Are transgender adolescents capable of informed consent? Interview with dr. Kale Edmiston


  • dr. Kale Edmiston, Nina Kuta

  • 15 gru 2024

  • Julia Zając

Polska wersja wywiadu do znalezienia TUTAJ.

If we say we know that you're depressed and are feeling terrible because you can't access this necessary treatment, but you should wait until you're 18 - well, in the meantime, someone's suffering. And then the more depressive episodes you have during these critical developmental periods, the more likely you are to have episodes later in life.

A portrait of Kale Edmiston, PhD. created by MNV @koryaginabumage

Ilustration by MNV, @koryaginabumage

Brainscans and Transness

Nina Kuta: Thank you so much for finding the time and giving us this opportunity. First, please tell us about you and what you've been up to in your professional career.

Kale Edmiston: Sure! I am an associate professor of psychiatry. and I'm trained as a neuroscientist, so my PhD is in neuroscience. I'm really interested in trying to understand the neural correlates of anxiety and depression. In my work, I use MRI, fMRI, neuroimaging techniques and I've done a lot of work in adolescents and young adults in particular.

I’ve wanted to ask you about the article you recently co-authored - a critical review of studies about hypotheses on biological causes of transgender identity. These are also quite popular in Poland, both among clinicians and the transgender community itself. One of the most popular ones concerns the influence of prenatal androgen exposure which influences later development of the sexed brain, for instance creating male identity in trans men due to the influence of high levels of testosterone. How much truth is in this narrative?

So one of the problems with the prenatal androgen hypothesis is that there's no really a way to directly test that in humans because it would be invasive to do that kind of testing on a fetus. A lot of these ideas come from work that's been done in animal models. Work done in humans has shown some differences in brain structure or function, and then also differences in digit ratio with finger length, which is supposed to be an indirect marker of testosterone exposure in utero.

My take on it isn't necessarily that I think the prenatal androgen hypothesis is wrong. It's entirely possible that there are some prenatal androgen differences that are affecting brain development. But I don't think that the evidence we have conclusively supports that.

And I think my broader question is why do we care? If being trans isn't a disease or an illness, we're not trying to cure it. Is it important to know what causes someone to be trans?

This is certainly a very good question! Before we continue I would like to talk in more detail about the studies in question. What sorts of assumptions, ideological or methodological, are being made in them?

I wouldn't want to guess as to sort of what individual scientists might be motivated by or thinking about. But I do think that there's a lot of neuroimaging literature that is designed in a pretty standardized way - they'll recruit trans people from a gender clinic, before they start hormones, and compare them to an age-matched control group of cis people. Then they'll just compare volume or activity in different brain regions between the two groups.

There are a number of problems with this approach. The first would be that a sample recruited from a gender clinic isn't necessarily representative of the trans community overall. At least in the United States, those samples tend to be more white and middle or upper middle class and less likely to be non-binary.

I'm also concerned with the lack of consideration of mental health and the mental health disparities that we know exist in the trans community. So it's possible that some of the differences that are being reported could be due to the higher rates of mental health concerns among trans people relative to cis people. So I think those are my sort of two largest concerns about some of the assumptions that go into these studies.

I'd like to see more work that thinks about the minority stress and sort of the social context in which transgender people live every day, and how chronic stress and discrimination might affect the brain. I'd also like to see a more developmental approach, thinking about what it might mean to grow up as a closeted trans person or as an out trans person and how that might impact the social world that a young person develops in and how that may, in turn, affect the brain.

In your article there was also this point that I found compelling about the fact that when we look at the scans of the brains, we see only the current state of it, and it doesn't really answer the question of how it developed. My question here would be: how do these differences that you are talking about arise? You’re talking about hormones, but are there other factors? Is this something innate or is it acquired?

It's almost certainly both. The tricky part is figuring out what proportion of each it might be and when and where and how it's impacting these things. When we think about sex differences in the brain, there's nature and nurture happening there for sure and it can be really difficult to tease apart those things because our experiences in the world as people necessarily affect and change our brains. And that's true of all of us.

So certainly there are experiences that men or women have that might affect their brain over time, developmentally, and those likely interact with things like pubertal hormones, so when we look at, let’s say, a study of adults comparing scans at one time, we can't infer causation from something like that. We can just observe a difference.

In this hypothesis there’s also this assumption that identity is something identifiable, that you can pinpoint to a singular region of the brain. But when we talk about identity, we don't only talk about some personal trait, but also about a relationship between an individual and social categories. So my question would be: do you think these complex traits could arise from such a singular influence?

Yeah, certainly. That's a good point. That is a point that we make in the paper that trans identity is a complex social phenomenon. It's a social identity and it's a pretty large leap from thinking about developmental hormones to a social identity.

It would probably be a better approach to think about factors associated with trans identity or some individual differences that are present across trans and cisgender people. So one could, for example, be interested in gender expression and think about gender expression as a complex construct. But even then, I think it would be very difficult to look at a neural correlate of something like that because these are just such complex constructs.

And I think certainly, no matter what, we're not going to find a single brain region that's responsible for a complex identity. That's not consistent with how neuroscientists think about the brain. We think about the brain as being this complex system of interconnected networks. And so we don't really think about one brain region being responsible for X, Y, or Z. behavior or identity.

Currently the topic of the sex/gender divide in neuroscience is quite a hot one and there’s a lot of debate around it. When people talk about sexed brains - how much validity does this singular category of female or male brain have?

So there are certainly overall sex differences in the brain and there are certainly impacts of hormones like testosterone and estrogen on the brain. Studies that look at large groups of people and compare brain structure or volume between cisgender male and female people have found sex differences in the brain.

But it's really important to remember that these studies are looking at large samples and averaging across groups, and that we can't predict someone's sex or gender by looking at their brain. There's quite a lot of variability within the category male and within the category female, and there's a lot of overlap and there's a lot of different regions that may be differentially impacted, um, by sex hormones. And so we wouldn't want to sort of think of a sort of platonic male brain or female brain and use that as some kind of standard.

You’ve talked before about a fundamental question here - why do people care if it's not a disease or it's not a problem? But a lot of people do care, it's quite obvious both from the growth of the scientific literature and the fact that trans people are also quite invested in this question. Why do you think people care so much about this question?

I think that there's some transphobia at the root of it. There are certainly some people who are cis who approach trans people with curiosity and othering or trying to explain why we exist. I think there's some element of that.

I think some trans people may be invested in understanding this because it might help them understand themselves better or it might help them explain or understand their identity. And if you're trans and understanding the biological basis of why you're trans is important to you, that's fine, feel free to do that. My concern comes when we start doing studies that aren't necessarily very well designed and drawing conclusions from them that we really can't reliably do. And then I become worried about what that research might be used for.

For example, I would be really concerned about the idea of having some sort of biomarker that's a litmus test for whether or not someone could receive transition related care.

My sort of educated vibe about this was that when we look at the scans of brains and when we ask a person about their identity, the popular interpretation is that the scans are the more reliable or “scientific” way of assessing the inner experience or identity of a person. But for me, it's quite obvious that questioning someone is a more reliable and more direct way.

Yeah, I agree with you. I think we need to trust people to be able to understand and describe their own experiences and who they are. And we certainly need to trust trans people. We know who we are and that's certainly more reliable to me than a brain scan.

If you think about it, we can't even take a brain scan and determine if someone has a psychiatric disorder or not by looking at it. So I'm not sure why we would think that we could determine who's trans by looking at a brain scan either.

We know what neuroscience cannot do for trans people, but are there any things that neuroscience can do for us as of now?

Kale Edmiston: I've seen studies using neuroimaging that have looked at things like brain response to social exclusion among trans people and show that trans people have different patterns of brain activity when they experience social exclusion and are perhaps more sensitive to social exclusion than cis people. Other studies have shown relationships between brain activity following access to transition-related care and how that is associated with improvements in mental health.

I think it would be really helpful to do work in depression, anxiety and other health concerns that trans people are more likely to experience. So any research into effective treatments for, for example, depression would necessarily benefit trans people.

And I could also see a situation where, you know, maybe transgender people are more likely to experience certain types of symptoms within the construct of depression. It could be that certain treatments for depression or anxiety might be more or less effective for trans people, but no one's really looked at that.

I think things that might help us better serve trans people and really address the health disparities that we face

Going further, your other, quite recent paper that you’ve co-authored is about a topic very close to our mission and that’s adolescent gender transition. Fortunately, here in Poland, I would say that the discussion is not as hostile as the one happening currently in the US. However, from talking with numerous clinicians or parents, it's also quite visible that there are a lot of similar assumptions being made about trans adolescents - that they are too young to be fully conscious of the consequences of gender-affirming care and they cannot consent to that.

Your recent paper talks exactly about that - the neurocognitive capacity of trans adolescents to understand the medical decisions they are making. How would you respond to these concerns about the ability to consent?

The argument that we make in this paper is that concerns about adolescents not being able to engage in thoughtful decision-making or adolescents being impulsive and therefore unable to make decisions about their health are certainly not supported by the neuroscience literature.

There's a really large neuroscience literature about adolescent decision-making and adolescent impulsivity in general. And it does show that there are situations where adolescents are more impulsive than adults, but they're very specific situations. They're what we would call hot context - these would be situations where there's pressure to make an immediate decision and there are no adults present. These are contexts like a peer pressuring someone to drink alcohol or a situation where someone maybe has their friends in the car and they decide to drive recklessly. Those are the kinds of situations where adolescents tend to be more impulsive than adults.

These situations don't really have much to do with medical decisions. Medical decisions, particularly the decision to have medical interventions for gender-affirming care, are drawn-out decisions that take some time and they are being made while supported by adults - by family, caregiver, and/or parents and also by a healthcare provider. So these aren't decisions that adolescents can make quickly on their own.

I'm not sure what the healthcare system is like in Poland, but in the United States, it can take months to up to a year for someone to schedule an appointment to see a gender-affirming care provider. There's a lot of time and delay that's built into the system. And then from there you go to see a care provider and you're evaluated, there's a lot of conversation about what the potential outcomes are with whatever the intervention is - ongoing conversations between patients, their families, and the health care provider. So we know from the neuroscience literature that in these sorts of contexts adolescents are capable of making adult-like decisions, that they're able to be careful, thoughtful, and deliberative when they make these decisions.

Sure, it's certainly true that adults’ support during medical decision-making is required. In the topic of adolescent transition, the other big concern is about mental health and the ability to consent. Trans teenagers are more often suffering from other mental health issues, like depression, body image and anxiety issues, minority stress, or unsupportive environment, they are also more often neurodivergent. Older diagnostic models required trans teens to have no co-existing issues, like with the traditional Dutch model back in the 90s.

Yeah, but that hasn't been the case in WPATH Standards of Care for quite some time.

The most current, 8th Edition of WPATH Standards of Care states that a diagnosis like autism, depression, anxiety are not contraindications to receiving gender-affirming care. If you have those diagnoses and gender-affirming care is appropriate for you, you should receive it.

And of course, if someone's depressed, denying them access to gender-affirming care, which we know improves depression, is nonsensical. The only thing that I can think of off the top of my head that there's really a basis for in the literature is if someone's acutely, actively psychotic - if someone's having some sort of psychotic delusion that they're the opposite gender, but when they're not psychotic, they don't feel that way anymore. To assess that, you would just need to get the psychotic episode under control and have those symptoms managed, and then reevaluate and proceed from there.

The Standards of Care and the scientific literature don't at all support the idea that any kind of psychiatric diagnosis makes someone automatically ineligible for transition-related care. SOC 8 does state that there might be specific circumstances where you would want to make sure a mental health concern is managed - if someone wanted to have surgery that required quite a bit of aftercare, but were so depressed that they weren't able to take care of themselves and they didn't have a plan to have support for aftercare, then you would want to take a step back and develop a plan for proceeding with the patient to help manage and get the depressive symptoms under control and sort of go from there. But those are very specific circumstances.

I’d like to focus a bit more on the topic of autism - a lot of neurotypical persons describe autism as a contraindication based on the conviction that autistic people do not understand gender as well as neurotypicals. How would you approach the issue of gender-affirming care for autistic adolescents?

Actually I did my dissertation work in autism and that's a population that is very near and dear to my heart! There's no evidence to support the idea that autistic people don't understand their gender or aren't able to make decisions about their healthcare.

When we think about gender-affirming care, it's healthcare, right? We should think about it the same way that we would think about any other healthcare. We don't prevent autistic people from making other sorts of healthcare decisions. And so why should this be an exception? I think when we talk about capacity for consent, we want to use the same guidelines that we would use for any other type of health care.

If you wanted to evaluate someone for the capacity to consent to have knee surgery, it should be the same process for gender-affirming care.

Yeah, I think there is this underlying assumption that gender-affirming care is not really that needed, that you can just wait till you’re 18 years old and then make decisions, why do it now, and a lot of these assumptions are just grounded in either ignorance or in willing denial of our identities or gender dysphoria.

Yeah, as a person who studies adolescence and is invested in depression and anxiety research, we know that it's important to intervene early. If we say we know that you're depressed and are feeling terrible because you can't access this necessary treatment, but you should wait until you're 18 - well, in the meantime, someone's suffering. And then the more depressive episodes you have during these critical developmental periods, the more likely you are to have episodes later in life.

So it's really important that we do what we can to prevent the onset of depressive episodes, and if that’s not possible, at least reduce the sort of frequency or severity of them. It's really important to do that as early as we can.

So in other words, for trans people depression during adolescence can cause irreversible damage?

Yes. Not doing something also has consequences and we know that those consequences are negative.

Kale Edmiston, PhD is an Associate Professor of Psychiatry and Biomedical Sciences at UMass Chan School of Medicine. Dr. Edmiston obtained his PhD in Systems Neuroscience from Vanderbilt University. He studies the neural correlates of risk for depression and anxiety using functional MRI methods. When he is not being a scientist, he likes to garden, make ceramics, and go hiking with his boyfriend and their two dogs.