Hello, and welcome to the xi research podcast. I'm your host Diego Silva. Before introducing our guests, I want to acknowledge that record recording on the unceded territory of the Gadigal people of the Eora nation. This is and will continue to be Aboriginal land. And I pay my respects to those who have and continue to care for Country. Today I'm joined by Jane Williams to discuss their paper, Why Ethical Frameworks Failed to Deliver in a Pandemic, or Propose Alternatives and Improvement. And we can find this paper in the Journal of Bioethics. Very excited to have you here. Thank you, Jane.
Thanks so much for having me, Diego.
To begin, I was hoping that you could provide a summary of the paper.
Sure.
So this paper was quite a long time coming. It's about frameworks. Frameworks are a really commonly used tool in public health ethics. And they're, I guess, seen as a wee bit of a kind of fix all or a panacea, I suppose. So if we have an ethics framework, the thinking goes, then we can apply it to tricky problems that happen in public health. So this paper is about why that might not be necessarily very helpful or appropriate, particularly in a crisis, public health emergency, and whether or not suggested alternatives, particularly one called pragmatism or a pragmatic approach to to fixing problems, I guess, is an improvement.
Thanks. I was wondering if you could sort of elaborate a little bit about what the arguments are? Like, so for example, I guess two questions I have are, first, what is a framework? And I guess the other one is then, you know, what, what did frameworks ever do to you guys? Why? Why attack frameworks?
Such a vicious attack in the pages of bioethics? Okay, so a framework is a tool that is intended to provide guidance to, presumably non ethicists this is this is sort of part of the problem. It's not always very clear who, they're for. So they can do different things. The earliest frameworks came sort of at the beginning of public health ethics as a discipline, if you like in the very early 2000s. They tended to give a list of considerations for people to think about when deciding whether or not their public health intervention was ethically justifiable. So those were things like, well, that the the original ones were American, so they tended to really be focused on whether or not at its infringement on individual liberties were acceptable. The early ones anyway, tend to ask a bunch of questions for people, presumably policymakers there, that's not clear to consider. They asked some times questions about substance, sometimes questions about procedure, sometimes both. They tend not to, they tend not to be very directive, they don't really tell what people they don't really tell people what to do. They tell people things to think about. They have become a little bit more sophisticated over time, they're still pretty much the mainstay, I would say, of public health ethics, in that any time an ethicist is asked to get involved in public health, generally, they either suggest or are asked to provide a framework. And actually, interestingly, we've had some feedback from people, public health, people who have said, Oh, God, yeah, you're right, hate frameworks, but we're always asked to write them. So we write them such, such as the nature of the beast, really, what was the Oh, what did frameworks have to do to us? Well, this was sort of interesting. I mean, that they are, there are some problems with them. Right? So if there's a list of questions, saying things like, is the intervention fair? And does the intervention maximize? You know, are the outcomes good? Or does it does it essentially do a sort of greatest good for the greatest number kind of thing?
There's a lot of questions that could be quite contradictory. And it's not necessarily clear how to prioritise one question over another. This was something that and this didn't really make it into the paper because it's not evidence as such, but during COVID A bunch of us well, all of us really were in all of those late night calls that probably are familiar to a lot of people who work in public health. Some of those were with people working in hospitals who were like we've got This framework, we have no idea what to do with it like, what does this even mean? How does this help us to make decisions about what to do in our emergency room, or whatever? That that's anecdote rather than evidence. It's not something that we could use in the paper, but, but it was a little bit unsettling. We knew they weren't super useful. What we hadn't really thought about was that actually, they were causing people some distress, I suppose, in trying to figure out what to do with this document that was supposed to help them.
So as I was reading the paper, one of the questions that I kept coming back to, and I don't know if this is, you know, full disclosure, I've been part of groups that use and write frameworks. Yeah, we all have, right. Yeah. So part of me was like, Am I just getting defensive? I don't think I am. But, I guess one of the questions I had repeatedly when I was reading it was, is the problem the usefulness of frameworks? Or is that that we expect too much from frameworks? So you gave the example? That anecdotal example of people being like, you know, how do I use this? Yeah. Is it a matter of they're just not any good? Or very, very limited use? Or again, do we expect too much?
And that's a great question. And I think, you know, classic response, I think it's a bit of both. I do think that putting a sort of general framework out there and hoping that people know how to use it is not helpful. I think the usefulness of them, if you've got somebody to kind of translator, if you like somebody to help you talk through the problems. And I think that's fine. It's more just that once. I do think that frameworks are intended to be a document that can be picked up and used by, by end users. And as I've said, it's not always clear who those people are. Which is kind of odd, because I don't know why we would expect people without any background and ethics and often social science at all, in terms of thinking about what can be quite difficult problems, I don't know quite how we would expect people to just take it and run with it. So the use of the use that sort of end user, part of it is problematic. What we found also, though, was that the frameworks themselves didn't necessarily get to the nub of the problems that people were dealing with, I suppose. And that there's an example in the paper about In Italy, at the beginning of 2020, when it was all terrible. About the scarcity of ventilators, I believe it was or ICU beds. So there was this idea that that is a common problem that we see when there's an emergency, there's scarcity. And so the so people were talking with Italian, presumably ICU doctors, about what to do, how to choose who should get a ventilator, or who should get a bed, essentially, that whole, you know, who should live who should die sort of thing, which I'm sure was incredibly difficult, except for that doctors weren't thinking about it in those terms, because they had done all sorts of really creative workarounds to create to, I guess, minimize that scarcity, instead of making decisions based on the resources that existed at that time, that would have involved saying to some people, I'm sorry, we can't give you care. They had changed things up quite significantly, so that that wasn't really an issue. So they what that meant was that the framework that they were looking at, or the set of the set of ethical questions that they were being asked to consider weren't actually relevant to the problem that they had. But they were still framing the problem in a particular way, in the paper that we refer to, they call it the disaster imaginary, which I kind of love. That creates a really awful set of assumed problems that may or may not be the case. And I think that is kind of harmful, when we assume we know what's going to happen. And don't really account for the the experiences and the knowledge of people on the ground who might have different and more creative, and I guess, ultimately more ethical ways of dealing with things, which I guess brings us to the pragmatism part of the paper, right? So pragmatism is about, I guess, looking at things in a different way. It's a much more sort of procedural way of problem solving that doesn't just look at what's the evidence, then we're going to act. So I don't think pragmatism is the answer. I will say that upfront. But pragmatism could have been really useful in this Italian example, where if people just listened more to the people on the ground, and then responded to that set of questions rather than the predetermined set of questions that were in the framework, that would have presumably been more useful for the people tasked with making those decisions.
Yeah, I really actually liked that example in the paper. Because one of the things that reminded me of is the sort of the the adage everything looks like a nail to a hammer, I'm butchering the the actual adage itself. But there is the sense in which if all we're giving policymakers are frameworks, then that's going to, and pardon the pun, frame and limit exactly what it is that can be done. So I actually think that's a really evocative example.
You've you brought up and already talked a little bit about pragmatism and the role that pragmatism might play and the role that pragmatism plays in your paper to support ethical decision making. So maybe you can elaborate a little bit about that. But I also want to ask you, you know, pragmatism, usually we think about in the context of epistemology. And you know, we're thinking about pragmatism in terms of the values that ought to guide how we think. And I guess, descriptively, we use pragmatism to describe how we actually do think. So how does this then tie back to this question of ethics in your paper? And I guess, in the field, how does it help resolve some of the challenges associated with ethics frameworks, when pragmatism tends to be questions or deal with questions of epistemology?
Yeah, that is a great question, Diego, and How amazing would it have been if you'd been given this paper to review? So the reason we talked about pragmatism in this paper was that there was a, I guess, a little flurry of activity. In early 2022, when we're writing this, clearly, now, it is the second half of 2023. And the paper has just come out. So that's, yeah, that's publishing for you. And pragmatism was being presented as a kind of next big thing as a paper, not perhaps next big, big thing. But it was a response to the scientific framing of the pandemic, basically. So the idea was that we can't just be all science, science science all the time. This is what was being published. I'm I'm drawing particularly on their greenhealth paper. It was in social science and medicine. And the idea that we need to be drawing on different kinds of expertise. So that, then for us, I guess, becomes more of a procedural thing. And you, as you said, it's an epistemological, originally an epistemological idea, like, what, what are we, you know, what sorts of knowledge are we drawing on? I guess? So it might seem an unusual suggestion as an alternative to ethical frameworks, because they're not really related, right. The idea I think the sense in which we've taken pragmatism was about a procedural how a sort of procedural justice in a way like not, and I'm not saying who gets what I'm saying more like who gets to be involved in the decision making. The idea that people on the ground, people with lived experience, should be involved in decision making. Didn't happen very much at all in COVID. And there weren't there. You know, there have been constant calls about we need to have more social scientists, we need to have more ethicists, we can't just be relying on I guess, biomedical evidence. We got to know quite a lot about how the virus behaved in the body. We didn't know very much about how people behaved around the virus if you like. So it was the idea was at taking those sorts of knowledges. And making them important, you know, giving them a voice would be a really important way of helping people make decisions as well. One, and this is, I guess, I got a couple of things to say. One is that in Australia, we have this new upcoming not yet new Australian center for disease control or ACDC. Which I kinda love. The initial framing around that is incredibly biomedical. So it's a, it's slightly depressing, we've got work to do, it's kind of like have we learned nothing? I mean, I hope we've learned a great deal. But an idea that could could help a bit of, I guess, ethically justifiable procedural input that would hopefully help things would be to have some sort of standing committees, some sort of standing ethics and social science committee involved that could be, you know, really thinking about what's important, what matters in this situation, if we are putting forward this particular thing such as, I don't know, stay at home orders or a bunch of, you know, vaccine mandates, whatever. What are we actually doing to people, we know what we're doing to the, to the virus, but what are we doing to people? And does that matter? What matters? Who's it going to affect? How will it affect these people differently? All of these questions presumably, could have been going on in the background of COVID decision making, but there was so little transparency that who would know, you know, and I think that's a big part of the pragmatism argument is that it all needs to be super transparent. And also that we need to learn from our mistakes, right? So that transparency means that we need to be trying things, letting people know what it is that we're trying, making, evaluations and assessments public. And then learning from those, you know, not just doing the same thing again and again. So I'm not sure if I've totally answered your question. But I do think there are really valuable things to take from pragmatism. It doesn't you know, that they're not going to they're not a perfect answer. But bits can help.
Yeah, look, I think in the paper, you Yes, correctly note that it's not a panacea. And it's not a matter of either or, I think is one of the conclusions that you that you draw. Yeah, look, I mean, in case anybody from the burgeoning AC DC is listening. So the Ethics Committee stuff is really interesting are sort of ethics. So the Public Health Agency of Canada has a public health ethics Consultative Group. And the reason I know this is because I'm a member and chair of that committee. And it's, it's, it was a really interesting time to be on that committee as part of P- hack. And, I mean, I have non disclosure agreements, I'm limited in what I can say. But I guess one of the things I would note is it was interesting, who from within the organisation, was coming to ask for advice and ask our input, and who there was large silences of? And that got me thinking as to why is it that certain parts of an organisation are sensitised and others aren't? And to what extent to come back to your paper to actually make it tangible. But to come back to the paper? You know, P-hack has a framework, and it's limited for the exact reasons that you outlined in your paper? Does it have an unintended pragmatic result, which is sensitisation? And I don't know the answer to this. So it's it is it is genuinely just a question. Because again, I just noticed this phenomenon, we had the same sectors of the Public Health Agency of Canada coming to ask questions, and other ones that were silent, even though the entire organisation was beyond overdrive for, you know, two and a half years or however long anyways, but the schedule reminded me when you mentioned, the Australian CDC. You also mentioned, like you said, sort of bringing in ethics people on board to have these discussions. One of the things that I thought was most interesting, troubling, not sure what how to describe it exactly, is that we saw during the COVID, 19 pandemic, just how divided public health ethicists really are in a number of really important positions, and then sort of the programmatic and policy decisions that followed from that. So whether you take a framework or a pragmatist approach to decision making, how, how should we account for competing views, not just of evidence, but of public health ethics itself?
Yeah, absolutely. That's, I mean, that's a great point, you know, because different people will be really invested in different kinds of thinking. So one thing that I really that just struck me about what you just said Diego is about people coming to you for advice. And I quite love that. Because when people are coming to you with a particular problem, you presumably can help them think through that problem. Rather than say, Well, the most important thing here is that people are free to do whatever they want. Like, I don't know, how that thing works. But I would think that a pragmatist approach would more be around conversations and laying out options so that other people can decide what's important, rather than the person giving the advice, although, I mean, you'd hope anyway. There is definitely, in ethics frameworks is definitely you know, particular perspectives, you know, what matters is the thing that comes out in the framework. But, you know, really frequently that is not explicit as well, so that you'll read a framework for your reader and ethics thing, and you'll realize that the most important thing for that author is, you know, limiting the number of lives lost, for example, which is certainly a valid thing. Or that people not have their people not be forced to behave in ways that they don't want to behave, you know, all of those things are valid, except for that they are all valid differently at different times, I think. I'd think being a, an ethicist with a particular bent is fine when you're writing a paper, you know, you you do you. It's not necessarily fine when you are in an advisory position, and you're helping people understand the options in front of them.
Yeah, look, I think you're spot on, I think one of the things that was interesting, or is interesting about being part of this Consultative Group, is, you know, we have various voices there, you know, to make up between six and eight people depending. And you have to not only justify and translate to the person that you're giving advice to, but justify to your colleagues in real time. And it forces you into being pragmatic. And now I'm using pragmatic in its colloquial sense, not in its philosophical sense. But it forces you to be practical. And I think that's one of the things that you guys, I really liked about the paper was the invocation of discussion and deliberation with different populations, which, which you mentioned already, as well. But also, this being a way of trying to tackle what is ultimately something that is complex and messy, and nonlinear, and dynamic and uncertain. So I think I think a really, really that that really resonated in the paper was exactly sort of the lean very clear on the cards on the table. Like this is messy stuff. And there's a sense in which frameworks are simplistic by design. So what's the, you know, what, it's kind of, you know, square round the square peg, as it were.
Yeah. You know, one other thing, a point that I would like to make is that with heaps of work, and all best intentions, you can't make people take up your ideas, which is sad, but true. And I'm thinking about before COVID, a group of us did work on how to allocate scarce vaccine in a pandemic. We, This was before COVID. So it was premised on the idea of a pandemic flu, we did a heap of work, we were proud of what we came up with, it was very multidisciplinary. We had presented it to government, all of that kind of thing. And then when COVID happened, it wasn't taken up. So that's interesting for a few reasons. For me, it speaks so and I will say that we had written a framework to be used in that specific situation, you know, allocation of scarce pandemic vaccine. But then some things happened. COVID was different from flu in a lot of really important ways. So it felt less, even though the principles were the same. There was a fair bit of yer but, kind of response that went on. And I should say, I wasn't in the room for any of this. And I, this is all like so heresay that. But then it also doesn't account for politics, you know, so when, when we're scrambling, and when we've got a limited vaccine, and when there are different agencies on the ground trying to deliver to different people, you can have all best intentions of following a framework about who gets access first. But then there are all these really messy realities about who's best positioned to deliver the vaccine, or who can go to the massive vaccine hub to get it. And all of those things that end up sort of undermining the really careful and our case justice based arguments that we had made. And here anyway, it kind of turned into, like, initially not so much. But then it was a bit of a, you know, first in best dressed approach, which was explicitly what we had argued against. cheery note for you.
I mean, at least it was best dressed, right? It wasn't just first, it was first and best dressed. So I mean, you know, qualifier there. Just wrapping up. I'm wondering if you could tell the audience a little bit about what you're working on right now.
Oh, yes. Somewhat depressingly still working on COVID things. Just when we thought it was in the in the rear vision mirror. We have been doing so when I say we I'm talking and I should say also that this was a multi author, endeavor, so led by Chris Degeling, who I work with at the University of Wollongong, as well as being an affiliate of Sydney Health Ethics. So we have been doing a whole lot of data collection from people who were essential workers who were not healthcare workers in the pandemic in order to try and figure out how to do better next time. So I've been talking to teachers and supermarket workers, and experts, actually, people who were in the media, and so on. So we have a whole lot of really terrific data. And now we just need to write some great stuff.
I, I'm very much looking forward to the fruits of this project. I think they're fascinating. I mean, I I'm going to fanboy for a second, but I really enjoy the work that you and Chris and your team do. In part because I think that you're asking and having conversations with people that ought to have a voice to go back to sort of the deliberative aspect of the paper. So kudos to you looking forward to the write ups. I want to thank you for being part of this podcast today. I want to thank you for listening online to this episode of The SHE research podcast, you can find the paper we discussed linked in the episode notes, along with the transcript. SHE pod is produced by SHE network and edited by Regina Botros. You can find our other episodes on Spotify, radio, public, anchor, or wherever you get your podcasts of quality. Thanks again and thanks for listening. Bye bye
