Welcome to Research Ethics Reimagined, a podcast created by Public Responsibility in Medicine and Research, or PRIM&R. Here, we talk with scientists, researchers, bioethicists, and some of the leading minds exploring the new front iers of science. Join us to examine research ethics in the twenty first century and learn why it matters to you.
PRIM&R: Hanna Holman:Welcome back to Research Ethics Reimagined. I'm your host, Hannah Holman.
PRIM&R: Claire Carter:And I'm Claire Carter. Today, we're thrilled to be joined by two extraordinary guests whose work sits at the forefront of equity, advocacy, and ethical research.
PRIM&R: Hanna Holman:First, have Dr. Doretha Walker, a social impact and advocacy specialist with expertise in public management, leadership, and the lived experiences of underrepresented groups in policymaking. Doctor. Walker's work bridges the intersection of diversity, equity, and inclusion with scientific rigor, and she's widely recognized for her scholarly publications, conference presentations, and thought leadership on topics like implicit bias, cultural competency, and fostering equity in research communities.
PRIM&R: Claire Carter:We're also joined by Dr. Brenda Jamerson, currently an adjunct assistant professor in the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine, and previously Associate Professor of Clinical Research at Campbell University College of Pharmacy. Doctor. Jamerson completed her postdoctoral fellowship in drug development at University of North Carolina, and has published her work in the fields of pharmacogenetics and drug development. Her current research interests and expertise are in the areas of promoting health and research literacy research ethics and most recently, the use of artificial intelligence to assist patients with accessing health research, and clinical trials.
PRIM&R: Hanna Holman:In this episode, we'll explore the evolution of women's health research since the NIH Revitalization Act of 1993. We'll discuss how women's health understanding has evolved, key advancements, and the impact of the lack of diversity in clinical trials. Our guests will also highlight critical gaps in women's health research and how we can address them. Doctor. Walker, Doctor.
PRIM&R: Hanna Holman:Jamieson, welcome to the podcast. Thank you so much for being with us today. And let's get into our first question. It wasn't until 1993 that President Bill Clinton signed the NIH Revitalization Act requiring the inclusion of women and minorities in all NIH funded clinical research. Since then, how have you seen the understanding of women's health evolve?
PRIM&R: Hanna Holman:What key advancements or shifts stand out for you?
Doretha Walker:I'll start. I think for me, and I'm probably older than all of you, that the advancements in breast cancer detection and the treatment, because I remember getting my first mammogram to getting my mammograms now and how it's just, I'm not gonna say comfortable, but it's a lot more comfortable. Then also now being able to see the scans and actually having the conversation around it. Because before when I would go in, you'd get it and you'd be like, Yeah, we'll just call you if there's a problem. But now being able to have the conversation with people who actually understand what's happening and also understand the comfort level because one of my friends died from breast cancer.
Doretha Walker:So my very first mammogram after her was like highly charged because I was going in there and even though I didn't think I had it, but just the fact that she had died from it, Then going in there and then just having someone actually recognize that there was something going on and actually having the conversation. And that didn't happen to me before. So now there's more of a conversation. There's more, you actually get to see the scans, the three d mammograms, now they're like, okay, we're going to warm this up so it's not so cold, the whole process. So for me, that's what stands out first and foremost.
Brenda Jamerson:I'm glad you brought that up about breast cancer and breast cancer research has just exploded since 1993. I mean, some of the big issues that we've seen happen with breast cancer research has been in, you know, pharmacogenetics and genetics where I'm sure everyone on the call has heard of BRCA gene. You guys have heard of the fact that now we've got immunotherapies for breast cancer. So individuals that were previously receiving what would have been a death sentence for breast cancer, Now through genetic research, we actually have not just palliative care, we have curative care for individuals. But I would just highlight, you know, it's my background as a drug development pharmacist and someone who's interested in this whole genetic field that we have seen in people go from almost no one who's a woman, like less than twenty percent being in clinical trials, to now the number's near fifty percent.
Brenda Jamerson:So that's kind of a big evolution and a lot of the breakthroughs that have been highlighted are all because of that.
Doretha Walker:And also for me, the menopause and hormone therapy conversation, I remember when I had my period, I just got a book. I was like, read about it. And now that I'm in menopause, just having the conversation, because again, not really understanding what was happening and all of a sudden my body's doing things that I didn't even understand and just being able to have the conversation. And now there's, I mean, Halle Berry's even championed menopause and she's got this whole initiative. So I'm really happy that we're having the conversation, not just in private spheres, but also on television.
Doretha Walker:You're seeing more people talking about what's happening after you reach a certain age on TV. So it's not just that taboo subject that you just get the book or you're like in the back room with your friends trying to figure out what happens.
Brenda Jamerson:Yeah, I certainly hope, you know, that this area, like you were saying, like people are more comfortable with the conversation. So that's a really important thing, and I think as more research gets done, even in post menopausal women, you know, that I think what had previously happened is people didn't even understand the benefits of hormonal therapy in menopause until we actually just started studying that. And so that allows people like the everyday person, right, to say, okay, I now understand what the information is for the risks. I know how this can help me with my symptoms, whether it be hot flashes or something else. And let individuals have that information for themselves and be able to make those determinations on how that would affect either their sexual life or the symptoms they have going from day to day.
Brenda Jamerson:So getting into the, not just into the reproductive years, but in the menopausal years is important for the research altogether.
Doretha Walker:Well, now we're having a conversation with our friends and we're going, okay, this is working for my friend over here. So when I go to my doctor, I can inquire and say, okay, would this work for me? So now I'm empowered because there's more information out there. And I'm not just going websites out there that may not have credible information. There are avenues where I can go and also be empowered.
Doretha Walker:And like, what language do I use when I'm asking the question? And then also, what do I do if my doctor pushes back? So that's the other thing too. We're talking about we need to advocate for ourselves, but what happens when your doctor's like, Yeah, no, we're going to do this. And you're like, But why?
Doretha Walker:Just being empowered and not feeling that you have to take whatever's offered you. Because before it's like, okay, this is all there is. You just go take it and run with it. But now you can say, well, I don't know. I've heard this, I've read these, I've read the research studies of whatever homework that you've done to go on there and challenge.
Doretha Walker:And not coming off challenging your doctor, but just having that dialogue saying, This is my body. I need to be involved in the discussion on how we move forward. And I think that's really important. And I think we've come a long way in providing the tools to do that.
Brenda Jamerson:I also have seen since this has happened and the research has exploded with just being able to look at things like postpartum depression, that maybe would be, I mean, like a taboo thing that no one's talking about. And so being able to do research in the area of the reproductive years as well, you know, we've seen some, just recently, some drugs being approved for that area. So I think we need to continue on and helping our NIH research scientists too. I think that was kind of where that revitalization act came from. Hannah, as you mentioned, continue to push the envelope.
Brenda Jamerson:We haven't arrived, I think is what we're both saying. We need to continue to have these research conversations so that people know where people want the research to be done.
Doretha Walker:And take away the shame There's no shame in saying, I'm feeling a little different. Remember a long time ago, there was this book, It's Okay Not to Be Okay. I think we need to embrace that saying, It's Okay Not to Be Okay. There are resources out there. It's Okay Not to Be Okay.
Doretha Walker:You shouldn't be not Okay forever, but It's Okay Not to Be Okay. And then go and get the resources. But again, we have to provide those resources, those credible resources, those viable resources, those really good resources across the spectrum, because as we know there are certain people that don't have access to good healthcare, let alone mental healthcare. We just need to keep moving forward and we need to be good stewards of the information and make sure that we're using our platforms, whatever they are, to make sure that people in our circles have that information. Because once you put it in your circles, it's going to bleed out.
Doretha Walker:We just need to make sure that all of us have good information and access to good information. And then when you ask the question to make sure the person's actually listening to you, Cause that's the other thing, you're asking questions and nobody's listening to you because that's not how it's normally done. I believe in honoring the lived experiences of others. We just have to make sure that when we're asking the questions, that we're listening to the answers and then we're helping come up with better solutions. And then the last one is about fertility and reproductive health.
Doretha Walker:I'm glad that there's research actually being done on that to make sure that those who want to have children are given the best options so that they can have children. Those who choose to have children need to have the best options and the best care. And we know that Black women die three times more when they're giving birth than white women. We need to delve into that. I know there's a lot of research being done on that, but I think we need to come up with better solutions so that every person who decides to have a child that's going through maternity and has a safe birth and that their children are provided with the optimum care so that no child dies and no woman dies given childbirth.
Brenda Jamerson:Yeah, that is, that's so true, Dorothea. I mean, in terms of when you talk about health disparities among women, we know maternal health and giving having safe childbirth is one of the big areas where we still see a lot of disparities. So, you know, how that's a public health effort. That's kind of Mhmm. Just all all boots on the ground kind of effort to get the word out on how people can be more safely helped.
Brenda Jamerson:And from the research, know what some of those are and what people can do, you know, folic acid, for example, the nutrition elements during pregnancy. And so the research over the past twenty years has actually given us those answers. And I think through public health efforts where we can get the word out to individuals and access to care so that they can actually see providers who can give them that information.
Doretha Walker:Absolutely. Again, it's all about the information and how is the information getting out? Because we know the digital divide is wide and it's just gonna get wider. So we just have to figure out how do we get the information out to people. And then once you get the information out, how do you get them into spaces, safe spaces, where they're talking about their issues, whether they're trying to get pregnant or they are And again, it's all about that safe space because we all have stories where people go into a medical establishment and get turned away or get talked down to and then they leave and then something horrific happens.
Doretha Walker:So again, we have to get the information out there, but we also have to create those safe spaces for people to go.
PRIM&R: Claire Carter:Absolutely. Let's move into our next question. So how does the lack of diversity in clinical trials impact the advancement of women's health?
Doretha Walker:I'm gonna let Brenda start with that one.
Brenda Jamerson:We'll start on the plus side. The plus side is, when I think of diversity, I think of men, women. I think of all the categories that individuals that are African American, Caucasian, ethnicity by Hispanic women, etcetera. So on the plus side, we have seen that improvement in women, as I mentioned now up to about fifty percent, but where the lack of diversity still is existing for women is under diagnosed in terms of knowing they have cardiovascular disease. And still, they're not in cardiovascular clinical trials.
Brenda Jamerson:So that lack of diversity related to women being in cardiovascular trials, because the presumption or the assumption that more men get heart attacks or myocardial infarctions than men is actually a myth. More women are dying from a cardiovascular disease than even cancer. So we need to pay attention to the way that women present differently when they have cardiovascular disease than men. You know, they might not have the left arm radiating pain. They just might have anxiety issues.
Brenda Jamerson:So that lack of diversity is affecting the way that we can understand and treat women who have cardiovascular disease. The second area that's been in the news more recently are underrepresented minorities in clinical trials. We need to have everybody getting access to studies across the board because particularly for cancer treatments, the access to immunotherapies is huge, could make a huge difference in the way people can eventually perhaps live longer. So research in these areas is not just investigative studies, it could be actually providing health benefit for individuals who have access to research and studies. And again, we're creating those safe spaces for people to enter into, because I think the safer the space is, the more welcoming or you feel like, okay, I
Doretha Walker:can do this. They're not going to look down on me. They're not going to talk down on me. They're not going to do all those X, Y, Z things that we hear that are happening to historically excluded populations. So again, on the side of the historically the populations, it's good.
Doretha Walker:But also, I think on the side of the researcher, it's also good because you get firsthand experience of being with those populations. And I think that's what's going to dispel the myths and the stereotypes and all the other things that happen. Yeah, absolutely. Would you dose a woman differently than a man?
Brenda Jamerson:Well, I think, yeah, sex is a biological variable, which is women actually metabolizing drugs differently than men. That's a major thing that we have to pay attention to when we do clinical studies to make sure we get the dosing right in men versus women. We need to understand whether or not drugs have differences in women, basically because of hormones, you know, hormonal effects, because they're going to affect drug disposition. Of course, body weight, the amount of fat one has on their body, and then the way the liver acts, you know, for those reasons, your dosing could be different. Item we were just chatting about a second ago, what the NIH has done lately, is that making sure that researchers categorize people by sex so that we can say for sure, we know what happened with each sex group, what happened with each weight group differently.
Brenda Jamerson:And without that diversity, without knowing that, you could kind of only find that out after the drug's been approved and now you've dosed millions of people and you have to sort of reel everything back because you found out something you didn't know ahead of time.
PRIM&R: Hanna Holman:Absolutely. More diverse research is better research. You for your answer on that question. Just going forward a little bit, women's health has historically been under researched in many areas. We do have the 1993 Revitalization Act and we have the 2,001 NIH policy guidelines on inclusion of women and minorities in clinical research.
PRIM&R: Hanna Holman:But what do you still see as the most critical gaps in women's health research today? And do you have any tactics you would recommend to address those gaps now?
Brenda Jamerson:I'd say one of the biggest gaps that we see, I just mentioned cardiovascular disease is a big gap. And you mentioned those two policies that came out, Hannah. Another one that's now sort of in the mainstream understanding of how we can better utilize it to make sure women get well researched is the twenty sixteen sex is a biological variable act, rulemaking that actually said, researchers have to pay attention to this and categorize everything as I've mentioned. And I think one area that's still not very well researched is in mental health. So, you know, there's a lot of differences in the prevalence of depression that happens in women versus men.
Brenda Jamerson:As I just mentioned, postpartum a second ago, that happens in women versus men. And so understanding why that's the case and why are we seeing differences in men versus women is an issue.
Doretha Walker:So when people become pregnant, they're very rarely involved in any kind of clinical trials. And on the one hand, you could sort of understand that because you don't know what the impact is going to be on the fetus. But then also, that leaves out women who have other health issues who are pregnant not getting the care that they need. So we need to stop treating pregnant people as just hosts of babies, but also holistically treat them. So there's a movement to include more pregnant people in clinical trials.
Doretha Walker:And again, I know you have to be very careful on doing that because you don't want to intentionally harm anybody, But there has to be the way to do it so that a woman doesn't necessarily always have to stop her care, her well-being. I keep saying woman, I mean a person stops the care needed to make life because that person happens to be pregnant. The tactic for that has to be just slowly introducing pregnant people into clinical research, one step at a time. And perhaps this is like the third phase after you've you've done your research on all different other people who are not pregnant and then slowly integrating pregnant people into the research. But I think it's unfortunate that, because I've had friends who were pregnant and said, Okay, I've got to get off this medication that's for my X, Y, or Z, because now that I'm pregnant and we don't know what the impact is going to be on my baby.
Doretha Walker:And I understand that, but people don't stop being people just because they become pregnant.
Brenda Jamerson:I think one of the ethical issues in terms of that are we wanna give people their choice. We're not sort of saying, Hey, we'll make a choice for you on whether or not you can be in the clinical trial or not. And in terms of pregnant women being in a study, we know that there's a pathway to understand the safety of how that can affect a fetus. Does it cross the placental barrier? All those kinds of things.
Brenda Jamerson:And once we've sort of cleared certain hurdles on, does it cross the placental barrier? Will it show up in breast milk? Do we have enough data now to know how this is going to affect someone who could be pregnant? Then helping that population that they now can get the information for themselves and make some choices on whether they want to be in studies. But then I also want to address the question about how can we change the picture of how people can be involved in studies that maybe had not been.
Brenda Jamerson:And you mentioned, Dorotha, something I thought was really key, is on research investigator side. Maybe they're the doorkeeper that keeps people out of research. And if once their attitudes change, maybe then things can change, because we know that as many people that want to be in studies are never asked to be in studies. Or maybe providers feel like they could say no without even asking the person. So I think what I'm kind of a proponent of now is using artificial intelligence to get information into plain language so that it's not only the gatekeepers that have the information as one solution to this conundrum, is that also people can have the information themselves because they have it in a way they can understand it.
Brenda Jamerson:And then they go to their research investigator, their doctor, whomever is doing the studies, doing the research and saying, I heard about this, this is something that interests me, you know, I'd to enroll. So I think changing the power, the power play, which is what I've heard about quite a bit, where now the power also resides in the hands of the patients, then that can actually change who gets into studies.
Doretha Walker:And I think that's why it's important to have platforms that provide credible information, not all this fear mongering stuff, and that we were able to point them to those credible websites. Because if you, you can come up with all kinds of I remember one time I had a headache or something and I went in there and I was like, Oh no, now I need a lobotomy or whatever, because it was like all this stuff. Like my symptoms could be 2,500 different things. And I'm not that kind of doctor. So we just need to make sure that we provide avenues of credible information, like you said, in plain language, in spaces where people go, like community centers or even supermarkets.
Doretha Walker:So when you're standing, when you're at checking out, surely we can come up with something that we can put, and maybe supermarket's not the best place, but put where people just chance, you just happen to read it at a bus stop or whatever, and be more intentional where we put the information where a lot of people are going to walk by it and actually see it and even have questions whether or not the study is for you or not, you can have the conversation and maybe it's for one of your friends. We just need to make sure that we can point people to avenues that have credible information. And also if it's provided by people who look like them or who share a language, that's important too. Cause it goes back to the whole, you know, we're talking about the investigator and the whole power dynamics, whether it's intentional or not, there's that hierarchy of who's better in a white coat. Like, am I going to go to you?
Doretha Walker:Am I going to trust you? But if you have someone that looks like them, speaks the language, and maybe even age wise, that's gonna make a big difference.
Brenda Jamerson:Yeah, I love the idea. I was at a little meeting yesterday and they were bringing up the use of doulas for maternal care, and I just love that idea of people being out in the community who are, like you said, part of the community, that if you're Latina, you can have someone who can help culturally and using your language speak with you about the best thing to do while you're going through your pregnancy. So all those things, I think we need to bring every single armament to the fight so that we can make sure people get the word, whether it's social media, because that's where people are. So having trusted sources on social media in the future are gonna be important as well.
Doretha Walker:And also about changing how do you do your research? So I just did a presentation last week on different ways of doing research. And one of them was like, you give your participants a camera and let them chart what's happening to them every day. Or you shadow someone, you go with them when they go to their provider so you can see how it's difficult to fill out the forms or whatever's happening. So there's different ways to do the research so that it's not so scary and so foreign.
Doretha Walker:It's like, okay, I'm honoring your story, but how do I tell your So let me follow you and let you guide me on the best way to do it. And granted, like in clinical research, yes, you definitely have to follow certain guidelines. But how you approach the person and get to the information, there's a variety of ways that you can do You just have to make sure that you document it. We're talking about informed consent. I mean, there's so many different levels with that.
Doretha Walker:So there's so many different ways to approach people to make sure that you get a diverse group of people in there. You just might have to change the way that you're delivering it.
Brenda Jamerson:You know what, I'm glad you brought that up because it reminded me of something I think is gonna be a game changer in this area, and that is decentralized clinical trials. There's so much that people can You can even have ways on your smartphone to have telehealth visits where you don't have to go to see that provider anymore to be in a study, or even sending you a kit so you can send in your samples through the mail. So I think those ways make it more convenient to people because a lot of the people we want to have involved in research, they cannot get off work during a nine to five time when the offices are open. So having different strategies like decentralized studies so that you can do it in your home and do the home visits and use your smartwatch and use your smartphone to show people what you're doing is 100% a great idea. We need to do more of that.
PRIM&R: Claire Carter:You guys are making such wonderful points. And that brings us into our next question. So
Doretha Walker:how can research
PRIM&R: Claire Carter:and healthcare be more inclusive of factors like gender, race, socioeconomic status, and LGBTQ plus health? And do you think this effort will be more difficult in light of recent federal changes?
Doretha Walker:I think it's gonna be more difficult in light of federal changes. I mean, we're already seeing it now with cutting funding to studies, but I still think that we have to continue moving on and trying to find alternative ways to fund. And I know that's like pie in the sky, but we can't stop. We can't stop. I think it goes back to what we were saying before, more inclusive enrollment, like how do you do that?
Doretha Walker:Like where are you advertising for your study? If it's only on campus and that's what you're going to get, I mean, do you do it in a grocery store? Maybe not, but depending on what it is. And I also think the researchers, we need to have diverse researchers because if they're always the same people and they look the same and they're not representative of the community that you want to research, you can have a hard time getting it. So when the COVID vaccine came out, I was talking to my brother because my brother hadn't taken it, but his job required him to do it.
Doretha Walker:And so we had the conversation and like, okay, which one do you do? And then we chose Moderna because they actively sought out African American and people of color to be there in their research study. And that was publicized. I'm not saying the others didn't, but we heard about Moderna. So again, putting it out there, when drugs are approved or devices or whatever, like who were the people that were part of the research study?
Doretha Walker:So if you hear that, okay, there's a lot of Latinos that were in it or a lot of indigenous people, it kind of gives you, okay, this is going to be okay. I feel safer doing it. But again, it goes back to creating those safe spaces so that when I say I wanna be in a clinical trial, when I show up, I'm not talked down to, I'm not pushed aside. We have to create those safe spaces.
Brenda Jamerson:Yeah, and also I think related to making sure it's more inclusive in light of recent federal changes as was asked. I think research at the academic institution, I think that's been in the news. That's going to be a lot tighter because those funding budgets are not quite the same. But I'm going to go back to my original thought here, which is that if you get the research ideas out to the people, in many ways, a lot of people in underrepresented communities were not necessarily going to the Yales and the Harvard's for research anyway. They need to do it in the community.
Brenda Jamerson:And I think using maybe this opportunity to make a pivot, to involve more community centers in research, right? They've been left out. There is a whole federally qualified health center network that is in poor and underserved communities, low SES communities around The United States. Involve them more in research because they are right there in the neighborhood. So I think we need to start thinking more creatively.
Brenda Jamerson:Yes, maybe the whole academic research paradigm is not going to ever be the same, but we can still continue on to involve people that need to be in studies by going to where they are, not asking them to come to where the research is.
Doretha Walker:And also involving them on the front end, going into communities, let them help you design the research, because then you get that buy in because they were part of it. And again, I don't mean having someone do some nuclear biology when that's not their field, but what I mean is just saying, okay, this is what we want to study. How do you suggest we go about doing it? What questions do we need to ask? Or going in there and finding out like, what is your main health problem?
Doretha Walker:And let's come up with a research so that we can tackle that. Cause when you get the community buy in, then you're going get more people that are going to be in the research because they're going to say, Oh yeah, I know Doctor. So and so. We work together on the research project. And that's advertisement too.
Doretha Walker:Cause you know, word-of-mouth, I mean, it's you know, you just think about it. If you wanna go to a restaurant, you look at the reviews. So again, same with research. We can look at the word-of-mouth, like who participated in this research? What you know, what percentage of of whomever?
Doretha Walker:Who was involved in it? So on a lot of IRB applications I see academic ones, it's like, was the community involved in this research? And if yes, how? And if not, why not? So again, you're involving the community because if they're buying in it, they're going to tell their friends in the community.
Doretha Walker:And that's when you're going to get the recruitment that you need. But you have to be upfront. It can't be this whole cloak and dagger thing. They just need to be involved in all aspects of the research process from the design to the implementation. And again, to the follow-up, like I say, return the results from where it was harvested.
Doretha Walker:Again, once you finish the research, go back and say, this is what happened. Don't just write about it in some medical journal that the people who are involved in the research never get to see.
Brenda Jamerson:That last point about getting the research information back to people actually has a circular effect, right? Like if you've been in a study and you never have seen the research results of the studies, and a lot of people have that experience, what does that do to the next time you might be asked to be in a study? So the issue has been that information resides in some peer reviewed journal somewhere, and it doesn't necessarily reside with people. So using, as I mentioned before, using our tools, which in this case is now our AI, sometimes we can actually help to put that information into plain language, so people can get that information, and then involving them on the front end. Like I think women might have different questions, especially they might want to know if they're going to be in a study, if they're involved from the front end, they might say, well, how does this affect me during different phases of my menstrual cycle?
Brenda Jamerson:You know, maybe that should be a question asked of the research. So those kinds of questions, because it's primarily been driven by male investigators, they might not think to even ask a question like that. So that involving people to make sure it's all inclusive from the front end to the back, I think is, we just need to make sure we keep pushing that narrative because it's so easy to sometimes forget it.
Doretha Walker:Yeah, because it's hard work. It's hard involving the community. You're getting the pushback and then they're asking you questions that you never even thought about because that's not where your mind was. And I think about too, when you're studying, and I always said you research with people, not on them, like when you're in indigenous communities and you're violating some kind of cultural norm and you don't know it because you don't have that guide with you to say, okay, no, we don't do things that way. You have to ask the elder first and the elder has you know, whatever the protocol has to be.
Doretha Walker:You just have to make sure that you're following it. And if you don't, you're not going to get that diverse group of people. So again, it's like changing that mindset of creating optimal research. And optimal means we have to have different kinds of people so that we can create the best research, which is going to put out the best product that's going to benefit everybody.
PRIM&R: Hanna Holman:I love what you said about these federal changes being an opportunity too. It's definitely a loss, but it's also an opportunity to move more into the community. And if we're doing research on a more local level, it's just going to become more diverse because of the people that live in, small communities, rural communities. I love that.
Doretha Walker:It seems like it creates more value to the people who you're trying to better their lives anyway.
PRIM&R: Hanna Holman:Absolutely. And when research is done on a federal level, people can't always see the way that it impacts them individually. Yeah. No, I love that. That was great.
PRIM&R: Hanna Holman:We do have, again, a lot of federal changes going on in a recent executive order, which is 14168, defending women from gender ideology extremism and restoring biological truth to the federal government. This executive order includes changes to sex based definitions. And I wanted to ask both of you, how do you think these changes will impact gender specific care, if at all?
Doretha Walker:I think this erases a segment of people. And when you start erasing one segment of people, it becomes so easy to erase other segments of people. So I think that this is going to be problematic. And then I also wonder about insurance coverage. So there are drugs that are used to support transitioning from male to female, female to male, or that are also used in cisgender people need that medication.
Doretha Walker:So now I'm wondering if insurance companies are going to say, Nope, you can't use that because it's in support of this, even though that's not what it's going to be used for. So I think it's going to have far reaching implications other than just harming a segment of people. It's gonna harm other people as well.
Brenda Jamerson:Well, yeah, it seemed to me it was sort of saying almost similar kinds of things to the, as I mentioned, the sex as a biological variant, which came out of NIH research in 2016. Know sex is women born with an XX chromosome. And based on that, you have different hormonal and physiological ways that you differ from people born with an XY chromosome. So this particular executive order is sort of now talking about gender, which is different than biological sex. And talking about gender, it would, as Dorita said, the one percent or so of people that would be affected by being XY, but then also now have been involved in gender based research as transgenders, they would be affected.
Brenda Jamerson:The ninety nine percent plus people that has been the research on the women's, NIH women's sex as a biological variant would not be affected by this particular executive order. That's
Doretha Walker:where
Brenda Jamerson:I see the impact being,
Doretha Walker:is we would lose They will be affected because there's drugs that are used in support of transitioning, and cisgender people use those drugs for something different. And if the whole gender affirming care, if any drug falls under that, insurance is gonna look at it a lot harder whether or not it's being used in support of somebody transitioning or not. It could be used for something else. My fear is that the insurance is going say, Oh, no, it's on one of these drugs on this list, so you can't have it. So I think we all are going to be affected, or those of us who need drug.
Doretha Walker:I think this is going to affect everybody. I think it's going to impact all of us.
Brenda Jamerson:Well, of course, say never. The drugs like the estrogen, testosterone, progesterone, Lupron, all those drugs have been on the market and available, you know, before they were used for the gender affirming care. So, like I said, never say never, that those drugs being available to people that need them outside of that, they've already been available for people outside of that. But I take your point that you never know in our crazy climate that we're in right now where things go. But my point is just that those drugs have been available prior and putting on my pharmacy hat, I don't see for the use case or the uses that they've been prescribed for previously that they would be banned.
Doretha Walker:I hope you're right. I hope you're right, but I just don't, I don't think so, but I hope you're right. I'm gonna be optimistic, and since she's the pharmacist, I'm gonna say, I hope you're right, but based on what I'm seeing already, I don't think so.
PRIM&R: Claire Carter:Well, thank you so much. Do you want to end with one final question on an up note? What gives you hope about the future of women's health?
Doretha Walker:That we're having conversations. We're not like in the back room talking about menopause or talking about infertility. We're actually having conversations. And now you can go and you can question your doctor and you can get second opinions. So you can shop around, you can actually find what's best for your situation.
Doretha Walker:And it's not a one size fits all.
Brenda Jamerson:Yeah, I have a lot of hope for when I've seen what we've done so far or seen in the research community and clinical community, these great breakthroughs that have happened in cancer research with immunotherapies curing cancer and cardiovascular disease where women are now being included in a way they hadn't before. And when I see mental health now being on the radar screen for people to evaluate it, we didn't talk about the fact that women have a lot more autoimmune diseases like lupus and different inflammatory conditions. And the fact that you now see a lot of research being put into that money's being put into those research areas now. So I have hope that that's gonna continue the trajectory because women make up more than 50% of the population, a little bit over 50% of the population. And so as our needs are driving the research agenda, and we're front and foremost in terms of how that carries over to even men who need some of these treatments as well.
Brenda Jamerson:What happens with us will happen to and help change the way of the entire world. We'll have better cures and better treatment.
PRIM&R: Claire Carter:Oh, wonderful. Well, was such a great conversation. I think this is a great place to wrap up. Doctor. Walker and Doctor.
PRIM&R: Claire Carter:Jamerson, thank you both so much for joining us today. The insight you've shared, along with the dedication and the expertise that you bring to this work is truly impactful. And I know our listeners will leave with a greater understanding of the importance of advancing research and innovation in women's health.
Doretha Walker:Thank you. And thank you for bringing Brenda and us and me together.
Brenda Jamerson:Thank you. Thank you,
Doretha Walker:Claire. Thank you.
Brenda Jamerson:Thank you
PRIM&R: Hanna Holman:guys so much.
Brenda Jamerson:It's been great. We appreciate you.
PRIM&R:Thank you for listening to Research Ethics Reimagined, a podcast created by Primer and produced by Syntax in Motion. Please subscribe and share with your friends and colleagues. To learn how to become a member of Primer, please visit us at www.primer.org. Be sure to join us next month as we continue our conversation with scientists, researchers, bioethicists, some of the leading minds exploring new frontiers of science.