“Research By Us And For Us”: How Medical Research Can Better Serve Trans Communities
Trans medical care isn’t new or experimental, and study after study has shown that transition-related procedures—such as hormone therapies and surgeries—are incredibly safe and effective. But most long-term studies on trans health focus on the first few years after transitioning, leaving unanswered questions about the years after.
Similar to members of other marginalized groups, trans people have long been treated like “case studies,” rather than potential experts when it comes to scientific research. So while researchers have studied trans bodies for decades, they haven’t always asked trans people what they need to know about their own bodies, such as: If I’m pursuing medical transition, how will my bone density change after years of taking estrogen? If I take testosterone, will I also need to get a hysterectomy? How will my hormonal and surgical options affect my fertility?
Now, a new wave of medical research—led by trans medical experts themselves—is trying to fill in those blanks and address the needs of trans communities.
Guest host Maddie Sofia speaks with Dr. Asa Radix, the senior director of research and education at Callen-Lorde Community Health Center, and Dallas Ducar, nurse practitioner and founding CEO of Transhealth Northampton. They talk about the state of research on trans health, and how studies can better address the needs of the trans and gender diverse communities.
Cassius Adair consulted on this segment. Thank you to Tuck Woodstock, host of the podcast “Gender Reveal,” and Riley MacLeod for the idea of this segment.
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Dr. Asa Radix is the Senior Director of Research and Education at Callen-Lorde Community Health Center in New York, New York.
Dallas Ducar is CEO of Transhealth Northampton in Northampton, Massachusetts.
MADDIE SOFIA: This is Science Friday from WNYC Studios. I’m Maddie Sofia. Trans medical care isn’t new or experimental. Procedures like hormone therapies and surgeries have been proven safe and effective in study after study. But there’s still a lot we don’t know about how best care for trans people over the course of their entire lives. Like members of other marginalized groups, trans people have long been treated like case studies rather than potential experts when it comes to scientific research.
So while researchers have studied trans bodies for decades, they haven’t always asked trans people what they need to know about their own bodies. Like, if I’m pursuing medical transition, how will my hormonal and surgical options affect my fertility? Or if I take testosterone, is it a good idea to get a hysterectomy? But now a new wave of medical research led by trans medical experts themselves is trying to answer those questions.
To tell us more about the state of research on trans health and how studies can better address the needs of trans and gender-diverse communities are my guests Dr. Asa Radix, the senior director of research and education at Callen-Lorde Community Health Center, based in New York City, and Dallas Ducar, nurse practitioner and founding CEO of Transhealth Northampton, based in Northampton, Massachusetts. Welcome to Science Friday, y’all.
DALLAS DUCAR: Hey there.
ASA RADIX: Hi, Maddie. Hi, Dallas.
MADDIE SOFIA: OK, so I want to start with what we can confidently say that we know about medical transition, which can include Hormone Replacement Therapy, or HRT. Dallas, can you walk us through what we kind of know for sure?
DALLAS DUCAR: Sure. So we know that there is a large amount of research that has predominantly been studied in cisgender populations. And we’ve seen that hormone replacement therapy in that research has really no– at least immediate– deleterious consequences or bad effects. And we also know, in terms of puberty blockers, that those have been demonstrated for years in cisgender populations to also not have any deleterious or bad effects in puberty.
We also know that in the case of transgender individuals, that whether they’re hormones or blockers, that we see pretty robust psychological benefits for trans individuals– trans, gender-diverse, nonbinary individuals– who are affirmed in their gender. And that may be through hormones and blockers. That also may be through the prospect of social transition, too, using the right name, the right pronouns, being able to dress in the ways that they feel affirmed.
But a large amount of the, at least biomedical research, so much has been focused on cisgender populations. And only recently there’s an eye towards studying transgender populations.
MADDIE SOFIA: I know that there are still some open questions out there in this realm. But I think the better question, or the better thing to really focus on, is access, right? Because that is probably the largest issue and also plays into why we don’t know some of these things. Is that fair to say, Asa?
ASA RADIX: Yes, I think it is. I mean, the biggest concern about trans health care or people working in trans health is that trans people really don’t have access to medical providers for any type of care. It’s not just about access to hormones. It’s access to primary care. It’s access to cancer screening. It’s access to imaging studies.
Providers actively discriminate against trans and gender-diverse people, from getting into the clinics and not being able to actually register appropriately using your name, not being able to let people know about your pronouns. The issue of hormones, no hormones, surgery– not every trans person wants to use hormones or wants to have certain surgeries. But everyone needs health care. I’m a medical provider, and I don’t feel safe getting medical care.
MADDIE SOFIA: Yeah.
ASA RADIX: Right? So what does that say about the system?
DALLAS DUCAR: I would agree with Asa that the biggest issue in gender-affirming health care is just being able to get access. Right now, we’re seeing rollbacks in terms of telehealth across the country. We’re obviously seeing policy in red states, especially, that are barring any type of access to care. And then we even see in states like New York and Massachusetts and California so many individuals that are still unable to access basic care.
So if we know gender-affirming care is lifesaving care, why don’t we have access to that lifesaving care across the country? And unfortunately, the dearth of access really leads to people dying and just a difficulty in conducting any type of research until you’ve really garnered the trust of the community.
MADDIE SOFIA: Let’s step back and look at the big scope of research on trans health. Do you feel like there’s a divide between what researchers are focusing on and what patients want to know? Dallas, why don’t you start us off.
DALLAS DUCAR: Yeah. I mean, I think a lot of the research that I have seen, at least– and Asa, I don’t know what you really have seen come across your desk, but you know, it’s been focused on, trans people still exist, right? We know that there’s recorded evidence of gender diversity since the Neolithic Era. And so there is no debate on whether trans people exist. There is no debate on whether this type of health care should exist. This is lifesaving health care.
And most of the research has still been focused on some of just the larger discrimination that exists out there, which we as trans people know exists. We really should be having research by us and for us. And when we do that, all of a sudden there’s no question whether this is lifesaving health care, whether we’ve been discriminated against, whether we exist.
Instead, we can focus on, I think, some of the questions that really apply to us as communities of trans folks, which are what are some of the maybe more biological effects of certain types of treatments? Or what happens when you really have access to wide-ranging care? Or what are some of the protocol differences in different types of trials? Or what does good research actually look like?
MADDIE SOFIA: Right. OK. I’m keeping that in mind. Asa, I’m wondering, know you, see patients on a daily basis. What are the questions that you’re getting with those gaps, due to all of these very understandable reasons for the gaps in the research? What kind of questions are you getting?
ASA RADIX: You’re right. There are many questions that come that have not been identified as appropriate research questions by the bigger research community, right? So people will have questions.
So there are many different types of forms of estrogen. There are many different forms of testosterone. Is one of them safer than the other? What are the appropriate doses that we should be using?
But really, what are the safety issues? What are the long-term issues? For example, if you have a cisgender women, after they go through menopause, their estrogen levels drop. What about a transfeminine person who’s on estrogen? Do we need to change those doses as someone gets older?
You know, I think those are questions that people often have. I think we do need to have research to answer some of those questions, but not whether or not we should have gender-affirming care. Obviously, we do.
MADDIE SOFIA: OK, so I recognize that there are still some open questions here, right? But Dallas, just put that into context for me, because that’s true for a lot of medical research, right?
DALLAS DUCAR: I did psychiatry in my clinical care prior to being in this role. And most psychiatric studies do not study the long-term effects of psychiatric medication, right? And most psychiatric medication was not intended to be used for people in the long term. But that’s what we see in clinical care. We see people, for example, on antidepressants sometimes their whole life, right? And we don’t know what the long-term effects of those are.
But we don’t second-guess that, right? We don’t look at long-term longitudinal studies for a lot of things. We use a lot of different types of medications off label, too. So why are these criticisms being levied at trans health care when really this is just the shape of the type of clinical care we provide in this country and the lack of long-term research in many different clinical settings?
MADDIE SOFIA: I think there’s this perception that this science is somehow driving the conversation or driving legislation or doing something like that. But Dallas, I mean, do you really think science is part of that conversation? Are these studies helpful in that way?
DALLAS DUCAR: In terms of trying to combat policy with some type of scientific information, unfortunately, I just don’t think that’s going to happen in today’s political environment, at least for the GOP. I do believe that when we want research to really focus on the benefits for the trans and gender-diverse community, then that starts by really centering the questions that our communities really value most.
And I say communities because there are so many intersections of the trans and gender-diverse communities that really might have different questions. Black and Brown folks may have different questions than white trans folks. Trans folks in San Francisco or New York may have different questions than trans folks in Kansas, especially when access is different.
And the real truth to this is the more research that we do, like Asa said, the better it is, for sure. But there’s also only a limited number of times that you can really ask the same person to engage in a research study before they get tired of doing it. So I do think we have to be somewhat specific about the types of research questions that we ask so we don’t contribute to fatigue in our own communities.
MADDIE SOFIA: So Dallas, I mean, what does this type of community-centered research look like? What can be done to fill these gaps in knowledge for the trans and gender-diverse community and that can be done well and responsibly?
DALLAS DUCAR: I believe that the gold standard here really– and it’s hard to achieve– is community-based, participatory, action-oriented research. And what I mean by that, if we break that out, is community based, it is rooted in the communities that we are trying to serve, right? It’s not research on. It’s rather research with.
It’s participatory, right? So instead of having some type of investigator who is removed from the community, especially many different oppressed communities, really having investigators with that insider identity to overcome any mistrust when there’s perceived outsiders. We also reduce exploitation, objectification, increase our accuracy, the integrity of the research, the ethics of it, and really be able to hone in on the conversations that matter.
And then action oriented, to have research that doesn’t just report out to a journal but also is really intending on making some type of ethical, action-oriented change in the communities that we’re trying to serve. So it’s not just observing and leaving or some type of parachute research where you drop in and drop out. And so really making this research that is driven by us, for us, and that has outcomes that directly serve our communities.
MADDIE SOFIA: I’m Maddie Sofia, and this is Science Friday from WNYC Studios. We’re talking about the state of trans health research. Asa, I know you partner with a lot of different academics and you conduct research. What are things you look for in a good study?
ASA RADIX: Yes, we do get approached by many academic centers. And I think the first thing is the research question. Is it something that is going to be valuable? And how did they create the research question? Was it something that they actually spoke to community members about rather than– I’ll give you one example.
A researcher might be doing research in a particular area, say amongst cisgender women, for years. And then all of a sudden, a funding opportunity occurs, and they think, oh, I’m going to just take this research and I’m just going to change the gender to transgender women or to transgender men, depending on the research, and they think that they can just actually conduct the research in exactly the same way. And that’s just not possible. I think, as Dallas said, you really need to understand the community and understand the community needs before doing it.
So first, the research question. Then, we always look at the researcher. So if a researcher comes to us and clearly has no connections to the trans community, has never worked within the community before, just doesn’t have the skills, that’s also a red flag.
MADDIE SOFIA: So I want to know, from both of you, what is your vision for the future of trans health research? Asa, let’s start with you.
ASA RADIX: I mean, I would love to see all research being done with trans communities really centering those communities as far as what are the research priorities. Also, ensuring that trans researchers– and there are many trans researchers across the United States and beyond– are included at the highest levels, not just coming in as part of a community advisory board or as research assistants. And of course, research assistants are important, but we want more trans people actually leading the research. And that’s really, I think, my goal, and which is why we mentor so many young people coming up through programs, master’s programs, PhD programs. We really want to see them continue to lead where this research is going.
MADDIE SOFIA: Yeah, absolutely. What about you, Dallas?
DALLAS DUCAR: You know, I think one of the beauties of gender-affirming care in general, which is where this research really comes from, is it’s caring for the whole person. It’s caring for all of their needs. And I really believe that we are seeing new waves of trans and gender-diverse clinicians that are really offering a different model for health care, one that is led by informed consent, that is trauma informed, that is a new type of comprehensive health care that I don’t think we’ve really seen before.
And I think really taking a step back, looking at the larger picture, and then saying, this is really the framework for all research happening in this place, will not only improve the quality of research in trans health care but also will really improve the research and the ethics across the board if all others follow. So I really do believe that the trans and gender-diverse community can show the research community what good quality research looks like.
MADDIE SOFIA: Before we go, is there anything that either of you want to leave our listeners with?
DALLAS DUCAR: I think that for every trans person or trans or gender-diverse person out there, you deserve to be seen and heard and affirmed. Whether that’s through your own clinical care, you deserve to be cared for. And I believe when we really take the time to invest in hiring trans and gender-diverse folks and really ensuring that they are a part of the health care system or the research, that we have a tremendous opportunity to really raise the bar for all of this research and show what real community-driven science and care can look like.
MADDIE SOFIA: I think that’s a great note to end on. I really appreciate both of you and your time. Thank you so much.
DALLAS DUCAR: Thank you.
ASA RADIX: OK, goodbye.
MADDIE SOFIA: Dr. Asa Radix is the senior director of research and education at Callen-Lorde Community Health Center based in New York City. And Dallas Ducar is a nurse practitioner and the founding CEO of Transhealth Northampton based in Northampton, Massachusetts. Big thanks to Cassius Adair for consulting with us on this segment.
Rasha Aridi is a producer for Science Friday. She loves stories about weird critters, science adventures, and the intersection of science and history.
Maddie Sofia is a scientist and journalist. They previously hosted NPR’s daily science podcast Short Wave and the video series Maddie About Science.