Understanding How Transgender People Fit Into Medical Research and…

There has been a long history of pathologizing and colonizing gender, as well as transphobia structurally placed within society.

In previous generations, the expectations for transgender people to transition were based on the assumption that they were going to be heterosexual (straight) and adhere to binary expectations of gender. This expectation was extremely biased, based on colonial standards of gender, and impeded healthcare for many transgender people.

The way trans people are treated throughout healthcare and insurance systems in the United States often reveals how marginalized and sidelined transgender and other minority groups are.

Many times, the root of these problems stems back to the research and clinical trials being done — or not being done. Preconceived notions and bias can inform research and clinical trials which then, in turn, affect the treatments that are based on this health information.

These gaps in healthcare reveal so many ills about the medical industrial complex. Recently, a group of transgender people working in HIV research and public health published an article illustrating the harmful methods that current research often uses, asking for further research to benefit the lives of trans people.

We hope that medical organizations continue to better themselves and create more opportunities for comprehensive medical research regarding transgender people.

But while that research is in the works, you may still have a lot of questions about how you fit into clinical trials as a trans person. So we’ll look at the relevant history, the latest research including trans people, and how it can apply to you.

Language matters

We’ll be referencing many LGBTQ+ related terms in this article. Please visit this series’s previously outlined definitions if you need any further context.

While this article is focused on how hormone replacement therapy (HRT) can affect the bodies of trans people that choose to medically transition, it’s important to remember that not every trans person does so. Taking HRT is just one of the many optional steps you can take on your gender journey.

How are transgender people represented in clinical trials?

There is a long history of neglecting and misrepresenting transgender people throughout medical history. Much of this trend continues into recent decades.

Some of the most offensive research about trans people is just simply asking the question of why trans people exist or implying that trans people do not exist.

In the past

In 1993, a group of University students at the Clarke Institute of Psychiatry in Toronto conducted a flawed study on the “perceived attractiveness of boys with gender identity disorder.” This shows ill-conceived ideas about gender at best and transphobia at worst, misgendering the trans girls or transfeminine children in the study.

The idea that trans girls become trans girls because they’re “cute” completely ignores the more relevant idea that these young trans girls might be making themselves look more feminine to help their gender dysphoria.

Similarly, in 1996, the same group of researchers “judged the physical attractiveness of girls with gender identity disorder and clinical and normal control girls” to show that trans boys or transmasculine children had received less attractive ratings.

First, there is no need to rate children’s attractiveness at all. Second, the implication that transgender people transition because they were unattractive cisgender (cis) people is a dangerous concept.

Then there’s research from 1991, asking more questions on why and how transfeminine children exist in the first place by insinuating that they exist because of their mother’s mental illness.

Not only does this contribute to the ongoing stigma of mental health conditions, but it also implies the offensive notion that traumatic events cause someone to be transgender. This is just one example of how being transgender has been historically treated as an affliction or pathology to be fixed — not just one of the many ways gender is expressed by humans.

A lack of understanding of gender identity can also lead to flawed research.

Oftentimes, trans people are not compared with their cisgender counterparts. Trans men are often compared with cis women, while trans women are compared with cis men.

These comparisons are misleading because many trans people undergo HRT as part of their transition, which will cause their bodies to react in a way that’s more similar to that of a cisgender person of the same or similar gender.

How to advocate for your care as a trans person

Although all healthcare should be accepting and inclusive, there will be times you need to advocate for your care as a trans person. What this looks like:

Asserting your chosen name and pronouns.

Asking if the clinic or doctor has served other transgender clients in the past.

Bringing a friend or trusted loved one with you that day for emotional support.

Requesting the doctor or nurse to use or avoid using certain terms for your anatomy.

For more tips, please see this guide.

Current representation and moving forward

Thankfully, the tide is starting to turn in clinical research. More trans people are not only involved but are often designing and heading the research being done.

The information learned in recent years has been able to improve the healthcare of millions of trans people around the world.

You’ll see many of these studies referenced in this article. Some excellent examples of recent studies of the community:

In 2020, the first study was done on endometriosis in transmasculine adolescents. Researchers helped establish some of the first parameters for this condition in transmasculine people. They recommend further research on treatments, as HRT was not found to resolve symptoms for everyone surveyed.

In a 2022 study, researchers looked at the effect of HRT on cardiovascular and skeletal health. Researchers found that HRT does present some risk of myocardial infarction (heart attack) for transfeminine people, but this risk was not present in transmasculine people. However, HRT was found to improve skeletal health in the lumbar region of the spine.

In 2022, researchers published in The Journal of Clinical Endocrinology & Metabolism that there’s no difference in the rate of type 2 diabetes in cisgender people and trans people undergoing HRT.

According to 2017 census data, a million people identify as transgender in the United States. And many of them have participated in the aforementioned studies and ones we’ll be referencing later in this article.

If you would like to get involved, visit ClinicalTrials.gov to learn about ongoing scientific studies that are focused on transgender health.

Because it can be so hard to find information, a majority of trans patients’ knowledge about HRT comes not only from their clinicians but from anecdotes and personal experiences they hear of other trans people. Susan’s Place, for example, has been a resource for a lot of questions trans people might have regarding social, legal, and medical transitioning from older trans people and trans peers.

Even I, a trans man, have learned from experience that an increase in testosterone can exacerbate already existing pelvic pain or painful cramps — and many other transmasculine people know this. This knowledge is addressed in “The GLMA Handbook on LGBT Health,” but that handbook isn’t readily available for most people.

Including transgender people in clinical research is something we need not only to decrease discrimination but to improve current treatments for everyone — trans and cisgender people alike.

Why is further research important?

There’s still a disparity in the quality and quantity of research done on transgender healthcare, and this is compounded by the different intersections of marginalized people within trans communities.

For instance, there are 1.2 million U.S. people that are nonbinary. While this is a large group of people, they are very rarely included in clinical studies that examine the effects of gender on different conditions.

There is also a need to research how HRT affects trans people’s reproductive systems, overall health outcomes, heart conditions, and more.

For example, there is an increased risk of ovarian cancer in trans men, which may or may not involve the use of testosterone. Not only is this not well understood by current research, but trans men are usually left out of testing initiatives for ovarian cancer, which can be especially dangerous for this “silent” cancer.

Further research can only help us to better understand differences in bodies and illnesses, and how combinations of medications and existing treatments could improve everyone’s lives.

This won’t only help transgender people — though that should be reason enough — it will also teach us a lot about how the human body works.

Intersectionality is the best way forward

Much of the currently available research fails to consider the intersecting identities and the further marginalization that trans people experience.

For example, an overweight trans person will have a harder time accessing gender-affirming surgeries because of the BMI restrictions in studies, which even research has shown is limiting and dangerous to patients’ health and safety.

Additionally, institutionalized racism affects how doctors and medical students perceive the Black community, leading to a missed diagnosis, incorrect diagnosis, or even death.

This 2019 study emphasizes the importance of cardiovascular comorbidities such as smoking, reduced exercise, diabetes, and non-Caucasian ethnic origin, all of which were seen in higher numbers in the transgender population. It’s a great example of how intersectionality helps create a more accurate picture of these demographics.

More work must be done to analyze the care between trans People of Color and white trans people, and the various risk factors that might change between them.

Are risk factors different for trans people?

As we’ve said throughout this article, the more research that can be done on this topic, the better — there’s a lot we still don’t know. But recent research has taken a closer look at how trans and cisgender people may be affected differently by various conditions.

For instance, whereas most cis women expect a decrease in bone density as they age, transgender women are expected to have their bone density improve from HRT.

This is similar to the way HRT can benefit cisgender women after menopause. Transgender men, however, don’t tend to see a change in their bone density.

In regards to cardiovascular health, there are some conflicting studies.

One study in 2018 suggests trans people appear to have an increased risk of cardiovascular disease, heart attack, and stroke — but it wasn’t clear if this was due to HRT or a social side effect from increased stress and discrimination.

The latter may be more likely — a more recent study from 2022 found no increased risk in any of those categories in transgender men.

When it comes to the risk of developing type 2 diabetes, while transfeminine people may be at a higher risk compared with cis women, the corresponding difference relative to cis men isn’t discernable. Moreover, there’s little evidence that type 2 diabetes occurring in either transfeminine or transmasculine persons is attributable to HRT use.

If you’re a trans person and have concerns about how HRT may affect any of your health conditions, consult a doctor or other healthcare professional if possible.

Though there are some general risks and side effects (keep reading to learn more), a clinician should be able to discuss them with you and help you find options for treatment that are best suited to your individual needs.

When do your risk factors start to change?

While more research needs to be done, there are documented risk factors for HRT in trans people compared with cis people. Overall, it depends on the person receiving HRT.

Although people using HRT should be consistently screened, current guidelines for cancer screening recommend that transgender people follow the same schedule as cisgender people.

For example:

Anyone over 50 years old should be screened for colorectal cancer, regardless of HRT.

Trans men are seen to have the approximate same risk of breast cancer that cis men do (after gender-affirming top surgery), but those who have not had top surgery are recommended to follow the same guidelines as cis women.

For heart attacks, the risk for trans men was higher compared with cis women but was the same compared with cis men. It can be noted that evidence supports that gender-affirming hormonal therapy in trans women may reduce heart attack rates but not to the level of cis women.

The University of California San Francisco recommends that transfeminine people who have been on HRT for at least 5 years undergo screenings for breast cancer in line with their cisgender counterparts. After age 50, consult a doctor or other healthcare professional about the best mammogram screening schedule for you.

Most medical researchers and specialists recommend that people using HRT get regularly screened after 5 years on HRT for any of the risks posed to them — such as vaginal atrophy, breast cancer, polycythemia, and decreased liver function.

That’s because, comparatively, 5 years is the same amount of time a cisgender person would experience puberty and begin adult physical development.

Generally speaking, most people are expected to visit a clinician every 3 months during their first year on HRT and then every 6–12 months following.

During these exams you’ll undergo bone density tests, blood tests, Pap smears, cervical screenings, mammograms, and other tests to measure your overall health and your transition.

What are the common side effects of HRT in transgender people?

Trying to understand your health and medical conditions as a trans person can be a frustrating and isolating experience. It may be difficult or impossible to find medical research that includes us in the findings.

While the exact information for your demographic may not be available, it can be helpful to know how HRT might affect your body.

Most of the time, transgender people are told by clinicians that the side effects of hormone therapy will mimic that of their cisgender peers going through the same bodily hormone transformations.

But there are some ways in which your risk factors may be different. Here are some general side effects of HRT that you may want to be aware of:

For transfeminine people:

bone loss

thrombosis or deep vein thrombosis (DVT)

stroke or seizure disorders

heart disease or high blood pressure

increased risk for breast cancer

blood clots or pulmonary embolism (block in a blood vessel in the lungs)

altered liver function

For transmasculine people:

polycythemia (overproduction of red blood cells)

high blood pressure

cardiovascular conditions

migraine episodes

sleep apnea

diabetes

How to get involved with clinical trials

Some of the best research being done is through community-based organizations.

Community-based research can be a better approach to research involving minority groups because it’s an equitable partnership involving community members, organizational representatives, researchers, and others in all aspects of the research process.

A great example of this is a 2021 report on health research priorities in trans and nonbinary communities across four different U.S. states done by the Howard Brown Health’s Center for Education, Advocacy, and Research.

You can personally get involved in clinical trials and have a voice by participating in college and university studies, the Pride Study, and by asking any local clinic, doctor’s office, or hospital about available research opportunities.

You can also search ClinicalTrials.gov for any studies that are currently looking for participants.

Make sure to always discuss any possible trials with your primary healthcare professional before applying, especially if it would alter any of your existing medical treatments.

The bottom line

All people deserve adequate, holistic, and comprehensive healthcare.

Trans people’s healthcare is often stigmatized, sensationalized, or disregarded by most health institutions. Trans people can be further marginalized by doctors and the problematic systemic structures that surround them.

Some of the main areas that need additional research include the long-term effects of HRT on trans people, the best medical treatments for trans people, and the intersectional effects of their other disabilities, illnesses, and factors that may complicate their quality of life.

Most importantly, minority communities need to have a say in the research being done on them.

Ideally, trans people would be involved in all levels of planning, performing, and communicating the findings of the studies. We’re starting to see this more and more in modern scientific studies.

While this research is still new, the latest studies show that undergoing gender-affirming hormone treatments for at least 5 years aligns your body more closely with that of cisgender people. This will affect a lot of things, and your risk factors for various conditions and diseases are part of that.

If you have concerns about your changing risk factors, consult a doctor or other healthcare professional.

Soren Hodshire (he/him/his) is a queer trans writer based in Chicago, Illinois. After getting his Bachelor of Arts in cultural studies and minoring in women, gender, and sexuality studies, Soren has been organizing, writing, fundraising, and facilitating for queer and trans organizations. He’s deeply committed to community building and solidarity across marginalized groups. When Soren isn’t writing or watching video essays, you’ll find him listening to a podcast. You can follow him on Twitter (as long as it still exists) and Instagram.

Posted : 2024-05-28 13:59

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