Hello and welcome to FAB Gab. This is the podcast for the International Journal of feminist approaches to bioethics brought to you by FAB Network. My name is Kathryn MacKay, and today I'm joined by Floor Ciujpers and Petra Verdonk to speak to me and all of us about their multi authored paper, 'Who am I to judge these things? intersectional dimensions of self silencing of people with a neuromuscular disease in a clinical trial.' Hello, Floor and Petra. Good morning. Good morning. Good. Thanks for joining me.
Yeah, thank you for inviting us. Pleasure.
I wonder if to kick us off. One, if you would mind just giving us the overview of the paper, maybe Floor? You want to go ahead? Yeah, sure.
So our paper actually focuses on the tension between the call to diversify research population, and include underrepresented groups, on the one hand, but on the other hand, the the specific vulnerabilities that might arise in these settings is clinical settings if they are not tailor made for these underrepresented groups. So to explain it very simply, what we see in our study is that merely adding or fixing the numbers is not enough to enhance social justice, we need to do more. And then to summarize what we did. So the main question that we asked in this paper is how does social identity affect the experience of participating in a clinical trial? And what comes up if we look through an intersectional lens? So what we do we do, we analyze interviews with people with neuromuscular diseases who participated in a clinical trial. And his interviews were actually collected in a different setting where no attention was paid to socialist identity factors. In our study, we wondered, what do we see when we closely scrutinized these interviews, looking through such an intersectional lens, in other words, by examining how aspects of diversity and power dynamics shaped the experiences of these respondents, and what came out, and I'm taking quite a shortcut here. But this data actually shows that in clinical trials, that clinical trials do not occur in a social vacuum, but in the context of power dynamics, which can make certain people's specific, more vulnerable to experience research related harms and risks. And in this specific trial, these power dynamics manifested in actually participants at times silencing themselves. And this actually led them to or manifested in them overstepping their physical and emotional boundaries at times. And these aspects, we argue, are quite difficult, difficult to capture in more traditional ethical procedures and guidelines. So that is a short overview. The paper.
Wonderful. So did these. You mentioned that this research that you drew upon came from a different study? Is that a study that you were involved that you were both involved in your? No,
neither of us were involved we had, it builds on, on another project that we did one of our team members had done a PhD on this particular group studying the trials. She did a responsive evaluation of clinical trials and defended her PhD a couple of years ago, and then we got this, this project afterwards, that was focusing on the development of an intersectional tool for secondary analysis of of interview data. Because we thought there there must be a wealth of of interviews out there, conducted with patients with participants, but not from an intersectional lens. So neither the researchers nor the the participants would, you know, be aware of possibly the role of class or gender or whatever it would be in these interviews, but very implicitly, so we thought we need to develop a tool so that we can re analyze these these interview data, and then floor actually use that tool. And so it was like kind of a second hidden aim that we did not describe in in the paper, but to validate the tool to see what it could bring. And so we're very happy with what it brought.
Yeah, yeah, that's great. Very cool. I guess that kind of answers the question about what motivated you to undertake this work a little bit.
This was actually a result of the master thesis that I wrote for my medical studies quite a long time. We developed the paper for a couple of times more Written and edited a lot. And then it turned out to be this paper. Yeah.
Excellent. So you've given us a pretty good overview. But I wonder, especially if you wanted to maybe highlight the kind of the sort of ethical aspects of the argument for our listeners, maybe?
Yeah, definitely. So I guess what is important to maybe first explain is, I mentioned this concept of cell silencing. But I didn't describe yet what we understood or how we conceptualize it. So we understand cell silencing as a kind of psychological strategy, that in which individuals repress their own feelings and thoughts and judged their own behavior, actually, from external standards to prevent being rejected or excluded. So in that way, we also understand it as a result of marginalization processes. And in this clinical trial, we saw that people actually were self silencing ended this manifested in more research related harms, and burdens in a number of ways that might not be captured in these more traditional ethical procedures, such as informed consent or a risk benefit analysis. And I can give some examples to clarify our arguments. So the first example, the first way in which style of self silencing mess manifested in our data can be explained by so we saw that some mothers who participated in this clinical trial, which consists of an in cycling intervention in order to see whether this will improve their muscle strength, we're overstepping their physical and emotional boundaries. So one mother would inherit every form of neuromuscular disease actually participated in a hope that it would, that this research would contribute to finding a cure for her children, who also have the gene that caused this disease. And she mentioned actually feelings of guilt and shame for passing on this gene. And she actually continued with quite burdensome what she experienced as burdensome interventions up until the point of crying were to research it, and to say, Okay, we have to stop doing this. And this is actually an example where we can what we perceive as also an intersection between having a disability and being a woman. So it's a woman. So gender enable is processes that manifest in overstepping boundaries. Another example is where a participant was overstepping her physical boundaries was a woman who said, Well, I'm so used to living with a disability, I'm so used to kind of feeling some pain all the time. So during the exercises, I went on and on, because that's what I'm used to. And this resulted in inflamed cartilage, which then had the effect that she was never able to bike again. So here, you also see kind of self silencing, as manifested in overstepping these boundaries. And such aspects are dif difficult, or to capture within traditional ethical guidelines. So I'm exploring that a bit further. So there's, of course, the principle of a fair or unfavorable, favorable risk benefit ratio within clinical trials. But what we see in our data was that people were actually downplaying these quite serious adverse events, due to these processes of marginalization. And this is an example of the ways in which an intersectional lens can actually broaden your view on these more traditional research ethics guidelines and see what remains hidden in these guidelines.
Yeah, and it seems like one thing that really struck me when I was reading it was how, and you do touch on this in the paper to the process of informed consent, simply doesn't capture this kind of thing at all.
Yeah, so that's actually the second example that we give in the in the article. So we we refer to the risk benefit analysis, but we also explain how self silencing might also influence informed consent procedure. So what we see in our when we look into these interviews is that there are people who say, well, it was a quite a burdensome intervention, but hey, I signed this consent form. And I'm kinda it's kind of a promise that I made to the researcher and I don't want to break my permits. So it kind of in that way, fueled their tendency to continue these heavy burdens. And in that way, it kind of thanks then it was, we can at least say that it's non performative in these instances, because it's, of course instale to protect the participants autonomy, but what if it's, it's doing something else when we look into when we take into account these power dynamics. So that's also an example of how maybe research are ethical guidelines instale to protect people do not actually perform what they should do when we don't look, when we do not take into account these intersectional factors
as your anything you want to add, I just realized that these are the artists, the issues that that are generally considered, like noise in clinical studies, like these are the factors that they want to control for, because they are seen as confounders, instead of Yeah, how their role plays out in in how how people actually deal with the particular intervention, either drugs or, or whatever intervention. That is. And I think it's very interesting to especially highlight and study these aspects in clinical research as well, which requires from, from clinical researchers that they take social aspects into account rather than control for them.
There is something that another thing that I was thinking when I was reading your paper that I wanted to ask you about, because you mentioned, so you're doing an intersectional analysis. So it's sort of disability times gender, or disability times gender, times class. And, and these really provide a really rich account of what's going on, I think. And in the, in one of the cases, I think that's disability times gender, you talk about the mother who's got the potentially heritable disease, but I was also so this made me think later on in your paper, when you're talking about how participants perhaps didn't want to be too critical of the medical establishment, I was trying to think about how the kind of promise of benefit the promise of, of research, the promise of participating in research, the idea that there's something reciprocal going on here that's going to benefit others. So for the mother, it was to benefit her children. But often when people participate in research, it's like, this will benefit the kind of unknown, unknown people, but it will benefit, you know, others like me, or something like that. I wonder how you think that that idea of kind of like solidarity or reciprocity, fit into people's decisions to downplay their issues? Or maybe you don't think that comes into it at all? I mean, it did sound like some people, like you've mentioned how to just been living with pain for such a long time that maybe it didn't even occur to them. But I was just wondering if that idea that I'm doing this, I'm doing it for the greater good. And kind of, you know, this, this struggle that I'm facing is ultimately worth it or something like that, if if something good comes out of the research, I wondered if that came into it?
Yes, that's a good one. And it definitely showed up in our in our transcripts, where people are saying, well, it's just the hope of doing something, making at least something out of out of this and then contributing for future potential or future cure. And I guess, it's a valid, very valid reason, of course, to participate in clinical trials. I guess that's also not the part of kind of the thing that we, we don't want to say like, oh, this should not be a reason, just hope or even though it's undefined, of course, we have valid reasons to participate in a clinical trial, but what we want to highlight is how that sort of psychological mechanisms can create more can can kind of predispose people to risk. If research do not take it in researchers do not take it into account. So I guess, maybe researchers or research ethics committee members could be more informed about these mechanisms and then see how the research setting can also become a vulnerable making circumstances whether it can hurt can kind of predispose people to these vulnerabilities. Without saying that hope or reciprocal aspect you're talking about cannot be valid points for reasons participate.
We've done another study that that relates to this, which which was about a literature review about the participation of women are participant patient of women in cardiovascular trials? And we see there that altruism is for women a particular A profound reason to participate. Whereas for men, it more often is a reason to participate, because they think they will gain some more information on lifestyle and health and some more knowledge about these issues. So if you look at that, from a gender perspective, you see that definitely men, over all have less knowledge on health than women do, because that's assigned to women and in most societies. But this altruism argument turns against women when, when it's when it gets exploitative. And women may do that themselves. That's exactly what we see women do in, in real life. One of the one of the examples I think, one woman gave was, she had this neuro muscular disease. And she, there's this one sentence that I found very interesting. We put the, we put the sentence in the in the tool, because it's so very insightful. She says, Yeah, well, I have to take, she has two teenage sons and her husband, she's in a traditional marriage. And then she says, I have to take the bike to get the groceries, because my husband needs the car. And parking is really expensive. And so in a way, this type of sentences are very, like, in a way for clinical research is very non informative. But for us, they say everything they say something about the traditional relation that she's in, who gets to use the car, for what reasons that is whose most valuable most important, she actually also implies, we know that later in the interview, she discusses in a way, what we would would identify as the two lazy teenage sons who won't help their mom. It's also very Dutch taking the bike. So it's very interesting, if you if you pick up on this type of information, you hear a lot more. And then you realize that when this woman participates in a trial, she will, she will bring those values that she finds important in her life, she will bring them to that participation. And it's very easy to exploit that if you're a researcher. It's very, I would say important that we better understand these processes.
I wonder if you faced any specific challenges while you were
writing this paper, collecting the research event? Yeah, I guess one challenge relates to the point that I was making this now is that so as a rich researcher doing trying to do an intersectional analysis, you of course, bring your own identity and that colors the way that you interpret interpret at stories. And there's actually two fears that I had as also being a junior scholar. So one is the fear that you might project things on people that are that they don't agree with, or that they that might not be that well, the right thing to do. And the other one was that you miss them, you can also miss things because you're not attuned to it because of your own social identity. So in both cases, you potentially harm participants. And you of course want to prevent that. And you also want to make transparent what you're doing. So I guess a way to overcome try to overcome these challenges is to what we did is to talk a lot with a research team and to see like, okay, so what are our potential blind spots, but then the problem was that our research team was also predominantly white, and university educated. So these are the important aspects, we need to diversify our research teams, if we want to do proper intersectional analysis, otherwise, there will be blind spots reproduced. But we also think is an important way to overcome these things, or at least address it is to clarify in your paper, it is this social position of the research team. So then others can kind of interfere with what kind of claims that you're making and from what position you're making them. And that is a way to increase the transparency of the analysis. But these are quite difficult aspects for in such a research
Yeah, well, the other let's say other more pragmatic challenges or how to write it To keep it short, it tends to it tends to be lengthy, this type of reflections and it's it's hard to publish that. But it's still it needs to be done because it's very insightful and informative. I think.
That's interesting. Empirical bioethics isn't something that I know very much about. I've said that on the podcast before, sort of not my, not my zone. But I'm always curious to know more about it. And so I, I guess I just wonder Petra, if you can say more about how that might be a particular challenge for doing really good. Empirical bioethics is just the restraint of trying to get something into a short format or something out of these, like really rich and detailed interviews.
I'm not a bio ethicist myself. So I do research on gender and diversity in in public health and medical education. And keeping the paper short is a challenge, by definition. Because especially with this type of research, you want to be able to explain an essentialist. So that's a challenge. If you start talking about gender, and men and women, and you only have 2500 words, it gets very, let's say, stereotyped, for instance, you have to explain the methodology, you have to explain the theory, very often, clinical papers and papers in the health field, do not use a theory that's, that's what we face when we supervise medical students. They they're very surprised when we ask them for a theoretical background, and they have no clue what we mean. So, so these are our challenges, it's really a different, a different world a different way of looking at what is knowledge and what is information? And what are facts and how are they made. And so issues of diversity, we, they're also challenging because we run into the assumptions that these do not play a role, this whole idea of medicine as being universal, as being neutral, it speaks to everyone in the same way, and we're doing neutral research that we can generalize to the whole population. Once you start unpacking that, and you like, let's say dismantle that that argument. Yeah, we I've experienced that we run into a lot of resistance, also from reviewers and editors. And so it's, it's really looking for a good place for your paper, I would say so we need journals like yours, like this one, we need them to, to be able to explore the thinking about these issues more and have a avid discussion with other researchers.
Maybe to add to that, I guess a fundamental issue or difficulty with empirical ethics is how to not fall into the ace or trap. So how to if we have empirical data, and then make a non normative conclusion without kind of having a bridging way? How do we do it? And I guess, I would not consider our piece to be a fundamental empirical bioethics study. But what we did show is that by using empirical data is that some ethical procedures within research ethics might not do what we hoped they do or what we think they do. And that's can be I think that's a very valuable, valuable contribution, such empirical work and bacon due to bioethics.
I'm so we're quickly coming to the end of our time here. I wondered if there's any sort of takeaway that you hope people will glean from your paper? And actually, I wonder, based on the conversation we've been having, if there are different takeaways for different people?
Definitely some takeaways. I guess, what we said in the beginning that fixing the numbers is not enough to ensure it's a social justice within research ethics, we need to critically examine the research environments and that we're working with, but maybe more concrete. On a practical level, though, so this is maybe for researchers and members of research ethics committees. So I guess the question Who classifies risks and on what grounds is an important question and I guess this question needs different perspectives. So to need to diversify our teams we need to diversify these committees in order to be able to see these different When types of risks and understand it properly, another way to potentially improve or kind of get a more comprehensive image of what risk entails is to collaborate with participants from the start on. So that you include these people at the beginning of the before the question the you before the moment that you've already raised a question. So that you can see kind of make room for these those who are now silence. Yeah. And then maybe for a more theoretical level. So I guess this would be for like the philosophers orbited the ethics by ethicist. We hope that our paper shows how an intersectional theory can kind of contribute to exposing ethical challenges that remain obscured in bio ethical frameworks. Yeah. Is that does that answer your question?
Yes, it does. Petra, did you want to add anything?
I have. Actually, I have nothing to add. I think floor summarize it. fantastically. Excellent.
Well, thank you so much to both of you for speaking with me.
Thank you for having us.
Thank you for having us. And we're looking forward to the podcast and use it in education.
Wonderful. That's great. Thanks again. And thanks for listening to this episode of FAB gab. You can find the paper that we've discussed linked in this episode's notes along with the transcript of our discussion. FAB Gab is hosted and produced by me Kathryn MacKay. You can find out other episodes on Spotify, radio, public anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye
