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 Lida Sarafraz from the University of Utah to discuss her paper entitled understanding and correcting sex disparity in cardiovascular disease research, ethical and practical solutions. Hello, Lita.
Hello, thank you for having me.
Thank you for joining me. It's great to have you. So I wanted to mention right off the top that your paper was the winner of the Donchin and Holmes Emerging Scholar prize at the last feminist association of bioethics Congress. So congratulations.
Thank you.
You're welcome. And this is a prize that is given to the best paper from either PhD student or a very early career researcher. So within two years of submitting their PhD, so at what stage are you in your career?
I'm a PhD candidate in Philosophy at the University of Utah. And I'm in my fifth year.
Great. Good for you, and congrats on this win.
Thank you. You're welcome.
Did you see the prize? And you sort of aimed for it? Or did you have the paper already written and then this kind of came along your way, and you decided you would submit to it? Actually,
I had this paper earlier that I was really passionate about, then I wrote it, and I submit it to the conference. But later, I noticed that it was the one the best paper prize. So I would say I didn't aim for the prize. But I was really excited that there is a feminist bioethics conference. And I was really excited to be part of the community as submitted my paper. And I'm really glad that I also won the prize. So yeah.
Yeah absolutely. A little feather in the cap. So I wonder if you could give the listeners just the elevator pitch of this paper before we get into it?
Yes, so in this paper, I talk about the under representation of women in cardiovascular disease research is... also because the short version is CVD. I argue this is a moral aggregation problem. Moral aggregation is a term in Applied Ethics. And it means that a group of individuals contribute to the potential harm. For example, an individual acts of driving a car does not necessarily add to the problem of pollution in a city. However, if a large group of individuals arrive in the same day, they may contribute to the aggregation to moral aggregation problem of air pollution. So in the case of CVD research, I applied the same model. And I argued that because many individuals and institutions over a long period of time, have ignored and excluded female research participants from their CVD studies. Now they are facing a moral education problem there. And because of this moral application problem, or aggregation of male bias studies, sensitivity research, we have the lack sufficient data about humans, cardiovascular diseases, I can explain large, but I think this is like summary, a short summary of what I do in my paper.
Yeah, no, that's really great. And I wonder, is this a part of your broader research project? What motivated you to write this particular paper?
Oh, okay. I'm going to talk about the motivation I should go back to a few years earlier. I always like to interdisciplinary work. So a few years ago, I took a course in the Department of Anthropology at the University of Utah, and the topic of the class was sex and gender. And we were mostly talking about male body male hormones, and genetic issues later to them, like the Y chromosome disease and stuff like that. And our professor was a female professor, I went to her office hours, and I asked her really written a lot about male body as a woman, I'm interested to also learn about my body. And she said that, unfortunately, there is not that much work about female body in this area. And why don't you write about that? So I started to research about and I realized that it's a really big issue. Some female scholars are writing about that. And they are giving this awareness that there is the under representation of women in clinical trials and in different kinds of studies about diseases about female body. And it made me interested to do more research and write more papers about that. So finally, I had this opportunity to reverse that, Utah to take it graduate course advanced bioethics, which was taught by Dr. Bhatkin, a distinguished bioethicists and a cardiologist from the University of Utah. And they were teaching her ethics class together. So I got to sit thinking about the gender bias issue. Trials, I took that class, and I discussed this issue with my professors and find out like what's write this paper? And I was glad that I could submit it to the conference and publish it. So actually, the story goes back like 10 years ago, that's, I wrote this paper, and it was my motivation. And I still working on this topic, not necessarily CVD research, but like, in general, because writers in my current dissertation,
fantastic. So the spark started in some coursework, I love that. So you present four causes that you think provide reasons for why women are excluded from cardiovascular disease research. And that was really interesting to me to read. And I wondered if you could give a little bit of detail to the listeners about why the female body is excluded from this kind of research?
Yes, so I did a lot of research about with other scholars, especially in the area of medicine, I writing about this issue, and I could collect different data about that. And I categorize them the main, four main underlying reasons for women's underrepresentation in clinical trials. And in this case, CVD research. The first one was cost concerns. There are a variety of cost concerns, and one of them is that it's, it's more expensive if in clinical trials, they recruit both men and women. And they sometimes to just pick one gender group, and they usually pick men. Or also, it's explained in some areas that as men, rodents are cheaper document rodents, I still don't exactly why maybe because productive reasons. So customer service is one of them. And the other one is convenience, which is they just find it more convenient, because there is still this myth in some areas of medicine that female bodies more complicated because of different hormonal cycles. And they they think their male body is more simplistic, which there are so many studies that are disproven that idea. The other one is like pregnancy, I use the general category of pregnancy, but it was it means both potential and actual pregnant women. So we know that pregnant women are usually excluded from clinical trials because there is always the fear of harming the Peters. But at the same time, there are some women that are pregnant but they're equally productive ages. And researchers are still are not really motivated to do research on demanding reproductive ages, because there's always the possibility of them being pregnant. So they just avoid liability issues, ethical issues related to that. And the last underlying reason for women's underrepresentation in clinical trials and again, mostly in silico research I think is negligence, which is historic historically in the history of medicine, the male bodies always considered to be called and or body and when they are doing research on humans, they mostly mean the male body and unfortunately it's still in many areas the normalized body so they just simply neglect female body and they just considered as the other as not the normal typical human body. So I identified these four reasons for women's underrepresentation CVD research.
And why is it a problem that the female body is excluded from this research?
So, in my paper, I argue that since I call it aggregation problem aggregation problem is usually a is also aggregation aggregate of harm. In the case of CVD research, I'm mostly focused on epistemic harm which means when we don't have enough research about female body in CVD research, we suffer from lack of knowledge about cardiac disease in female body, which can also cause other hands. For example, the under under representation of the minute CVD research as the problem of lack of sufficient medical knowledgeable sex differences in cardiovascular disease and treatment. Like the effects of different medications are female by the event they are suffering from different kinds of cardiovascular disease. Also the epistemic harm is not merely limited limited to health practitioners, but also to women patients. The lack of awareness about the variations of symptoms also leads to women patients miss or delay their diagnosis, many men traumatic experience a classic symptom of chest pain, which is mostly common in men for CVD, and then they do not see cardiological help, and are different statistics that show that like more than 50% of the men, when they're suffering from cardiovascular diseases, they don't seek help, because it's not usually having the classic symptoms that we see men, but they are, they are usually presented as symptoms for chest pain, but they're actually mostly common in men. And that's been.
Yeah, I mean, I found that really interesting. I think I've, I remember seeing some sort of public service announcement about this a few years ago, but certainly, the story around what the signs of a heart attack are, is like, tightness in the chest or chest pain that radiates down your left arm. This is what everybody's told is, this is the universal sign that you're having a heart attack. But that's not the case for women.
Is it? Yeah, yeah, that's right. Yeah. This is like the classic like the stereotype that you also sometimes see it in movies that usually a middle aged man, he's a little bit overweight, is putting his hand on his chest and say that, Oh, I think I have a heart issue. Now. But actually, it's like the stereotype. And usually, women have different symptoms. And in some of these cardiovascular diseases, there is no symptom. And they just need to check. Check up frequently to lots of stuff.
Mm hmm. So I thought it was interesting that you frame this as an epistemic harm. There are clearly other harms that might accrue as well. But that this is mostly the main harm associated with leaving female bodies out of this research is, is a knowledge problem. We end up with a knowledge problem.
Yeah, I don't see epistemology and ethics as separate from each other. I think epistemological questions are also ethical questions. And I think when we know something, we have responsibility about that knowledge. And also, when we don't know something, there's also that an area of psychology called epistemology of ignorance, that if someone is not aware of something, if someone does not gain knowledge, that was one issue. We call it ignorance. But there is still this ethical responsibility for that person to figure out what but the knowledge are lacking. So they go and get and learn more about that. So I that's why I really focus on the epistemological harm part because I see the most on ethical issue that people need to take action and be responsible for learning more, and also educating other people.
Yeah, absolutely. So. So then that actually leads nicely into asking you about what some of the proposals are, because the latter part of your paper presents some options for how to address this. And I think you talk about kind of top down and bottom up approaches to solving this.
Yes, so to write this paper, I use Dr. Hutchinson, Katrina Hutchison's methodology, which she's an Australian philosopher and she that she did an amazing work discussing similar issue in gender bias in implant design and research. So she used this methodology and she said that there is gender bias in implant design and use and she's she saw it as a moral obligation problem. And her suggestion was that he can use two different types of approaches top down and bottom up. Top down mostly refers to like institutional lever level way of facing the problem and address in it. And the bottom up is mostly referring to individual level and personal level activities that people and activities can do to address an issue. So I use her methodology and in my paper after recognizing those four main categories of underlying reasons for women's underrepresentation in CVD research. At the end of my paper, I had some practical suggestions and for each of them For example, from cost concerns, I had some top down and bottom up suggestions, like, for example, subsidizing female animals for research. So researchers don't need to worry about the price of them. Or for the convenience part, one of my suggestions was that maybe we need to just educate researchers, that female body is not necessarily the most sophisticated body when during different types of research, there are different studies that are showing that female body is not as complicated as is assumed, and it's also a good model to do research on. So maybe we need to just this awareness to some researchers. Or, for example, for the negligence part, I have some suggestions like having some education and also some activist solutions. I think of my paper, I discuss the general issue and I talk about sexism in whole medical research and education system. I think also adding more women to medical sciences as both scientists and research subjects would be very helpful. There will still be obstacles if the rest of the medical system such as policymaker, journal editors, and etc, do not change at all sexes system must change in all aspects and not one or two aspects. We need more women in all the sectors and positions that are involved in medical research, such as scientists, research subjects, policymakers, to not editors, funding agencies and healthcare providers. Sometimes philosophers of science have argued that only difficult orality of views and diversity of perspectives can help the scientific community overcome his biases and epistemic communication limitations as much as possible. So I have some practical suggestion. And I think it can be good to start to change the system and make it more ethical for women.
Yeah, I think I really support that recommendation, I think it's really interesting to read about what you've written in this paper about the assumption of the complexity of the female body. And this being a reason why research isn't done. And it's part of the cost considerations, it sounds like as well. And it just is so lame, have a reason to not do research that includes females, because in the human population, males and females are produced about equally 50/50. So I know this goes back to some obvious math, but you've got 50% of the population that you've just decided is too hard. So we'll just gonna, we're just gonna set 50% of the population aside as a, as a too complex sort of organism, and assume that we can learn everything we need to know about that half from this other, more simplistic half. But both of those assumptions seem completely dubious to me.
Yes, also, let me tell you an interesting fact that currently in America, more than 50% of the population are women, as much as I know, it's like 51% of the population are women. So when it comes to numbers, women are not even minorities. So they're the majorities, but even in numbers, if you are the majority doesn't necessarily mean that you have the same power hierarchy as the group that are not as much as the group,
clearly. So did you have any particular challenges when you were writing this paper? I'm also curious, because you're, you're a philosopher, you're a philosophy PhD student. When you were doing the more empirical research, what was that like?
I think it's a really great question. First of all, I think my main challenge as a philosophy students was that there is lack of ethical and philosophical data about similar topics. And it makes it hard for new scholars like me, it was started from scratch. And so I think the last few years and medical scientists are writing about this issue. And I think when it comes to empirical data, I really didn't face so many challenges, especially because I it was my paper in 2019. At that time, there was a paper written by Gronk and his colleagues, and they released the comprehensive work, empirical work in Syria, but I was looking for philosophy papers and books about this issue. And I was lucky that Dr. Hutchinson's paper was published in stars and mighty an executive. I was writing this paper so I could finally use her methodology and also in my paper a little bit I criticized her as a When people ask first though it's tradition. We love each other's books. But speaking it's important to emphasize that hey, yeah, I'm different. Here's what I think is different than your view. But I really appreciate that her work. And I think she made it easier for me to write this paper and I hope also my paper makes it easier for other scholars to write about similar topics. And I hope we use different methodologies different plausible analyzes, I think this is a topic that has a lot of potentials in different areas of philosophy like bioethics from epistemology, feminist philosophy of science, applied ethics. And I think many other areas have discovered it to use this one as a case studies. And I hope the future will be better.
So I guess we're coming to the end of our time here. And I wonder if there's any sort of one or two main takeaways that you hope that readers will take from your paper? And maybe I mean, I really like what you've just said about how you want this kind of work to influence philosophical thinking in lots of different realms. Maybe that's part of it, but what else would you hope that people will take away from your paper?
Yeah, I think it's exactly my main points. My main points is awareness. We all should be aware of humans underrepresentation in clinical trials can depending on our profession, like what are our jobs or be studying universities, we can do something different about it in my paper. So just to address this issue, not only by encouraging the inclusion of inner subjects, but also female researchers, and studies show that the increased number of researchers has positive impacts on paying attention to gender and sex analysis in clinical trials. So I'm so as I mentioned earlier, I'm hoping people and especially if women in other areas of the profession that I mostly talked about, and like policymakers, you'll notice numerous subjects, scientists, funding agencies, healthcare providers, all of them, be aware of it and also us as philosophers.
Wonderful. Thank you so much, Lida.
Thank you very much.
It's been great to talk to you. Thanks so much for listening to this episode of FAB gab. You can find leaders paper linked in this episode's notes along with the transcript. Fab gab is hosted by me Kathryn Mackay and produced by Madeline Goldberger. You can find our other episodes on Spotify, radio, public anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye
