggles with buying a car for instance. That I can choose which supporters I can bring with me or who can speak on my behalf and advocate with me to finish that purchase. For instance, I always say buying a car because if you’ve ever bought a car, you know, it’s a very drawn out weird process, and it’s there’s negotiation, and financing. And it can be very overwhelming, especially for somebody with a disability. So having someone in your corner might be helpful for instance. I know if I’m buying a car, I’m still going to take my dad. So we use some form of this almost every day or in our major life decisions. If you’ve ever asked friends for advice, if you’ve ever taken somebody with you to buy a car, or to sign a lease with the landlord, you’ve probably done some form of this decision making. But that person is not the one who’s deciding when I talk about guardianship in the car context a lot. I say that if you’re under conservatorship, somebody else is picking the car, the color, the model, the make, and you have to bring it back to the garage with a certain amount of gas in the tank every single time.
Can I go back to something we talked about a little while ago, and how how the court makes these decisions? What expertise do they look to to inform their decision?
That’s a really good question. A lot of the time they look to the petitioner who is often the parents are concerned individual. It’s usually a family member who applies for guardianship. It’s not something that comes from strangers typically. So the family, a family member or caregiver or somebody else can basically file this petition and say that this person can’t care for themselves, they can’t manage their own finances, and the judge takes that into consideration and can grant that person that guardianship essentially. And some courts, just take a disability diagnosis as point blank, that’s good enough. So it’s also how you see a lot of people who don’t belong in that system ending up in that system is – and I see this as an autistic person too – that I see lots of autistic young adults who just because of that autism diagnosis, that somehow they’re unable to do it even if they’re perfectly capable of doing things on their own, or that they want to do things on their own. It’s what makes this system so unjust law is it doesn’t often consider the person’s wants and needs. But I also think when we talk about guardianship, we have to understand where family members are often coming from. A lot of the time, they’re very concerned about their transition age, a young adult child’s future, or what’s going to happen when I’m gone.
At the heart of this controversy is the tension between diagnosis as something used against people, and something that gives access to accommodations and support.
And that’s also why diagnoses are complicated, is it does open a lot of doors, especially for young people. It’s access to services in school, it’s access to pre employment and employment services, if you need accommodations. Sometimes that is the only way you would be considered a qualified individual is having that formal diagnosis of sorts. It just opens a lot of doors to receiving services and access and also protection from discrimination. Because if we don’t know that you have a disability, how can we know you are actually being discriminated against? I know, that seems kind of like an obvious question, but it really helps to illuminate the knowledge there, I guess is oh, okay, this is good. But yes, there are those drawbacks I know, every time I’ve disclosed personally, or professionally, I never know what kind of reaction I’m gonna get. I know, there are folks who would love to help me. And I also know there are people who will treat me differently or assume I’m a little kid or that I’m not capable of the things that I am perfectly capable of. It’s kind of this mental gymnastics, when you are a person with a disability. That you have to think how are people going to treat me? Why are certain rights of mine potentially on the line just by being a disabled person?
Freedom is a basic human right. For any of us to have our freedom curtailed, you’d imagine that the bar is set pretty high, that the people making this decision are experts, and that they’re using measures that are valid, unbiased and reliable. I spoke about this with Emma Farrell, an academic and author who’s written about people’s lived experiences of mental health difficulties.
Well, one of the most fundamental and protected of our human rights is the right to liberty. It’s enshrined in our Constitution and protected with a whole range of legislation. There are a few very, but a few instances in which a person might be deprived of their liberty. And one of these is if they have a mental disorder. So in this instance, a person may have their personal liberty suspended or restricted using a number of methods. So things like involuntary admission and tension, seclusion and restraint, restrictions on their movement and can be very tightly restricted. Compulsory medication is one we often hear about tube feeding and the confiscation of all personal property, at least temporarily. So things like money, your your phone, the stuff that you would use every day, even your clothes. So often people who are detained under the Mental Health Act in having everything removed from them, they’ll just be left with a pair of pajamas. The thing is that, unlike physical illnesses is that there is no test or a scan or objective measure for a mental disorder. Judgments about whether or not somebody has a mental disorder is based on a thing called phenomenological psychopathology, which is really descriptions of behaviors or symptoms that are considered signs of of abnormality. But the thing about this is that we know from things like birth cohort studies, so I’m thinking particularly of the Dunedin study where they follow children born in Dunedin at a certain point in time in the 70s through their lives, is that by the time we reach our mid 40s, the vast majority of us – and in the Dunedin study case it was 86% – will meet the criteria for at least one major mental disorder, if not more. So if you think that that’s technically the majority of us can meet the criteria for mental disorder, it’s a surprise that more of us aren’t concerned about this rationale for depriving people of their liberty. Most of us are really only a personal tragedy or fortnight or sleepless nights or homelessness crisis away from a mental health crisis. So like in 2020, for example, here in Ireland, almost two and half thousand involuntary detentions are issued. That’s more than six people every day whose right to liberty was curtailed or suspended under the Mental Health Act.
So who makes the decision to detain people in these types of situations?
Well, the justification for detention is that it’s considered to be in the person’s best interests and this kind of judgment about whether or not it is in the person’s interest is ideally made by a consultant psychiatrist who’s a medically trained doctor with particular expertise in mental disorders. Gardaí, or our police, can also detain people under the Mental Health Act. And basically anyone – members of the public, your partners, your friends can make applications for detention under the Mental Health Act. But mostly it’s police and doctors primarily, though it should really be doctors. I the Mental Health Act here in Ireland, for example, it’s very explicit that it’s the assessment of consultant psychiatrists, but we know what happens in reality is that it’s often police and people who work in emergency departments and a whole range of other what’s called authorized officers of the health service.
What informs their decisions? what’s the basis for what they’re deciding?
The two most kind of common justifications for detention are that the person is a risk to themselves or to others. And the second one is that they are deemed to lack capacity so that they’re not in a position to make good decisions or judgments for themselves. Both of these are peppered with controversy, as I’m sure you can imagine. If we take the first one, for instance, which is the one that’s probably most commonly used, on the grounds that they’re a risk to themselves or a risk to others. So assessing risk is very difficult. Often it comes down to the judgment of the consultant psychiatrist or whoever is issuing the the involuntary detention. But we know that we are all influenced by our judgments are influenced by things like bias and prejudice, which are often unconscious. And we see patterns coming through in this. So for example, we know that in the UK, if you’re a Black person, you’re five times more likely to be detained under the Mental Health Act than a white person.
It’s not that surprising, perhaps that even expert decisions about human behavior are subjective. There aren’t the scientific certainties here that we might wish there were. In that uncomfortable reality, might we have to ask what lies beneath our societal view of people living with mental health difficulties? What influences do we need to become more aware of and critical of?
And we are bombarded in the media by stories of tragedies of murderers and people who are attributed to having mental illness. But we know that these are disproportionately covered. You know, fear sells, and realistically, people who struggle with their mental health are more likely to be the victims of crime than the perpetrators. In Ireland, we’re particularly well-positioned to know how an isolated tragedy, for example, can actually have enormous consequences for a disproportionate number of people. At one time in Ireland, we had more people per capita in psychiatric institutions than any other country in the world, facilitated by legislation that came off the back of a murder by what was called a deranged vagrant in the newspapers of the director of the Bank of Ireland, way back in 1838. It ultimately led to what’s known as the Dangerous Lunatics Act. The thing about this act was that a person could be admitted, involuntarily, free of charge, for life on the most spurious grounds, and it led to it being abused terribly by family members, or anybody who wanted to get rid of somebody who was difficult, or odd, or strong-willed, or just kind of troublesome. So by the 1950s, one in every 70 Irish adults was in a psychiatric institution.
Archive News Audio 23:21
Well, I’m not a doctor. And in particular, I’m not a psychiatrist. But I spent a long, long number of years living in the West of Ireland, and of what I speak, I have seen. One sees a lot of old bachelors and old maids living alone, they become odd. This may be some way connected with emigration also, because it’s well known that the best emigrate, and then the weakest remain on, and they find themselves got away from life. Actually, I know other reasons for people becoming odd are insane. I saw people who under the impact of powerful missionary speakers, develop certain complexes, and became mad. I saw it happen in two counties in the west of Ireland. I knew of four people to whom that happened. But I think also one could give another reason. A very bad poitín is supposed to have that effect. People tell you that. The poitín is badly made. And if people drink a good deal of it, it has the effect of upsetting the mentally. Nevertheless, I think that immigration and loneliness has a great deal to do with it, and the fact that in many places in the west, there is no social life.
What I think this does highlight is how fear and concern and views about risk and safety are often more paternalistic than scientific, and highly vulnerable to misuse.
Can you tell me like what’s changed then since the 50s, where there was this peak in terms of the number of people that were institutionalized? What’s driven, the change to today, and are things getting better?
It’s been very slow in coming along, and often as so many legislative reforms we see here in Ireland are kind of prompted by the EU or the UN. So first, there was a number of acts in the middle of the last century, but the one that’s currently in place, the Mental Health Act 2001, was really about putting in more checks and balances, so it isn’t so easy to remove an individual’s liberty, that they have opportunities to have their voice heard in the process a little bit more, that the tensions aren’t as long, that there’s people monitoring and checking the liberty or have people who are detained under the Mental Health Act. But we know there’s huge problems with this too, you know. It isn’t a balanced a fully balanced process. So the rights of somebody who’s detained under the Mental Health Act in relation to the power of the profession that has the right to take their liberty away. The UN Convention for the Rights of Persons with Disabilities has really been trying to balance this power imbalance between people who are in positions of authority, whether it’s psychiatrists or the justice system, and people with disabilities – and mental health comes in here too – and Ireland in particular has been very slow, if not absolutely dragging their heels in doing the things that we need to do to make sure that people who are vulnerable who are detained under the Mental Health Act have their rights supported.
power lies at the heart of this controversy. The majority of those whose rights are suspended have little of it, with the exception perhaps of Britney Spears. Her conservatorship is unusual, because she is a celebrity. Her rights being suspended attracted attention. And it’s important to remember that Britney Spears is a real person, and that no one should have to go through things like this, but her case has started a wider conversation about mental health, disability and human rights.
But I do hope that folks do take the work that I’ve done around Britney Spears and have thought about as something they can take forward is keep that energy going, not for the famous people but for everybody else, because there are those 1.5 million plus adults who are under guardianships and conservatorships who aren’t going to get that spotlight, who aren’t going to get that mic, who aren’t able to afford expensive lawyers and possibly even fight this system. And I know it also feels very quick to want to jump to abolish guardianship forever, and that’s always the thing that I don’t say, even though I would love to see some form of abolition, primarily because I don’t think we’re ready for it yet. We need to have good alternatives in place, and not everyone does. And it’s a very slow process to see even states having a supported decision making bill become a law. Even here in Florida, where I live, we are still trying to get supported decision making passed, and it hasn’t been successful. But other states have been successful. It takes time. It seems like a politics thing at times. But I also like to remind people that it no matter what side of the aisle you’re on, this is something that doesn’t really seem to discriminate too much. I’ve seen Democrats get really hyped up about this. I have seen Republicans get very hyped up about this. I have seen governors and politicians from both sides really want to do something about guardianship as a whole. So that’s really exciting to me that disability rights has historically been both bipartisan and non partisan, and it’s only very recently it did become partisan. So I’m hoping that people do take that energy forward, that they get involved with their jurisdiction’s protection and advocacy organizations that are fighting the good fight, and that they also think about what this means for the people in their lives.
So what’s the best route to reform? whose expertise should we follow?
Honestly, one of the best things we could do, and some of the best people to engage on this topic are people who have successfully gotten out of the conservatorship and guardianship system. And a lot of them are fighting this fight to end it because they’ve experienced it, they have successfully been able to fight it, they know what it’s like from the inside. And those are the folks who should really be elevated in leading this, which is why I don’t look at this as my entire I want this to be my professional identity or the one cause that I’m fighting for. I don’t have that lived experience. I have the experience of I know this is something that could have very easily happened to me. But I’m not someone who experienced it. I’m not someone who had to fight it. I’m not someone who had to go to court for this reason. So listen, and lead. That’s the best thing that we could do is really give the mic to people who have been through a guardianship or still fighting it. I also think when we are organizing around disability issues, it has to be accessible. If you’re excluding people, we are doing something wrong. So we want this to be as good genuinely inclusive and accessible, whether it’s the language we use, where we meet, how we meet all sorts of things like that. So I really just hope that people are excited and want to do the thing, because we all deserve the ability to make decisions for ourselves that when we become adults, especially young people, that’s the thing that most of them are excited about that they get to take control of their lives, that they don’t have to be home by a certain hour that they don’t have to listen to their parents or guardians or caregivers on literally everything. And imagine if that was suddenly taken away from you. That’s not something that I think most adults would be very happy with. So that can almost be that driving forces think about how this can easily happen to someone you know, or what it would be like to not have that independence or even not be aware of what gets taken away. I’ve heard stories of folks who will go through it. And the parents and family members don’t even realize that they just signed away their kids right to vote, they thought they’d be helping their kids registered to vote not that they can’t vote at all.
Science as a way of understanding the world around us has been remarkably successful, especially in areas like medicine. And because of that success, we tend to perhaps to see it as the ultimate or indeed the only way of knowing something. But what are the consequences of that? When it comes to complex issues like our mental health, we’ve seen how using science on its own, might limit our capacity to respond. Complex issues, like our mental health need complex responses. They need multidisciplinary approaches that are led by those with lived experiences. We need responses that respect and uphold the rights of the people most affected. The next episode will be the final episode of the season, and we’ll explore another complex issue, climate change. The Trust Race is supported by PERITIA, an EU funded project investigating public trust in expertise. grant number 870883. This series is produced by Shaun and Maurice and you can find me on Twitter @shanedbergin.
Produced by Shaun and Maurice
The Trust Race is an output of the Horizon 2020 project PERITIA.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 870883. The information and opinions are those of the authors and do not necessarily reflect the opinion of the European Commission.
Presenter: Dr Shane Bergin
Guests: Dr Rose Roberts, Prof Hannah Daly, Prof Heather Douglas
Archive News Audio 0:09
Our world is at the crossroads and our planet is in the crosshairs. We are nearing the point of no return of overshooting the internationally agreed limit of 1.5 degrees Celsius of global warming. We are at the dip of a tipping point, but it is not too late.
This is The Trust Race, a series of bad scandals and controversies that have impacted our trust in science. And I’m Shane Bergin. In this episode, we’re going to talk about climate change the ultimate societal challenge one that will perhaps define the 21st century and one that will require an all of humanity response. Establishing trust in expertise is going to be essential if we are to succeed. A whole of society response is going to be needed for us to survive climate change. And yet scientific knowledge great and all that is can often shoulder out other valid ways of knowing. Rose Roberts is a scientist and Woodland Cree from the community of Stanley Mission in Northern Saskatchewan in Canada. And I spoke to her about her life on the trap line, and how climate change is impacting her community.
My name is Rose Roberts, I am woodland Cree from the community of Stanley Mission in northern Saskatchewan. And I come from trapping and harvesting family. We have had our traditional trap line for probably over 200 years. And as families, we would go to a certain area for the winter. And we would harvest the animals. And because we have spent generations in these areas of land, we know what it’s supposed to look like, we know the animals that live there, we know the species of fish that live there, we know the weather patterns. One of the distinctions that the Woodland Cree have from many other indigenous peoples is that we actually have six seasons. And the other two seasons are Freeze Up and Spring Break. Because in the Precambrian shield, there is a lot of water. And that was our – those were our highways, right. So when the rivers and the lakes would start to freeze, we were basically isolated, because we couldn’t go anywhere until the ice was thick enough to travel on. And the same thing in the spring. Once the weather started to warm up and the ice started to become unsafe, we would travel to what we call a spring site. And it would usually be by the mouth of a river because the mouth of the river would open up sooner. So we still wouldn’t be landlocked we’d still have a way in and out and we take a canoe there and we live in tents. So it was more of a spring camp. So we knew the way of the land. We knew the animals and because I am Western trained, actually my undergraduate degrees is in nursing, and my Master’s and PhD is in community health and epidemiology. So I’ve always been looking at the health impact of colonization and the residential schools and all the history that has had a negative impact on indigenous peoples in Saskatchewan and in Canada. When the government of Canada settled a class action lawsuit against the residential school survivors, everybody who had attended got a lump sum payment
Archive News Audio 4:16
For former chief Shane Gottfriedson, it’s a moment to reflect and celebrate. Very humbled and honored that we come to this resolution. A $2.8 billion dollar settlement between the federal government and 325 First Nations. Ten years after he first launched a class action lawsuit seeking reparations for harms done by Canada’s residential school system. The announcement is actually the second settlement in the Gottfriedson case. This one provides reparations for the loss of language and culture, as a result of residential schools.
Archive News Audio 4:51
We have a long way to go to address the poverty in our nations and no amount of money will ever be the right amount, nor will it bring back a childhood lost, but today is about acknowledgement, about being seen and heard.
Archive News Audio 5:04
This settlement is the largest class action settlement in Canadian history. And it is believed to be one of the largest anywhere in the world. The enormity of this settlement is due to one reason and one reason only, and that is the sheer size and scope of the harm that was inflicted on the class members as a result of a cruel and discriminatory First Nations family and child welfare system.
Archive News Audio 5:27
An initial lump sum payment of $200,000 will be made to each of the 325 First Nations. 2.8 billion will be placed in a trust fund that will operate for 20 years. The fund will be governed by a board of nine indigenous directors. No amount of compensation can make up for the traumas that First Nations children, families and communities have experienced. It will support individuals who have experienced extraordinary loss and harm. The work ahead won’t be easy says this indigenous language is expert. At the moment, there is not one university in Canada, in which a First Nations or an indigenous language teacher can gain credentials, and gain the knowledge they need to be able to teach. There needs to be a real organized way of supporting of being able to support the people with the proper kind of resources that are needed to do the work. But for now, she says this is mostly good news for indigenous people. A view shared by Shane Gottfriedson. Now it’s our our time to start turning, you know our way of life around to be, you know, learn our languages and our culture.
Everybody who had attended got a lump sum payment. So one of the things that I did is for my own healing, because I’m a residential school survivor, I’m a third generation. I wanted the money to mean something. So I started asking myself, what can I do with this money so that it has an impact on me. And I started thinking about what I missed out on. So what I had missed out on was going to the trap line, I was actually granted six months education leave from the College of Nursing to go live on the land, because my dean at the time said, you are going there to learn indigenous knowledge. It has just as much validity as someone going to Chapel Hill to learn qualitative research methods. I said, Cool. Okay, I’ll take it. So I brought my mom with me, and actually two nieces. So there was four of us that were there for like 10 weeks. And it was the first time that I had been there for that length of time. And there were so many things that I learned, right. And so many common sense things, you know, smack myself on the forehead, because I should have known this. But what I really realized was that it is so important to connect to the land. And it was so healing for me, it brought me back to what it means to be. And just the lifestyle, because we were walking to check our traps, walking the checkers our snare lines. I think I lost like 30 pounds in 10 weeks, because of the amount of physical activity that’s required just to survive, right. So I started going up there for freeze up and I became a licensed trapper. I joke around that it’s a good thing I have a PhD to fall back on because I’m a lousy trapper. But it provided me the opportunity to take five nieces and nephews with me over a period of probably 10 years when they were anywhere from nine to 18 was the age range. And I would take my mom with me because she would not let me go there without her. There was also a program at Stanley Mission, and my sister was a teacher there. It was a land based program. And part of that program involved getting youth to go live with families that are still on the trap line. So that one year I had two other young women with me. So it was a really good experience for them. And you know, I call them my trapline chicks. Because we we develop friendships and we develop lifelong appreciation and love for each other. So that has been my experience. And of course with mum being up there, she was the traditional knowledge keeper and the stuff that she would teach us. And there was one, one freeze up that my brother Jim Joe came with us. And what I began to notice is that I may have a PhD in western education. But he has the equivalent of a PhD on indigenous knowledge. And that one time that I really, really recognize that is that we were going across the lake, and it’s a fairly wide Lake and very deep. So once the, the wind picks up, you can get, you know, two or three foot swells. And we had to cross the lake. And he was able to traverse across the lake, and I did not get one drop of water in my face. And it was like, Oh, my God, he can read the water, he can read the waves, right? He knows this land. And my brothers want to share the knowledge that they have with whoever’s interested. Because indigenous knowledge is experiential. And it’s built up, right, year after year, generation after generation after generation. And the stories that are carried throughout. My mom would tell me stories, as we would you know, be going here and there like, Oh, your dad killed a moose here. And this is where your dad fell through the ice. And she said, I was so lonely when I saw Jim Joe paddling away in a canoe, because it was so misty and couldn’t see him. He just disappeared in the fog, right? So these kinds of memories, but also at the same time, it’s traditional knowledge that she’s passing along. And beginning to notice how it’s changing. And because I’m a scientist, I guess, or a recorder of things, I would start recording the day that the the lake would freeze. And the day got later and later and later, right. And then what I was, what I’d read about in terms of climate change is that it it tends to produce microclimates. And this is exactly what we were seeing that one year, it froze on November 7. And then the following year, it froze on November 24. So there was no way to try and guess when it would freeze. And then the one year, it froze very quickly overnight, and then it warmed up again, which made the ice unsafe. Because we have to snowmobile out, it’s a very remote trap line. So we we fly in by a bush plane, usually the Thanksgiving long weekend here in Canada, on the last plane that goes out in the net, take them off the water because the water gets too cold. And then we have to wait till the ice is at least three inches thick, thick enough to hold the weight of a snowmobile. And then my brothers will come come and retrieve us. So that one year, even though it froze quickly, it didn’t get cold enough for it to be thick enough. So my mom was very worried, because she knew my brothers would be coming. And I said that they know. Right? My brothers aren’t going to cut across the lake, they’re going to go around the edge, right? And they’re going to stop every once in a while to check the thickness of the ice. And if it’s not going to hold them, they’re going to turn back. But probably in the last, I don’t know. 10 years, I think it’s been getting progressively worse, like the impacts. Last year, we just got dumped with so much snow and there was so much slush, right. There was a friend from Stanley who went to go to his cabin, and he ended up hitting slush. And I went I’m talking about deep slush. This is up to the knee level. And he tried to get his snowmobile out of the slush, and he couldn’t and you know, no matter how far you walk, he was still walking in slush. So he managed to make it to their cabin. And then it got back to Stanley that he hadn’t come back. So they sent out a search party. And they did manage to find him in his cabin. But by then he was so chilled he couldn’t even make a fire. So it was a close call. And there were several several incidences like that last winter, and almost every year, there’s at least one individual that goes through the ice because we just can’t predict anymore. And when you think that it would be safe to travel on the ice, it’s not safe to travel on the ice. So those are the things that we’re starting to see II when it comes to being out on the land and the trap wine, the other thing is that the water level keeps on changing. That used to be, you know, at a fairly stable level, but now it’s fluctuating as much as two feet every year. And it affects the animals. Because if there’s insufficient rain, there isn’t going to be any berries. And then the bears aren’t going to have anything to eat. Right, so they’re going to come closer and closer to humanity. And then if there’s a if the Earth is really, really dry, and there’s the fires burn hotter, and then that, that also kills the animals. Wwhen I was growing up, and I’m 58 Now, I don’t remember a time when we had to be evacuated from our community because of forest fires. And now, it’s like almost a yearly, a yearly event. And it’s disruptive to the individuals because they don’t know if they’re going to come home to their home.
The stories from communities like Rose’s offer stark insight into the effects of climate change. As our world heats up the knowledge and know how of communities will surely be essential to seeing the effects of climate change, and hopefully the effects of our responses to it. As we negotiate the complexity, it’s important, we embrace the full breadth of human knowledge of our scale. And crucially, our ingenuity. Hannah Daly is a professor in sustainable energy University College Cork, and I spoke to her about climate change from her perspective as a researcher in the area.
You know, taking a step back in the issue of climate change and understanding and solving it takes a huge variety of different experts. And nobody is sort of it’s, you know, we don’t have any undergraduate degree in climate change. You know, because typically, we, we address education in disciplines. You know, you’ve got a climatologist or a geographer, you’ve got an engineer, you’ve got political scientists, psychologists, you know, you’ve got a process engineer, you’ve got I don’t know, a planner. And, in fact, all of these disciplines and viewpoints and kind of academic perspectives, are actually necessary to both understand the problem and address and implement solutions. So this is what I really think barriers to addressing climate change is the complexity and the broad skills and range of expertise that are necessary. And energy, the field that I’m most focused on is a component of that, you know, so even within energy, you can simply frame the problem of addressing climate change in terms of a need for technology transition, we need to move from these technologies and fuels like, you know, fossil fuel cars and boilers for our homes, and coal power plants, to different technologies. And that might be the kind of engineers perspective. But you also need to understand why these technologies are not being replaced, you know, so a lot of the kind of solutions to climate change are actually more cost effective, even without thinking about the carbon emissions and the external cost of that. So to understand why maybe about 50% of the emissions savings that we need to take place are already possible with mature technologies that can bring wider societal benefits. So you know, an engineer, just their perspective is simply okay. There’s the technology there, you know, there’s something is happening to prevent that. That’s why we need also the perspective of the political economists and psychologists and marketing experts and business people to understand what are the barriers to actually transforming mindsets to transforming landscapes and knows and institutions and infrastructure that are the barriers to deploying those technologies. And of course, technology alone is not the solution, it also has to be about how we use energy and use it in a much kind of lower carbon way. So you know, that, and the various players that are involved in that are so it’s not just engineers, it has to be and I mentioned a lot of these before, the state institutions, I think are already key players. And it’s, again, not just let’s say, the Sustainable Energy Authority of Ireland and Ireland, which is the kind of the the authority which gives grants and tracks statistics. It is the planning laws – are they appropriate for building offshore wind? For solar panels? It is the the energy and utility regulators. Can we license and get solar farms off the ground quickly enough? Do we have enough plumbers and electricians to retrofit houses? And do they have the right skills? Do they have the right information? And it’s also about, I suppose, the public consciousness about, you know, the urgency of this, and that’s where the media plays a really, really strong role in explaining As with the urgency of climate change, and what the solutions are,
in terms of the impact climate change is having on us and our planet. Where are we at right now?
The IPCC reports, the Intergovernmental Panel on Climate Change, who are, you know, 1000s of scientists who come up with synthesis reports, but what the other sciences are actually saying about the causes and the the impacts and the solutions to climate change. And the sort of the really, really short, succinct answer there is, it’s happening. It’s bad. It’s us, and we can fix it.
Archive News Audio 20:36
The climate time bomb is ticking. The message was grim. With a glimmer of hope, and a call to action. Our world needs climate action on all fronts everything everywhere, all at once. Today’s report by the UN’s Intergovernmental Panel on Climate Change is the culmination of years of research from around the world. Scientists say time is running out to limit human caused global warming to one and a half degrees above pre industrial levels,
Archive News Audio 21:03
We will probably reach one and a half degrees in the first half of the next decade. The real question is whether I will to reduce emissions quickly means we reach one and a half degrees. Maybe go a little bit over but then come back down.
Archive News Audio 21:22
The UN Secretary General Antonio Guterres has hailed a major new report on climate change as a survival guide for humanity. Climate scientists from the Intergovernmental Panel on Climate Change, said that clean energy and technology can be exploited to avoid the growing climate disaster. But they also want a key global temperature goal will probably be missed. They say the world is expected to warm above 1.5 degrees Celsius by the early 2030s. Secretary General Antonio Guterres has been speaking at the launch of the IPCC report, and said everyone needs to work together quickly. To achieve the climate change goals.
Archive News Audio 22:02
The world’s top climate scientists and representatives of countries have spent a week in Switzerland condensing 10,000 pages of academic research from the last seven years into a 20 page warning for world leaders. It’s a summary of all of their major reports featuring the science of climate change current impacts of the climate crisis and potential solutions. Some of the warnings include at least 3.3 billion people will be affected by global warming 14% of species will face extinction if the earth’s temperature rises by 1.5 degrees. And by 2050, cities will be experiencing annual disasters that would have previously occurred every 100 years.
Archive News Audio 22:41
Leaders of developed countries must commit to reaching net zero, as close as possible to 2040. The limit they should all aim to respect this can be done.
Archive News Audio 22:53
Today’s report outlines what it calls a survival guide for humanity. This report clearly emphasize that we do have technology and know how and tools to solve for the climate problems. Some of those tools are already being used. We’ve seen a revolution of batteries, both small for vehicles and large restoring power from solar and solar and wind. You know, we there’s been a huge burst of innovation across all sectors. The UN chief wants developed nations to accelerate that innovation, calling on leaders to commit to net zero greenhouse gas emissions as close to 2040 as possible.
Archive News Audio 23:32
We are at the dip of a tipping point. But it is not too late. I count on the IPCC to do what you have always done, point the way to solutions. And so the urgent need to end global heating with cold hard facts.
So we know for sure climate change is happening. It’s caused by human activities. It’s already causing kind of permanent damage to ecosystems to livelihoods. And to you know, it’s it’s the climate it’s it’s not like it’s something that every earth system economic system social system relies upon, even though we don’t kind of witness it. And we don’t you know, it’s so fundamental to our survival that we have things work that we that we don’t appreciate it like air that we breathe or something. And we’re permanently altering it. So I mean, Homo sapiens evolved over the last number of 10s of 1000s of years, at a time when the Earth’s climate was very remarkably stable. And its post glacial period where our civilizations evolved. It is at a time when the when the Earth’s climate is very hospitable, not too hot, not too cold, perfect for human societies to flourish, and the concentration of CO2 in the atmosphere at about 280 parts per million was very constant and the concentration of co2 in the atmosphere, it’s the main greenhouse gas. It’s something like a thermostat knob in the corner of a room that controls the temperature of the room. And we’ve now turned that knob up, we’ve now increased the concentration of co2 in the atmosphere to around 420 parts per million. That’s an increase of about 50%. Since the pre industrial age, since we’ve started burning fossil fuels, and clearing forests, for agriculture, that is now kind of beyond far beyond the level of carbon in the atmosphere that human societies have witnessed. It’s the highest and millions of years. And the really scary thing about it is there’s a big lag between the carbon, the atmosphere and all these impacts you’re talking about. And the problem is that globally, emissions have not yet peaked. And yet, they haven’t come down and will only start getting worse when CO2 emissions go to zero. So I think there’s a misperception that, you know, if we kind of start going on this sort of lowering trajectory, things will start to get better. But it’s actually only when we get to zero emissions, that it stops getting worse. So it’s a huge amount for anyone to take. And I don’t blame anyone for switching off, and just trying to get on with their lives, because it is, you know, you have to go through almost a process of grief to really kind of take on board what’s happening. So, you know, it’s difficult to be this kind of harbinger of doom, but that is really what the what the facts are saying, and, and unfortunately, we’ve known this for decades, this is not new science, but the kind of the, the lack of political and public engagement with this is quite astonishing, really. There is starting to be a lot more political engagement, but you still see, you know, these issues being downplayed for ulterior motives, which is worrying. think the main reason for that, and this is more gut instinct rather than something I’ve you know, studied and quantified and so on, is this, policymakers, both national account local councillors and so on, think that these climate measures will be unpopular. So they, you know, there’s a short term election cycle, and they, they have to do things that are essentially that they think are popular, I hope that they’re wrong, and that the public are further ahead than they are. I’m also concerned to be becoming aware that like the support or not for different climate measures is becoming part of a sort of a cultural warm, so are you one of those sorts of urban greeny Bike People who’s taxing us and so on. You know, even if a particular measure like you know, local wind farms, or a biplane, or putting solar panels in your schools or something, even if those will objectively bring lots of local benefits, they might align with the kind of non climate agenda just because they want to, they don’t want to align with, let’s say, the green agenda, you know, and that is very worrying. Because, I mean, the thing that was very promising from the last two years in our in our Climate Act was that every political party in the Dail voted for these carbon budgets that require very strict reductions in emissions. And when they object to the actual measures that are required to implement it, to see those emissions reductions, they have to be called out, you know, they have to be, you know, or have they have to propose other measures which which, which deliver the savings. But there’s a whole other host of barriers as well, it’s not just political. I mentioned already the various institutions that are the state institutions, mainly that are required to regulate to manage, you know, our infrastructure, mainly in our laws and our kind of the processes that we do this huge inertia, they’re fundamentally behind all this, the status quo is just very, very powerful. moving that around even people’s mindsets to see the what we’re doing, people’s day to day activities are what is really causing climate change, it’s very painful realization. And people want to think that it’s China, or it’s this big companies, or it’s the, you know, farmers or something like that. It’s everything. You know, carbon is so integral to everything we do, it’s very difficult to change those mindsets. The status codes are also very powerful for institutions. We have inertia in the civil service, in our laws in our in the ways that we can do things. And, and it’s very slow and hard to turn that around without sort of revolution in some some sort of big, fast revolution. And there’s also inertia in because, you know, the fossil fuel industry is added as a $2-3 trillion they made profit last year. How can you kind of tell this industry, which is one of the most powerful industries in the world, that you have to either transform or go extinct? You know, it is, you know, there’s this huge amount of built infrastructure you know, communications influence power built into those companies. And they’ve clearly exerted that bias and they deny the existence of climate change or obfuscating the, the narratives and and pointing to for solutions.
In the future, how do you think we look back on this time?
I mean, it’s a bit like how we look back now and think you know remember how people used to smoke inside pubs. And it used to be normal to just come and smoke smoke inside people’s houses or drink driving was normal, or, you know, driving kids around without seatbelts or any harness in the car, you know, we will look back and think how can the reckless that was, and I hope it can come quickly enough with this mindset that, you know, how, because how we got our energy, we just burned it. We just burn stuff to get our energy. And stuff that we know scientifically is causing this, you know, such devastating effects. You know, I think that it will take climate change impacts to get a lot worse before we come to that, unfortunately. But it will come to that. That’s, I think we’ll just simply be shocked that we burned stuff to get energy.
Picking up from Hannah’s point about our future selves being shocked that we burned stuff to get energy, why are we feeling that shock right now? Or if we are feeling it? Why are we acting on it in any sort of a meaningful way? The scientific reality of climate change is clear. Yet, it seems that’s not enough for us to collectively respond. As Hannah said, things just might have to get worse for them to get better. The question I have is what’s going to make the difference what might help turn the tide, and see us really tackle climate change. So I spoke to Heather Douglas, a philosopher of science and an associate professor at the Department of Philosophy at Michigan State University in the United States.
In the US, about a third of the US total greenhouse gas emissions come from household energy use, from the you know, gas that’s used to heat stuff, the hot water and the cook cook with and electricity that’s used in the household and the cars that are run by households. If you put that together, that’s about 30 32% of US greenhouse gas emissions. So that has to be tackled at the individual level, because we have to make choices about which car to buy, about changing out our gas hot water heater for a heat pump, hot water heater, which I haven’t done yet. I’m working on it, about getting heat pumps, I have put heat pumps in my house to try to reduce the gas dependency. But I have also really old house a really old house. And the heat pump. In it really cold climate gets well below 20 degrees Fahrenheit, well below 10 degrees centigrade in the minus 10 centigrade in the winter, it’s like cold in continental US climates. You know, even the really good heat pump, the best ducted heat pump that you can get doesn’t do it. It can’t do to carry all of it. So we’re not there yet. But I can still lower, you know, I’ve managed by getting a plug in hybrid car, because the charging system isn’t in there yet. So that reduced our gasoline issues by about 75%. And putting solar panels on the roof, there are things I can do. And they take lots of tons of carbon off our annual household budget. So we’ve reduced it by at least a third and we’re headed towards two thirds. Right, fantastic. Is that going to be sufficient for the globe? Absolutely not? Of course not. Of course not. So it’s in many ways. It’s like COVID, you have to get your own vaccine, you have to wear a mask. But you also need the communal systems that encourage masking that encourage vaccination that support the health care system that you know, figure out new treatments that will protect the vulnerable. There’s a lot of I mean, climate I think is even more complex than COVID. Yeah, there’s there’s a lot of needing both the collective communal action and the individual action. But in some ways, you can’t just focus on the communal without also attending to the individual. Just as if you just focus on the individual attending the communal, you’re gonna miss the mark,
We all have individual agency, right? And what like what can we do with that in order for us to change our own lives, but in order for us to encourage the collective response to climate as well?
Oh, that’s a really good question. So I think it’s actually, for me, I’ve had fun thinking about how would I decarbonize my household? I think the other thing that needs attention is the local level of policy making. And this is where it gets really hard and also really boring. So, you know, what are the rules that govern your local utility? Are they good rules? Are they being incentivized to do the right kinds of things? How easy is it to put rooftop solar on? What are the connection charges? What’s the backup? What kind of – is it net metering or something less, you know, less good? What are the building codes? Right? These sorts of rules govern a lot of the communal stuff. But wow, is it boring, and nitty gritty? Localized – like it’s, you know, state level or county level or city level stuff. And that’s where the communal effort really has to come into play. The good news is, I mean, this is, and this is why I think that has to happen. Right now, the cheapest new form of electricity generation is renewable. Right? The levelized costs of solar and wind are cheaper than anything that’s fossil fuel driven. Electric vehicles over the lifetime of their use are going to be cheaper than any internal combustion engine, right? Because of the lower repair costs and lower fuel costs. And that more than swamps the upfront initial cost. So why aren’t we seeing, you know, why is it why are people still building natural gas plants to generate electricity? Why are they still pushing, you know, internal combustion engine cars? A lot of policies? Where are the Chargers? What are the charges on going to, you know, charge per kilowatt hour electricity, if it’s not coming out of your garage? If you don’t have a garage? If you live in a condo, an apartment building? What are the rules about charging cars in, you know, apartment buildings and condos where you are? Then we’re at a much, you know, sort of, that’s where all the speed bumps are. And at that level, we have to pay attention. And it’s really hard because nobody wants to think about it. But if you get we get this, right, I mean, just thinking about the shift to electric vehicles, where charging happens in parking lots and garages, either communal garages or individual garages. We have all these gas stations, that we get to decommission. What are we going to do that space is often in prime locations in cities, what gets to happen to that wonderful space. So there are real opportunities that might motivate us to actually pay attention to the details going forward.
Climate change is complex. And so are the controversies and scandals there in our responses to climate change. You’re setting us on course for a disaster. Policies excessively focused on people taking individual action as if that’s going to solve the issue. Large polluters are unchallenged as they greenwash deny basic scientific realities, and see doubt around climate change and our need to respond to a recent London Science Museum sponsorship deal with a major oil firm included a gag clause, the museum incredibly agreed to take care not to say anything that could damage the firm’s reputation. These scandals represent failures of leadership on many, many levels. And without leadership and a sense of solidarity. It will be impossible for us to meaningfully respond to climate change. And so I wonder how things might be different? Might we embrace the power of community to change the narrative? Might citizens assemblies that hear expert views and lived experiences offer hope? Through talking and listening, can we find the common ground and establish the trust we so desperately need? The clock’s ticking, the trust trace is underway.
Archive News Audio 39:20
Our world is at the crossroads and our planet is in the crosshairs. We are nearing the point of no return of overshooting the internationally agreed limit of 1.5 degrees Celsius of global warming. We are at the dip of a tipping point, but it is not too late.
The Trust Race is supported by PERITIA, an EU funded project investigating public trust in expertise. Grant number 870883. This series is produced by Shaun and Maurice you can find me on Twitter @shanedbergin.
Produced by Shaun and Maurice
The Trust Race is an output of the Horizon 2020 project PERITIA.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 870883. The information and opinions are those of the authors and do not necessarily reflect the opinion of the European Commission.