Social Science & Medicine 226 (2019) 190–197

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Social Science & Medicine

journal homepage: www.elsevier.com/locate/socscimed

Performing informed consent in transgender medicine T

stef m. shuster
Michigan State University, Lyman Briggs College & Department of Sociology, 919 E. Shaw Ln., East Lansing, MI, 48825 USA

A R T I C LE I N FO A B S T R A C T

Keywords: Using in-depth interviews with 23 physical and mental healthcare providers and observations at transgender-
United States specific healthcare conferences between 2012 and 2015, I examine how medical providers negotiate informed
Informed consent consent processes in their clinical encounters with trans patients. While a growing body of scholarship has
Medical authority examined informed consent in scientific research from the patient's perspective, a gap remains in how informed
Decision making
consent is understood in clinical encounters, and from providers' perspectives. I use the case of trans medicine,
Transgender
Health inequalities
an emergent field of medicine that has not yet implemented standardized procedures or policies that shape
providers' decision-making. I demonstrate how many providers of trans medicine give voice to following in-
formed consent, but fail to actually practice it in their work with trans patients. In performing informed consent,
providers revert to a paternalistic model of care, which amplifies their medical authority while veiling power
differentials in their clinical encounters and decision-making in trans medicine.

1. Performing informed consent in transgender medicine
With few exceptions, such as medical emergencies, medical provi-
ders in the United States are mandated to obtain consent from patients
before performing medical procedures. Developed in response to con-
cerns that medical providers held too much power in scientific research
and clinical encounters (Doherty et al., 2017), informed consent models
are intended to empower patients by amplifying self-determination
over their bodies and health (Cavanaugh et al., 2016; Miller and
Boulton, 2007). In its’ literalist rendering, providers are tasked with
offering all of the available information about the risks and benefits of a
medical procedure, and patients are “informed” to make decisions on
their own behalf. But, as social medicine scholars (e.g. Armstrong,
2003) have demonstrated, most medical practices, knowledge, and
decision-making is shaped by broader social, historical, and cultural
contexts (see also Buchbinder, 2016). Informed consent is not im-
pervious to these social forces, as it asks providers to engage in inter-
pretive work - from patient encounters to negotiating consent docu-
ments (Jacob, 2007). Specifically, providers must assess the conditions
under which consent is required, their perceptions of what information
is relevant to the clinical encounter, and whether or not a patient has
offered consent and is capable of understanding the information relayed
(Entwistle et al., 2006).
In recent years, a rich body of scholarship related to informed
consent in clinical trials and from patient's understandings has emerged
(Corrigan, 2003). But, few studies in bioethics and social studies of
medicine on informed consent have examined this aspect of medical
decision-making from the perspective of medical providers, and in
clinical encounters. I begin filling this gap by drawing on in-depth in-
terviews with 23 providers of trans medicine and observations con-
ducted during trans-specific healthcare conferences between 2012 and
2015. I analyze how medical providers understand and practice in-
formed consent in their clinical encounters with people seeking gender-
affirming medical interventions such as hormone therapy.
Trans medicine is well suited for exploring informed consent in
clinical encounters. Few providers who work with trans patients have
clinical experience in the area of trans medicine (Hughto et al., 2015;
shuster, 2016), professional medical associations have yet to produce
consensus statements on how to work with this population, and there
remains a considerable amount of uncertainty regarding the long-term
health risks of hormone interventions (Poteat et al., 2013) because of a
lack of rigorous clinical trials. As an emergent area of medicine, it is not
bounded by the norms and expectations that shape decision-making in
routinized medical interventions. When medical interventions are
routinized, it enables providers to make decisions that conform to
agreed-upon professional norms and deal with ethical dilemmas, as
what was once perceived as “extraordinary” becomes routine
(Chambliss, 1996, p. 30). In medical arenas lacking routinization and
consensus in best practices, medical providers have been found to
double down on asserting medical authority to bolster their claims to
expertise, even when such claims are tenuous (see Armstrong, 2003;
shuster, 2018). Medical providers working with trans patients are also
placed in precarious positions as they seek clarity in how to medically
assess a gender identity (Davis et al., 2016; shuster, 2016. Combined,

E-mail address: sshuster@msu.edu.

https://doi.org/10.1016/j.socscimed.2019.02.053
Received 15 July 2018; Received in revised form 19 February 2019; Accepted 27 February 2019
Available online 03 March 2019
0277-9536/ © 2019 Elsevier Ltd. All rights reserved.
s.m. shuster
these features of trans medicine have been found to increase stigma in
clinical encounters (Paine, 2018) and impede the potential for colla-
borative decision-making (Dewey, 2015).
I contribute to the scholarship on medical authority and informed
consent in clinical encounters by pinpointing how medical providers’
understandings, and practices under the auspice, of informed consent
has spillover effects in perpetuating health inequalities in the clinic.
Over the last few years, medical providers of trans medicine have fol-
lowed broader trends in medicine towards informed consent, and in an
attempt to alleviate extreme power differentials in clinical encounters
with trans patients (Deutsch, 2012). As I demonstrate, medical provi-
ders use the language of informed consent in describing their decision-
making with trans patients, but how they describe this process bears
little resemblance to the legal and medical underpinnings of this model.
Their practices more closely resemble a paternalistic medical model
that exerts biopower over clients, while veiling power differentials, in
their clinical encounters and decision-making in trans medicine.
2. Background
2.1. The logics of informed consent
Informed consent policies and procedures were established fol-
lowing the Nuremberg Code, which sought to alleviate patient experi-
ences with abuse from physicians and scientists, after international
attention was drawn to the gruesome experimentation conducted by the
Nazis during World War II, and other such experimentation on humans
without their consent (Cavanaugh et al., 2016; Jacob, 2007). It includes
a provider's obligation to inform patients about the known risks of
pharmaceutical drugs, medical procedures, and tests. Thus, the intent of
employing an informed consent model in medical care is to support
patients' rights of, and capability for, autonomy. In medical and sci-
entific arenas, “autonomy” is based on an ideological principle that
patients and test subjects should have the right to self-determination in
health-related matters, and the opportunity to make free and informed
choices about their bodies, health, and lives (Corrigan, 2003). In con-
trast, medical paternalism refers to the idea that “doctor knows best”
because of their professional expertise, and that medical professionals
should be the primary decision makers in healthcare (Doherty et al.,
2017, p. 206).
While a keystone of informed consent is built upon increasing pa-
tient-centered health decisions, this principle does not always transpire
in legal arenas. In the US there are competing definitions about in-
formed consent and upon what standards the model should be built –
professional knowledge or patient's knowledge (Miller and Boulton,
2007). Specifically, these standards include: 1) the professional stan-
dard, or when a physician decides what information is to be provided to
patients based on professional association standards or 2) the reason-
able person standard, or when a patient is to be informed in terms of
what a reasonable person in the patient's position might like to know
(Mazur, 2013, p. 762–763). In theory, these two standards should
overlap. In practice, they are divergent legal concepts that bind pro-
viders to a different set of principles of responsibility. The professional
standard favors medical authority, while the reasonable person stan-
dard favors consideration of a hypothetical patient and the idiosyn-
crasies of any given individuals' need for information. Half of the states
in the US follow a professional standard while the other half follows a
reasonable person standard (Raab, 2004).
In light of the US legal systems' ambivalence about whose knowl-
edge should be prioritized in an informed consent model, most of the
social scientific scholarship on informed consent has centered on clin-
ical trials and scientific research (see for example Gikonyo, Bejon,
Marsh and Molyneux, 2008). This is surprising, as most contemporary
clinical encounters and medical decision-making occurs within an in-
formed consent model. Social scientists are well poised to examine how
social attributes – like gender –shape decision-making in clinical
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encounters, and when there is ambiguity in how providers should
handle legal-based mandates for obtaining informed consent. In
healthcare, it has been well documented how gender mediates clin-
ician's treatment decisions (Springer et al., 2012) and notably, to the
detriment of women's well-being (Welch et al., 2012). Recent scholar-
ship has also begun to explore how trans people fare in health en-
counters. Overwhelmingly, the results point to the presence of extreme
inequalities (see, for example, Davis et al., 2016) and substantial dis-
crimination in healthcare encounters (Paine, 2018; Poteat et al., 2013).
Informed consent is also built upon several implicit assumptions
that are not replicated in the scholarship on medical decision-making.
For example, a key assumption of informed consent is that individuals
are rational decision-makers. As Felt et al. (2009) demonstrated in their
research on volunteers for skin tissue donation following a surgical
procedure, even when patients are presented with multiple options for
treatment and the risks and benefits of medical intervention, in-
dividuals rarely have the capacity to take in all of the information
available and make rational decisions free from bias. On the provider
side, informed consent becomes muddled by the question of how might
providers share all of the available information for procedures when the
“best” procedure is unknown? Providers actively construct medical
knowledge by emphasizing the benefits and minimizing the risks of
certain procedures (see Littlejohn and Kimport, 2017). And, providers
favor some procedures over others and sometimes withhold informa-
tion from patients. Entwistle et al. (2006) showed how information
relayed to patients seeking a hysterectomy stemmed from a surgeon's
surgical preference, while the women in the study were given few to no
options about the surgical route, or the risks and benefits of alternative
approaches.
Further complicating the principles of informed consent is the fact
that it is a process of decision-making that occurs within social contexts
(Jacob, 2007). As with much of social life, norms that shape expecta-
tions about appropriate and normative behavior bear out in medical
encounters, too (Almeling, 2007; Armstrong, 2003). Corrigan (2003)
and other scholars (e.g. Dewey, 2015; Jacob, 2007) have shown how
both patients and doctors bring pre-existing norms and values to clin-
ical encounters that shapes their expectations and directs their behavior
above and beyond merely obtaining informed consent.
2.2. Power dynamics, medical authority, and informed consent
Two crucial elements missing from the existing scholarship on in-
formed consent is the role of power in shaping how providers under-
stand and practice informed consent, and how to obtain informed
consent without perpetuating inequalities. In an ideal informed consent
model, power differences between provider and patient are eliminated
as each seeks to make informed decisions. But previous scholarship has
exemplified how it is difficult for providers to relinquish their medical
authority, and for patients to assert their power and expertise accrued
from lived experience, within the clinical encounter (see, for example,
Conrad, 2005; Davis et al., 2016).
Social factors, including demographic variables, may amplify the
power differentials between patient and provider. Gender is a particu-
larly salient mechanism for perpetuating interactional inequality in
health encounters. From hysteria (Briggs, 2000) to fetal alcohol syn-
drome (Armstrong, 2003) to cervical screening programs (Stagg-Taylor,
2013), scholars of gendered medicine consistently demonstrate how
gender norms and stereotypes are entrenched in medical and scientific
domains and detrimentally effect women's health-seeking behaviors,
treatment by the medical community, and sense of empowerment
(Springer et al., 2012; Welch et al., 2012). For trans patients, gender
norms shape medical encounters as providers – even implicitly - expect
them to be compliant to medical authority, uncritical of the various
steps one must take before accessing interventions (such as therapy)
and present themselves as those who desire to transition from one
binary gender to the other (from woman to man, or man to woman).
s.m. shuster
These ways of constituting a “good” patient, within an informed con-
sent model, create restrictive tropes of trans people in medical en-
counters, as these tropes and expectations are “socially authoritative
and regulate medical activities and knowledge” (Fujimura, 1996; Stagg-
Taylor, 2013, p. 183).
Over the last several decades there have been massive changes in
the structuring of US medicine. Well-known processes, such as medi-
calization, that have previously been understood to amplify medical
authority have become multi-faceted and dispersed across stakeholders
(Conrad, 2005) as new parties compete for power and legitimacy in
medicine. With these structural changes, providers' medical authority
has declined over time (see Timmermans and Oh, 2010). In light of
these findings on how medical authority is mediated by social factors
such as gender and bias, and declining over time, there may be new, but
overlooked, opportunities for providers to uphold and assert their au-
thority in clinical encounters. In what follows, I demonstrate how in-
formed consent is one such new mechanism. Medical providers say they
follow the tenets of informed consent, my analysis shows how their
practices more closely resemble a paternalistic model of medicine
where “doctor knows best.” In spite of the potential for informed con-
sent to level power differences in clinical encounters, providers’ med-
ical authority remains intact, as it becomes veiled by providers using
the rhetoric of informed consent.
3. Methods
To examine how providers of trans medicine understand and prac-
tice informed consent in clinical encounters with trans people, I used a
mixed-methods strategy including in-depth interviews with healthcare
providers in the United Stated and observations conducted at trans
healthcare conferences between 2012 and 2015. The Institutional
Review Board at Duke University approved this research under protocol
number C0878.
3.1. Data collection
I conducted 23 in-depth semi-structured interviews with mental and
physical healthcare providers from a variety of specialties and theore-
tical orientations, locations across the United States, and work settings.
To identify interviewees, I used a purposive snowball sampling method
that began in my networks that originated from trans healthcare ad-
vocacy in the United States. Providers sent the call for interviews to
their personal contacts and posted the call on trans-specific medical
listservs. Once a provider indicated interest in participating in the study
and we had arranged a day and time for the interview, I sent an in-
formed consent memo to the participants a week ahead of the inter-
view. At the beginning of the scheduled interview time, I reviewed the
memo with participants and obtained verbal consent to proceed. No
respondents opted out of the study. All names and identifying in-
formation, outside of area of specialization and work setting, have been
changed to protect respondent's confidentiality.
Interviews were conducted primarily in person or on a video con-
ference call. The interviews ranged in length from one to two hours,
were recorded, and were transcribed verbatim for data analysis pur-
poses. Interviewees were not asked explicitly about what model of
consent they used in the clinic (traditional or informed consent).
Rather, I asked broad categories of questions that included the provi-
ders’ background in medicine, their professional association member-
ships, the climate of the organizations they worked for, and their ex-
periences working with transgender clients.
In addition to the interviews, I also attended trans-specific health-
care conferences in the U.S. between 2012 and 2015. Conferences
present a rich site for examining how providers teach each other how to
work with patient populations and in negotiating informed consent. In
observing five separate trans healthcare conferences over a total of 15
days, I composed hundreds of pages of field notes from conference
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proceedings. I took notes on the information that providers presented in
workshops that appeared in the medical education track of the con-
ference, the questions that conference attendees asked, and how pa-
nelists responded to these questions. Providers often utilized case stu-
dies and patient reports to craft their presentations, which offered a lens
into their meaning-making in working in trans medicine and their
perceptions of ethical ambiguities that might arise in making medical
decisions and the informed consent process. Thus, these conferences
helped illuminate how providers teach each other how to work with
trans patients, ethical considerations in this arena of medicine, and
their professional experiences and case notes in interactional dilemmas
with patients.
3.2. Data analysis
To analyze the interview transcripts and observations, I used an
inductive approach - a recursive process of moving back and forth be-
tween the raw data, coding schema, and existing literature with the
goal of looking for patterns in the data. Beginning with the observations
from healthcare conferences, I noted that many providers used the
rhetoric of informed consent, but in describing an informed consent
transaction, realized providers were actually narrating a traditional
model of medicine that upholds power differentials between patients
and providers. I turned first to the literature from bioethics and social
studies of medicine to grapple with how others have examined in-
formed consent and then began coding the interview transcripts for
moments when providers described a typical clinical encounter and
patient intake process (the place when informed consent is most likely
to happen). I concluded data coding by going through the interview
transcripts one more time to understand when providers felt obligated
to employ the rhetoric of informed consent, but did not conform to the
basic tenets of this model of decision-making.
I identified two related patterns that arose in provider's disconnect
between the theory and stated practice of informed consent in trans-
specific medical encounters: 1) inconsistencies in how providers de-
scribed approach to informed consent; and 2) moments when providers
departed from a standard informed consent model and, in the process,
asserted their medical authority over the stated desires of their patients.
4. Results
In the interviews and observations conducted during trans-specific
medical conferences, provider's descriptions of how they understood
and practiced informed consent was at odds with the tenets of this
model of decision-making. Instead, their descriptions more closely re-
sembled a paternalistic medical model characterized by a provider as-
serting authority in the clinical encounter and overriding a patient's
decision-making processes about whether or not to proceed with a
medical intervention. First I examine how providers of trans medicine
understood informed consent. Then, I analyze how providers practiced
informed consent in their clinical encounters with trans people.
4.1. Understanding informed consent
Most of the providers interviewed for this study (87%) shared that
they always used an informed consent process in trans medicine. But
how they understood informed consent varied across providers. Some
thought it meant simply sharing information about the risks and ben-
efits of a procedure with their patients, and collaboratively making a
decision about whether or not to proceed. Others followed the informed
consent process to a degree, but modified it by including an assessment
to determine if a patient had the capacity to understand the information
offered or was ready to make the decision to begin trans-specific in-
terventions. Underlying providers’ definition of informed consent was
the paucity of clinical trial data for the long-term risks of trans medical
interventions and lack of consensus in the broader profession of
s.m. shuster
medicine on what criteria should be used to allow, or block, trans
people from accessing trans medicine. These features presented some
difficulty for providers in how they articulated their definition of in-
formed consent, as inconsistencies were brought to the surface between
the definition of, and in recounting how, informed consent transpired in
their clinical encounters with trans people.
For those providers who took a literalist interpretation of informed
consent, they defined it as first and foremost, sharing information with
patients and then entering a shared decision-making process. Jerry, a
family care provider defined the informed consent process as:
The patient comes and tells me what their symptoms are, and in
conversation we evaluate, assess, and prioritize the symptoms. Then
we have a conversation about therapeutic options. This applies to
sinus pain and pressure, diarrhea, or even gender identity issues.
There is always the option of doing nothing, and what the im-
plications of doing nothing may be. I ask, “what are you hoping that
I will do for these symptoms?” And we have that whole conversa-
tion, and then start to craft a management plan. The management
plan is a… {pause} I take great pains to explain to my patients that it
is an iterative process. So we do something, and evaluate how that
goes.
Fewer than 10 percent of interviewed providers narrated a literalist
definition of informed consent, like that offered from Jerry above. More
commonly, providers would begin with a literalist definition, and then
veer off course by bringing in additional factors they considered im-
portant. As one physician shared during a Trans-101 medical workshop:
Medical providers have historically seen informed consent as giving
permission in a written way. We understand that knowledge is good
when it comes to your body and your well-being and the manage-
ment of your self. We know there is a relationship between informed
consent and autonomy. When you are talking about somebody
transitioning you want to make sure there is agency in that process.
But you also want to make sure that the person has the capacity to
make decisions about their lives. And with trans people, that be-
comes a little tricky because sometimes they don't want to hear
about the risks involved in starting hormone therapy and how that is
going to make their lives difficult.
Several inconsistencies in an informed consent model are reflected
in the quote from above. From this medical providers' perspective, he
begins by describing how informed consent is a process of giving per-
mission in a written way. It is unclear from this provider's comments
who is giving permission. But, this iteration conflicts with a principle of
informed consent in that it is often assumed to be a shared decision-
making process where patients are informed of risks and benefits and
make decisions in collaboration with a provider, rather than one person
giving something to another. Notably, this provider began with a lit-
eralist interpretation that acknowledged the value of patient autonomy,
but concluded his description by questioning the capacity for trans
people to make decisions about their lives, and within the perceived
risks of hormones. These contradictions highlight how the principle of
informed consent that prioritizes patient autonomy can become mud-
dled in clinical encounters, as medical providers wrap medical au-
thority into their definitions of informed consent; making “autonomy” a
conditional concept that is qualified by a provider's assessment of a
patient having the capacity to offer consent.
Providers wanted to ensure that their patients understood the po-
tential risks and benefits of trans medicine information offered, which is
aligned with the principle of informed consent. More often than not,
however, the modifications that providers built in to informed consent
established gatekeeping practices. For example, as Ann, a family phy-
sician suggested in assessing whether or not she would allow a trans
man who had been on testosterone for ten years and had recently
moved to a new city, to continue his testosterone shared, “I was con-
cerned about what was his level of understanding in the consent I was
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reading to him, and with him? He was nodding along but I just wasn't
sure he was really listening.” Subtly conveyed, this family physician
suggested that because her patient was potentially not listening to the
information offered, he was unable to give consent. Interactional cue,
such as nodding along, indicate that an individual is listening in a
conversation. But from Ann's feeling, the patient was not really lis-
tening. Contextualizing this particular interaction was that the patient
had been on hormones for ten years and may be well aware of the risks.
Rather than folding the patient's health history and previous experi-
ences into the informed consent process, Ann, instead questioned
whether or not the patient was paying attention, which became a tool
for her to draw on to deny the patient's request for refilling his pre-
scription.
Underlying informed consent in trans medicine is the lack of clinical
data to help providers articulate what the risks of hormone therapy may
be. Ann, and other providers were aware of this paucity of data and it
shapes how they define informed consent. As Ann further stated, “Well,
as you know, it's hard because there isn't all that much information on
the long-term risks. So usually my informed consent process is about
how there isn't much information. I focus on the changes that will occur
with hormones, rather than the risks of taking them.” For providers
who articulated a similar dilemma suggested, a work around to the
paucity of data within an informed consent process in trans medicine
was to focus on the effects of hormones, rather than the risks associated
with them.
As Ann and other providers made clear, a neat and clean definition
of informed consent becomes challenging in trans medicine because it is
difficult to uphold the basic premise that providers are able to offer their
patients information regarding the effects of trans-specific medical
treatments. As one gynecologist further elaborated during a Trans 101
workshop:
Basically we don't know what happens. The problem with proges-
terone is we don't know what the adrenal glands will do in the
conversion of that. It might lead to a lot of different things that we
don't quite understand. Adrenal suppression is one of the concerns.
Although, this is all theoretical stuff. We just don't know.
This lack of clarity on the effects of hormones leads to unease among
providers. To alleviate their discomfort, some providers lean into an
informed consent model as it offers assurances that they have done
their due diligence in informing patients of the lack of clarity in the
long-term risks, offer all of the available information, and embolden
their trans patients to make decisions about their bodies. As another
physician shared:
I am a little uneasy knowing that I don't know the long-term risks of
these drugs. And that is true of a lot of medications. Look at the rates
of depression-related drug prescriptions yet we still don't really
know much about how they change the brain or why they might
work. I think as long as I share that with patients, and write it into
the consent documents, they are also agreeing to the uncertainty.
This quote exemplifies that the basic tenet of informed consent in
offering known information is assumed to remain intact because the
provider has described the uncertainty related to hormones, while the
premise of offering information and to avoid harming patients dis-
appears in this providers’ formal consent documents. Many providers
shared that they felt a double-standard was imposed upon them to
follow an informed consent model by offering information to patients,
while the available information related to the long-term effects was
sparse.
All of the drugs used in trans medicine for hormone therapy are off-
label from FDA-approved use. This created uncertainty for providers in
knowing under what conditions they should allow access to hormones,
or how they could assure themselves that informed consent had been
achieved. To resolve the uncertainty, providers coached each other to
follow the standard protocols, or clinical guidelines, that offer guidance
s.m. shuster
on how to make medical decisions. As one nurse in a trans health policy
workshop reflected, “You have to realize contextually this is weird
medicine. We're using non-FDA approved drugs, in non-FDA approved
ways. So guidelines are really where you need to stay, especially to
avoid lawsuits.” Many of the medical providers interviewed (74%) said
they wished to avoid lawsuits by their trans clients who might come to
regret their decision to begin trans-specific medicine. Medical providers
perceived that using an informed consent model would relieve them of
possible legal action taken by trans patients, but none of the providers
interviewed had direct experiences with patients who regretted the
decision to initiate medical interventions.
Looking beneath the surface of the explicit rationale for why pro-
viders use informed consent – to inform patients of the known in-
formation related to medical interventions and to increase patient au-
tonomy – there were many inconsistencies in the logics providers used
to define what an informed consent model entailed. Uncertainty in the
clinic translated to providers feeling like they were not as equipped to
offer medical information as they may in other medical circumstances.
This exacerbated the murkiness that providers expressed about how and
when to proceed with trans-specific medicine, even when following an
informed consent model. In modifying the principles of informed con-
sent to work within the uncertainty that permeated trans medicine,
many providers substantiated their medical authority by creating con-
ditions in the process of obtaining consent that blocked trans people
from accessing trans-specific interventions. In what follows, I turn to
how providers practice informed consent in their work with trans
people, which translated to perpetuating power imbalances and dou-
bling down on their medical authority.
4.2. Practicing informed consent
Providers of trans medicine not only invoked inconsistent logics in
how they defined informed consent, they did so in their descriptions of
how they practiced informed consent. From the patient intake process,
to running blood labs, or resolving so called co-occurring conditions,
medical providers’ descriptions of practicing informed consent was a
complex and multi-faceted process that involved utilizing mental
healthcare professionals, scientific data, and social norms. Medical
providers used the language of informed consent but their stated
practices had little resemblance to the principles of this model of de-
cision-making.
In a typical patient intake process for those seeking access to trans-
specific medical interventions, medical providers will work with trans
people to determine what steps may need to be taken before a medical
procedure is initiated. Hormone therapy was the most common medical
intervention that providers discussed in their work with trans people.
While the clinical guidelines for hormone initiation differ, depending
on what professional association a provider is affiliated with, a standard
requirement across the guidelines is that trans people visit a therapist at
least once - but sometimes for up to six months - before they can begin
taking hormones. Therapists are asked to verify that a trans person is
trans, typically by using the diagnostic category of “gender dysphoria,”
and then write a letter of recommendation to the provider signing off on
a person's readiness to begin a gender transition (Dewey and Gesbeck,
2017).
Thus, the first step in most trans people's transition, utilizing hor-
mones, is marked by a contradiction as they are asked to have their
mental health evaluated before beginning hormones. 91% of the med-
ical providers said that they required a letter of recommendation from a
mental health therapist first before they would consider writing a
prescription for a trans person. As one family physician said, “For me,
asking patients to go to a therapist helps me feel confident that I am
doing my due diligence and making sure my patients are mentally ready
and stable to begin a transition.” In following up on this idea, the
physician said, “But I also want to give as much information to my
patients as possible. That's really why I use informed consent.” In light
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of their best intentions of offering information to their patients about
medical interventions, the practice of sending trans people for evalua-
tion by a therapist supersedes a patient's desire to begin hormone
therapy and casts suspicion in the medical encounter that trans people
are either mentally unstable or need to have their identities authenti-
cated by a healthcare professional.
In practicing informed consent, medical providers are not absolved
of the responsibility of health maintenance with their patients, simply
because they have shared information about the known risks, or lack of
known risks associated with long-term hormone therapy. A common
practice in trans medicine, for those on hormones, is to have annual
blood labs checked. Providers emphasized that they used scientific
knowledge to, “run these labs and identify any problems a patient may
be having.” But there is some interpretive work that is required for
these labs. Without a clear baseline for what levels of estrogen or tes-
tosterone trans individuals should have, providers sometimes used the
authority of science to justify calling into question a patient's integrity
when the levels seem a bit “off.” As one provider reflected further,
If I'm concerned about trans men because their testosterone levels
are really high, and they're taking – if I believe them - regular
doses, I'll take a look. But, we don't have anything to compare that
to. I can look at it and think it is abnormal. But, I don't know exactly
what that is going to tell me. So then I wonder if my patient is taking
more than he says he is.
In running regular medical tests to check blood levels, major organ
functioning, and levels of hormones, this provider acknowledged that
an “abnormal” test did not tell him much, but then explained away the
result by blaming the patient. This provider's response to an abnormal
test undermines a basic premise of informed consent in that using this
model should increase trust in clinical encounters. Rather than seeking
alternate explanations for abnormal tests or having a conversation with
his patients who may be taking more testosterone than is typical or
recommended, he instead mistrusts his patients. Later in the conference
workshop he shared that for those patients he “really does not trust,” he
denies them care even if they have consented to the potential risks of
hormones that are explained in the informed consent process.
Medical authority manifested through the informed consent process
in providers’ stated concerns with trans people having “co-occurring
conditions.” This phrase was used in relation to a trans person who
presented in the clinic with a mental health issue or physical condition.
Yet, this phrase assumes that being trans is, within itself, a condition.
Similar to the ways in which providers who felt a lack of trust with their
patients, sometimes providers would deny patients access to trans-
specific medicine because of the presence of a so-called co-occurring
condition, and believed that before trans patients should be allowed
access to medical interventions they must first resolve any “other”
concern. As one registered nurse who works in an LGBTQ health clinic
shared,
This is a case regarding a 50-year-old trans woman. She was a non-
smoker and had always been. Her BMI was 26. Her mom had, had a
cerebral vascular accident at 65. So my concerns for her, an absolute
contraindication would be thrombotic event for estrogen. What do
you do with somebody who has been on estrogen for a long time,
um, does not make their own estrogen and still has testicles which
are going to resume function even at low levels at her age? We
talked about the risks involved in staying on estrogen and how she
might develop cardiovascular problems. She seemed to understand
the risks involved. But, I decided we needed to stop with the pre-
scriptions. After being off of estrogen for about eight months she
became increasingly depressed and was having a lot of psychoso-
matic manifestations of her depression, such as picking.
In light of the nurse having shared information related to risks about
a cardiovascular event and the patients' understanding of those risks,
this provider withheld prescriptions because, as he said later in the Q/
s.m. shuster
A, “I was too concerned for her physical safety.” Something is amiss in
this case presentation, as this nurse shared that his patient began to
develop depression and had difficulty functioning after being taken off
of estrogen. In this instance, the nurse informed the patient about the
potential risks. But whether or not “consent” has been achieved is
murky, as this nurse discontinued the prescription in spite of his pa-
tient's desire to continue estrogen, regardless of the risks involved. In
his description, there is also a notable change in perception of who
should be involved in the decision-making process. The nurse used “we”
to indicate a collaborative model at first, but then shifted to using “I” to
describe making a decision for the patient. This nurse continued to refer
to the process used with the patient as informed consent, even after
invoking medical authority and overriding the patient's decision.
In addition to physical health risks, providers also displaced a trans
patient's autonomy when a provider perceived that their patient may
have mental health issues. As one provider explained,
I had a glimpse into a pretty significant mental health history of one
person who approached me to begin estrogen. This was someone
who got very very upset when I started to have the conversation
with them about, “Here's why I don't think we're ready to prescribe
hormones. We can go through the consent, you can go ahead and do
an intake. Or I can speak to your therapist and, if you've talked with
your therapist about your gender identity and if you've spent some
time working through that then we can talk about starting es-
trogen.” And this person really didn't want any of their mental
health capacity being evaluated before beginning estrogen.
Here, this healthcare provider insisted that her trans patient receive
a mental health evaluation before she would initiate hormones. Her
stated concern was that she believed the patient had some mental
health issues to work out before beginning estrogen. Blocking access to
hormones relegates trans voices as subsumed under providers' medical
authority in the clinic, and trans people remain beholden to medical
providers allowing them begin hormones, even when an informed
consent process has been followed. Mandating a patient to be evaluated
by a mental healthcare professional instills a normative and coercive
pressure within the clinic for trans people to be mentally healthy before
they are enabled to access trans-specific medicine. This way of thinking
about trans people's access to hormones also prioritizes mental health
over gender identity-based concerns, while assuming that one can hold
off on their gender-based needs until their mental health issues have
been attended to.
The power differentials between trans clients and providers is
brought to the surface in negotiating informed consent is in how pro-
viders discussed working with non-binary trans people, or those who
understand their gender identities as neither women nor man, but
something outside or beyond these categories. In these instances, pro-
viders asserted their medical expertise about bodies onto gender-based
identities and demanded that trans people comply within a gender
normative identity – as trans women or men. To alleviate the un-
certainty of how to work with patients who are gender nonconforming,
many providers have taken the stance that they are only willing to do
interventions if patients conform to gender norms (shuster, 2018). For
example, when asked in a Trans 101 workshop how to work with
people who desire to keep an androgynous appearance but utilize
hormones, a provider responded,
I look at this in two ways. First of all I say, “There is no way I can tell
you what's going to happen. I have no way to predict that for you at
all.” The second piece of this is I will only work with someone who is
androgynous but is not quite ready to say, “I'm ready to go on
hormones, let's do it.” I get them started on a low dose and it usually
works fine. And their brain catches up with everything that is
happening in therapy, and with support. And that's great.
Here, this provider iterated an understanding of trans people as only
those who desire to move from woman to man or man to woman as an
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Social Science & Medicine 226 (2019) 190–197
“authentic” expression of trans identification. He shared with the au-
dience that he will go through the informed consent paperwork with all
people seeking hormones, but if in his estimation, they are not ready to
“go all the way,” meaning that they do not identify as either women or
men or want to try out hormones but remain uncertain if they will want
to remain on hormones for a lifetime, he will send them back to a
therapist for extensive counseling and will not initiate hormones until
they identify within a binary gender and express certainty about the
decision to take hormones. This disregard for non-binary trans people's
agency in initiating hormones conflicts with the informed consent
model and enables providers to exert power over trans people's bodies,
and their self-understandings of gender.
Not all providers who practice informed consent expressed mistrust
in their trans patients or perpetuated healthcare inequalities by un-
dermining their patient's agency. Some providers readily recognize the
unequal power that exists in medical encounters and seek opportunities
to level these differences. At one workshop on gynecological care for
trans men, a provider reminded audience members, “As far as pap tests
go, we follow the standard for cis women. It is not uncommon for them
to say, “No one has ever touched that place ever with anything.”
They're not lying. I believe them, and I encourage you to.” This provider
went on to describe how informed consent can develop better re-
lationships with trans patients because, from his perspective, it built
more trust.
Other providers also described how practicing informed consent
enabled them to work around the gatekeeping practices that infuse
trans medicine. Mental healthcare professionals, in particular, were
keen to explain how practicing this model of decision-making could
address the mandate for therapy before accessing hormones. As Lisa
said:
I will bring with me, to our one mandatory therapy session, a pre-
written letter that says you are giving your informed consent. When
a client comes in to get that letter from me, the first thing I do is sign
it and show them - this is your letter, this is me signing, there is
nothing you can do that will result in you leaving this office without
this letter. Now, having said that, let's talk about some stuff. And
then they leave with their letter, and that accomplishes my short
term goal. My long-term goal is to make my spot in the chain of
events obsolete. My long-term goal is to disappear from that process.
So that the client goes directly to the doctor and gets what they
need.
Providers who found strategies to work around the gatekeeping
practices that are built into the structure of trans medicine, ironically,
are actually practicing informed consent in a manner consistent with
the tenets of this model of decision-making. They offered glimpses of
possibilities for how informed consent can a collaborative process and
patient-driven decision-making in clinical encounters. But, for the ma-
jority of medical providers of trans medicine interviewed for this study
and observed during healthcare conferences, they subverted the tenets
of informed consent by using the rhetoric of informed consent while
maintaining a paternalistic medical model in their clinical encounters
with trans people.
As this section demonstrated, there is still a tendency for providers
to think of themselves as the bearers of knowledge in working with
trans people, while they perceive that their trans patients are simply
passive recipients of medical treatment. This is striking in that there is
still very little research on the long-term effects of trans-specific treat-
ments, and many providers working in this area have little experience
working with this particular population. Providers gloss over this fea-
ture of trans medicine to maintain medical authority in their clinical
encounters with trans people. Simply stated, medical providers perform
informed consent when they use the rhetoric of informed consent, but
continue to inflect their power and medical authority to override trans
people's decisions about their health and lives. In so doing, providers
uphold their medical authority while perpetuating healthcare
s.m. shuster
inequalities; making moot the consensual aspects of an informed con-
sent process.
5. Conclusion
In contemporary US medical decision-making in clinical encounters,
most providers follow an informed consent model. Scholars (e.g.
Corrigan, 2003) have raised concerns with the widely-held assumption
that informed consent is an ethical panacea and resolves concerns
raised by the public that medical providers hold too much power over
people's health and lives. In light of these concerns, much of the em-
pirical scholarship on informed consent has focused on scientific re-
search related to surgical procedures or pharmaceutical drug trials. My
research has begun to address this gap by examining how providers
understand and practice informed consent in their clinical encounters
with trans people.
Trans medicine is well positioned as a litmus test for how rigorously
the principles of informed consent can be sustained, given the murky
realities of provider's authority in contemporary medicine and parti-
cularities of this health arena. As previously discussed, trans medicine is
marked by uncertainty in best practices and the long-term effects of
hormones, shaped by providers' perspective in the truth of a two-and-
only two gender binary normative system, and skepticism that provi-
ders hold about their trans patients disclosing health information or
having the capacity to make autonomous decisions. Here, I demon-
strated how rather than relying on the potential strengths of informed
consent to shore up these various concerns, providers often superseded
patient autonomy. Providers of trans medicine doubled down on their
expertise and authority and minimized patient self-determination, all
while insisting that they used informed consent. It is in this disjuncture
between theory and practice that providers of trans medicine are per-
forming informed consent, while their actions resemble a paternalistic
medical decision-making model.
Many providers found strategies to work around the uncertainty
that permeates trans medicine, given the lack of clinical data on the
long-term risks of hormones. Even if their patients voiced desires to
begin or continue hormones, regardless of the potential risk, providers
came to the conclusion that it was not “worth it” to expose their pa-
tients to uncertain risks. Elsewhere in the scholarship on uncertainty,
gender, and risk, these findings are not replicated. For example, in their
study on contraception counseling, Littlejohn and Kimport (2017)
found that clinicians highlighted the positive effects of contraception
while minimizing the likelihood of negative side effects. As these au-
thors suggest, providers “framed health risks as controllable even
though uncertainty about what happened to the patient remained” (p.
450). Furthermore, contraception is typically couched as a public
health intervention (Littlejohn and Kimport, 2017) in service to the
benefit of the general public. In contrast, trans medical interventions
continue to be understood as both uncertain in the long-term risks, and
the benefits of which remain contested in broader public spheres. Many
trans people have articulated the benefits of using hormones for their
overall health and well-being (see Dewey, 2015). As I highlighted,
when providers and patients came to a different set of conclusions
about whether or not to stop or continue hormones, providers used
these moments to assert their expertise and authority and deny their
patients access to trans medicine.
Underpinning trans medicine is the inescapable fact that providers
are working within gender-specific medicine. Gender normative ex-
pression becomes a lens through which providers make distinctions of
‘good’ and ‘bad’ patients. In other medical arenas, scholars have found
that gender bias brought into clinical encounters hinders the informed
consent model (see Stagg-Taylor, 2013). Thus, the findings presented
here build on the scholarship on gendered medicine by showing how
providers of trans medicine bring bias into the clinical encounter with
their patients, and perpetuate healthcare inequalities through per-
forming informed consent. For those patients who do not uphold the
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Social Science & Medicine 226 (2019) 190–197
expectations for being a “good” normative binary compliant patient,
providers described how they would inform their patients about the
known risks of gender-affirming medicine, and then proceed by as-
serting their authority through gatekeeping practices and difficult to
achieve mandates foisted upon their trans patients.
One loophole in the bioethical principles of, and legal precedent for,
informed consent that becomes apparent in trans medicine is when a
provider determines that an individual does not have the capacity to
offer consent. Established in Sard v Hardy (1977), providers are au-
thorized to adjudicate the capacity and competence of their patients.
This exception is usually reserved for medical emergencies, but as
providers of trans medicine described, they invoke this exception when
they believe their patients are lying to them or are not quite ready to
begin medical interventions. Justifying their rationale was the subtle
ableism that providers brought into the clinical encounter with trans
people. In asking their patients to resolve mental health issues first, or
referring to mental health issues as a “co-occurring” conditions, makes
clear that providers think of their trans patients as not entirely mentally
healthy and therefore, will always treat their patients with suspicion on
the question of capacity to make autonomous decisions. These medical
practices are at odds with the principles of informed consent and de-
monstrate how medical providers use the rhetoric of informed consent,
but revert back to paternalistic medicine where “doctor knows best.”
Insidiously, they do so under the auspice of an informed consent model.
Taken together, the case of trans medicine sets the stage for ex-
amining how providers are not willing to relinquish their medical au-
thority in clinical encounters. Many scholars (e.g. Timmermans and Oh,
2010) have suggested that medical authority is waning with the in-
troduction of more stakeholders in medicine. The findings presented
here point to new opportunities for providers to uphold and assert their
medical authority in clinical encounters. Additional scholarship on how
informed consent is performed in the daily life of the clinic is needed to
fully address whether what is demonstrated here is particular to the
gender-specificity of trans medicine, the bias and stigma surrounding
trans people that is labeled and codified as a mental health issue, or if
the findings reflect how underrepresented groups, in general, are used
by medical providers to increase their power in a landscape that is
becoming less welcoming to paternalistic models of care that prioritize
doctor's knowledge, expertise, and authority. As I have shown, in-
formed consent is said to be used frequently, but is understood differ-
ently across providers, and presents a new and covert mechanism for
providers to hold onto and assert their medical authority.
Acknowledgments
I wish to warmly thank the senior editor, Stefan Timmermans, and
Zack Griffen, the editorial assistant, the anonymous reviewers, Ellen
Lamont, and Clare Forstie for their generous feedback and thoughtful
comments on this manuscript.
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