genderlawjustice.berkeley.edu file · web viewusing a cultur al studies ap proach to analyz e media...
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Author 1:
Jaydi Funk 900 Gold Dust CircleBillings, MT 59105
Home: 406.413.5157, Work: 888.439.8953, Email: [email protected] (email preferred)
Dr. Funk is a graduate of the University of California at San Francisco. Upon completing
a residency at Cedars-Sinai Medical Center and publishing research on pediatric dosing, Dr.
Funk focused attention on the construction of gender in medicine and issues of equity in the
pharmacological sciences. In addition to overseeing a large scale mixed-methods research project
investigating trans*+ privacy issues in healthcare (publication forthcoming, 2020), Dr. Funk
serves as pharmacist for several long-term medical care facilities.
Author 2:
Sylvia Blaise Whelan (Blaise Vanderhorst)7725 Gateway #1404Irvine, CA 92618
Home: 661.616.8575, Work: 559.321.4798, Email: [email protected] (email preferred)
Ms. Whelan is a graduate of the University of California, Santa Barbara, and the Dale E.
Fowler School of Law at Chapman University in Orange, California. An advocate of LGBTI
rights, Ms. Whelan previously advocated for gender-identity based legal sex in an article
published by the Harvard Law and Policy Review. Currently Ms. Whelan is an attorney
practicing civil and workers' compensation law in California.
Author 3:
Steven Seth Funk900 Gold Dust CircleBillings, MT 59105
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Home: 406.413.5158, Work: 406.657.2348, Email: [email protected] (email preferred)
A graduate of the University of California at Los Angeles, Dr. Funk is the Assistant
Director of the Undergraduate Honors Program at Montana State University, Billings, where he
also lectures on Critical Media Literacy, Research, and Communication. His recent book,
Promoting Global Competencies through Media Literacy, features a collection of research on
emancipatory assessment as a means toward increasing social justice through media literacy. Co-
authored with partner Dr. Jaydi Funk, Dr. Funk’s current book project is a monograph exploring
the results of their large scale mixed-methods research project investigating trans*+ privacy
issues in healthcare, and it will be published (Cambridge Scholars Publishing) in early 2020.
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ABSTRACT
As other countries continue to expand cultural, medical, and legal distinctions of gender,
cultural, medical, and legal practices in the U.S. often reify the gender binary. Subsequently, this
article underscores the need for a critical interdisciplinary examination of the gender binary and
its effects on the (re)production of gender stereotypes in media, within the medical sciences, and
in law. By exploring the cultural, medical, and legal reification of the gender binary, we argue
that the U.S. healthcare system should begin to acknowledge the spectrum of gender and that
medical patients must have increased legal rights to non-disclosure and privacy.
Keywords: Gender, Gender Identity, Transgender, Critical Media Literacy, Healthcare
Privacy, Gender Medicine, Legal Gender, Gender Law, Non-disclosure, Sex
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Trans*+ and Intersex Representation and Pathologization:
An Argument for Increased Medical Privacy
Introduction
There is a space where narrative, science, and law overlap, and it is within this space that
the ideas in this article have been comminglingof this article have comingled for some time.
Positioning medical and legal data within a cultural studies framework, this article seeks not only
to further the dialogue about trans*+ and intersex individuals, but also to increase social justice
for gender autonomy across the spectrum of gender.
Our sense of personhood is a complex constellation, involving our relationship with
culture, healthcare, and society’s methods of governance. Through a cursory glance at the
contemporary media landscape, one may surmise that much progress has been made regarding
the rights to privacy of trans*+ and intersex individuals. Using a cultural studies approach to
analyze media representations of trans*+ and intersex individuals, however, we find that the
privacy of these individuals is seldom honored while media narratives often reinforce the stigma
associated with non-cisgender1, binary identities. According to Butler2, one’s sense of
personhood is based upon whether the individual is deemed to be identifiable: 1 S. Brydum. “The True Meaning of the Word Cisgender.” The Advocate. (2015). Posted July 31 2015. At
http://www.advocate.com/transgender/2015/07/31/true-meaning-word-cisgender2. J. Butler. “Doing Justice to Someone: Sex Reassignment and Allegories of Transsexuality,” GLQ: A Journal of
Lesbian and Gay Studies 7, no.4 (2001): 621-636, at 622.3. Ibid. 2
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The very criterion by which we judge a person to be a gendered being, a criterion
that posits coherent gender as a presupposition of humanness, is not only one that,
justly or unjustly, governs the recognizability of the human but one that informs
the ways we do or do not recognize ourselves, at the level of feeling, desire, and
the body, in the moments before the mirror, in the moments before the window, in
the times that one turns to psychologists, to psychiatrists, to medical and legal
professionals to negotiate what may well feel like the unrecognizability of one’s
gender and, hence, of one’s personhood.
Importantly, as Butler3 argues, one’s gender identity is neither internal nor external, neither
constructed nor perceived; rather it is complexly linked with private and public spheres, and
more critically, it is the most basic aspect of personhood by which others, as well as we, assign
us, and ourselves, identities as human beings.
As we progress into the 21st century, an era marked by instant communication and the
neologisms of new genders and sexualityies that challenge ideologies of bygone days, we must
begin to ask if we are ready to challenge what may be one of the most influential ideologies
functioning today: the gender binary of the American healthcare system, specifically regarding
its relationship to patient privacy. Reinforced through Western cultural and religious
normsatives, reified through medical practices, and policed by the legal system, the binary
gender system in healthcare operates as, arguably, the single most effective ideological state
apparatus4. The binary pervades every aspect of society, sets up varying matrices of power and
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4 L. Althusser. “Ideology and Ideological State Apparatuses: Notes towards and Investigation,” Lenin and Philosophy and Other Essays, (1971), at https://www.marxists.org/reference/archive/althusser/1970/ideology.htm
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production, and has generally been considered “natural” until recent feminist, humanist, and
post-modern critiques have suggested otherwise. By exploring the cultural, medical, and legal
aspects of the gender binary, we argue that medical patients must have increased rights to non-
disclosure and privacy.
I. Terminology: Trans*+
As we explore the privacy discourse surrounding non-normative gender identity labels
while trying to validate the spectrum of gender identities that exists, we will use the term
trans*+. SJ Miller5 explains:
While some activists draw on the use of trans (without the asterisk and/or the plus
sign), which is most often applied to trans men/women, the asterisk with the plus
sign more broadly references ever-evolving non-cisgender gender identities,
which are identified as, but certainly not limited to, (a)gender, cross-dresser,
bigender, genderfluid, genderf**k, genderless, genderqueer, non-binary, non-
gender, third gender, trans man, trans woman, transgender, transsexual, and two-
spirit. How the term trans*+ continues to take form will evolve as identities and
theories morph in indeterminate ways.
The recent increase in trans*+ representation among popular media in the U.S., and the ensuing
debates popularized in media in the U.S. over bathroom laws and health insurance coverage have
made now the appropriate time to begin to question what has been long taken for granted as a
fundamental aspect of our culture.
5 S.J. Miller. “Trans*+ing Classrooms: The Pedagogy of Refusal as Mediator for Learning,” Social Sciences 5, no.3 (2016): 1-17, at 2. DOI: 10.3390/socsci5030034
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II. A Cultural Studies Approach to Gender
When “gender based medicine” first became popular, the American media landscape of
the 1990s undulated with waves of feminist progress and slopes of conservative backlash. During
this era, John Gray’s Men are from Mars, Women are from Venus6, portraying men and women
as “opposites,” was a best seller. This time was fraught with political arguments about “gay
rights,” while RuPaul’s drag was considered scandalous on the pages of Sassy and Jane
magazines. During this time, there was no distinction between sex as a biological marker and
gender as a set of culturally defined performances among the general American populace;
however, academics in the fields of cultural studies, feminist (and humanist) theory, and queer
theory were beginningbegan to challenge the “naturalness” of the sex/gender binary.
Though more than 40 years have passed since the rise of Cultural Studies, American
popular media continues to reinforce the 1960’s popular 1960’s ideological normsatives: binary
gender and heteronormativity prevail7. Even when portraying LGBT*+ individuals, popular
media still reliesy upon binary gender roles, ableism, classist portrayals of the working
classclassism, Protestant values, sexism, white privilege and colorism (even within shows
targeting audiences of color), and other dominant identity markers. The dominance and
predominance of these identity markers depicted in popular media are so ubiquitous that it can be
easy for trans*+and intersex individuals to see their positionalities as having little significance in
the social order.
A. Critical Media Literacy
6Ibid. 7S.S. Funk, D. Kellner, & J. Share. “Critical Media Literacy as Transformative Pedagogy,” Handbook of Media Literacy Research in the Digital Age. (2016). Hershey, PA: IGI Global.
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A Cultural Studies approach to media literacy, called Critical Media Literacy, seeks to
highlight the construction of normality and to challenge the myth of neutrality circulated around
media. Critical Media Literacy examines the ways in which media position audiences and
participants reproduce the dominant ideologies that perpetually privilege certain identity markers
while disadvantaging others8. For a critical consideration of the rights of trans*+ and intersex
individuals, it is imperative that we review the media landscape in which non-binary people have
been cast as duplicitous “freaks” who are deceiving the American public for the purpose of
forwarding a liberal political agenda9. In is within this mediated public that the struggle for
trans*+ and intersex rights is being cast for a national audience, an audience comprised of
healthcare providers, mental healthcare workers, and lawmakers who are not immune to the
influences of popular culture.
B. Trans*+ Privacy in Media
While trans*+ individuals have gained more media coverage and acting roles during the
past decade than ever before, the extent to which this increased representation has increased civil
rights and quality of life for trans*+ and intersex individuals must be questioned. While media
representation of intersex individuals remains null, the trans*+ discourse seems to have exploded
in recent years. The popularity of Transparent, I Am Cait, Orange is the New Black, and Glee
seems to point to a new trend in television - a defining moment for trans*+ individuals to let their
voices be heard. Yet, while a few new media representations do cast trans*+ actors in trans*+
roles, most cast cisgender actors to play the part. Moreover, these roles continue to be largely
88. Ibid. 99. A. Kane. “Freaks for a New Generation: ‘I’m Non-Binary Transgender, so I Don’t Identify as Male or Female.’”AmbroseKane.com. Posted March 30, 2016, at http://www.ambrosekane.com/2016/03/30/freaks-for-a- new-generation-im-non-binary-transgender-so-i-dont-identify-as-male-or-female/
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predicated upon the trans*+ness of a character, rather than casting a character as a physician,
teacher, carpenter, etc., who happens to be trans*+. And more problematic than the trans*+
experience being portrayed through the cisgender lens is how the crux of the trans*+ character’s
narrative commonly hinges upon whether they will get “the surgery,” as if trans*+ people require
any surgery at all, and, as if they have neither bodily integrity nor the right to privacy.
The entertainment news industry has long taken for granted that it can interrogate trans*+
stars about their genitalia and sex lives in a manner that most viewers would recognize as
invasive if the questions were directed towards cisgender actors. Ironically, because of the
normalization of this media dialogue, Caitlyn Jenner herself contributed to the abnegation of
privacy of the trans*+ individual in her show, I Am Cait. As Caitlyn Jenner discusses with Dr.
Marci Bowers the intricacies of gender affirmation or “reassignment” surgery, she gives the
largely cisgender audience what is has come to expect over the years - the answer to what she
has “down there”10. The cisgender perspective that is accounted for in all major American media
conglomerates, referred to as the “cisgender gaze” by Hilton-Morrow and Battles11, has come to
expect the trans*+ character to answer this question to defend their trans*+ness to a cisgender
audience. As Hilton-Morrow and Battles12 explain:
All of these questions [about trans*+ genitalia] focus on areas of the body
generally considered private but associated with deep--seated cultural
assumptions of what it means to be a man or a woman. By the mere adoption of
1010. M. Bonner. ‘I Am Cait' Recap: Caitlyn Jenner Considers Gender Confirmation Surgery, Meets with Surgeon (2016). Athttp://www.usmagazine.com/entertainment/news/i-am-cait-recap-caitlyn-jenner-considers-gender-confirmation-surgery-w2030591111. W. Hilton-Morrow & K. Battles. Sexual Identities & the Media: An Introduction (2015). New York, NY: Routledge, at 240.1212. Ibid.
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the identity of trans[gender], people find themselves under the powerful and
disciplining cisgender gaze.
Regularly, genital surgery is treated among mainstream media as the final “litmus test” one must
pass in order to be considered “fully” transitioned. Thus, the trans*+ identity is both
pathologized (something needs to “fixed”) and deemed reckless (the medical risks are
emphasized while the patient is criticized for being willing to take such risks).
As ABC news reported Chaz Bono’s gender transition in 2012, the news outlet called his
possible genital surgery the “final step in his transition from female to male”13. Moreover, the
news site detailed his trepidation about genital surgery and gave the (overwhelmingly cisgender)
audience a detailed account of how taking testosterone affected his sex life14. This invasive line
of questioning perpetrated by media is one generally directed at trans*+ individuals and then
repeated by sometimes well-meaning cisgender people because their cisgender privilege has
normalized their right to privacy concerning their own bodies while simultaneously justifying
their curiosity to know about bodies not conforming to the cisgender male/female binary.
To reveal the extent to which cisgender privilege disadvantages trans*+ individuals,
trans*+ activists Janet Mock15 reversed roles with cisgender reporter Alicia Menendez, by asking
questions such as, “Tell me about when you first came out as cisgender,” and, “What is the one
thing viewers need to know about cis people?” The Mock/Menendez interview effectively
underscores how trans*+ individuals are generally regarded as spectacles to be studied for
1313. S.D. James. “Chaz Eyes Risky Surgery to Construct Penis”. ABC News. Posted January 6, 2012, at http://abcnews.go.com/Health/transgender-chaz-bono-seeks-penis-genital-surgery-risky/story?id=152998711414. Ibid. 1515. J. Mock. “Why I Asked Alicia Menendez about Her Vagina & Other Invasive Questions”. JanetMock.com. Posted May 1, 2014, at http://janetmock.com/2014/05/01/alicia-menendez-invasive-interview-demonstration/
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entertainment, rather than as autonomous human beings with the right to privacy. This
discrimination against trans*+ people is often defended by citing how the trans*+ “condition” is
one that has been medicalized and pathologized. As such, cisgender people may defend their
intrusiveness as being inspired by the impulse, or innocent curiosity, to understand this medical
or mental “condition.”
II. Pathologization of Trans*+ and Intersex in Media and Medicine
The media frontier for representations of intersex individuals remains a vast space of
silence, despite lively contemporary debates over intersex rights16. Since Money, Hampson, and
Hampson’s “Optimal Gender of Rearing Model”17 was introduced at Johns Hopkins in the 1950s,
countless intersex individuals have been medically sterilized and forced to conform to the gender
binary18. A naturally occurring state that adds variety to the human genome, intersex compares
with trans*+ as both have been pathologized for the sake of upholding the construction of the
gender binary.
In contrast to the increasing frequency with which trans*+ characters are featured in
popular media, intersex characters (or mainstream discussions of intersex rights) are not
represented in media. Unfortunately, the media silence about intersex individuals may propagate
the belief that there is something “wrong” with intersex individuals, that something “needs to be
fixed,” and as such, that they should be rendered invisible. These myths, promulgated by media
and disseminated into the public’s vernacular, are created, and/or reinforced by, medical and
1616. A. Dreger, & A. Herndon. “Progress and Politics in the Intersex Rights Movement: Feminist Theory in Action,” GLQ: A Journal of Lesbian and Gay Studies 15, no.2 (2009): 199-224.1717. J. Money; J. Hampson, & J. L. Hampson. “Imprinting the Establishment of Gender Role,” Archives of Neurology and Psychiatry 77 (1957): 333-36. 1818. A. Tamar-Mattis. “Exceptions to the Rule: Curing the Law's Failure to Protect Intersex Infants,” Berkeley Journal of Gender, Law, & Justice 21, no.1(2006): 59-110.
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mental healthcare providers who serve in positions of gatekeepers to trans*+ and intersex
individuals, causing the myths of pathology to become self-prophesying, as they move cyclically
from professional communities through media, and back to professional communities acting as
gatekeepers to care and legal rights. The very existence of diagnoses for gender expansive
individuals in the Diagnostic and Statistical Manual (DSM), published by the American
Psychological Association (APA) underscores the pathologization. Breaking this self-feeding
loop will be a critical step in protecting the rights of trans*+ and intersex individuals’ privacy,
autonomy, and bodily sovereignty.
A. Medicine: Healthcare and Gender
Contemporary research for the rights of trans*+ and intersex individuals has argued that
the pathologization of trans*+ and intersex individuals by the American Psychological
Association (APA) and the American Medical Association (AMA) caused a cultural ripple effect
of stigmatization19. Garland-Thomson20 argues, “The medical commitment to healing, when
coupled with modernity’s faith in technology and interventions that control outcomes, has
increasingly shifted toward an aggressive intent to fix, regulate, or eradicate ostensibly deviant
bodies.” The way in which the APA and AMA criminalized and pathologized these bodies has
had a profound effect on not only the way in which healthcare professionals view and treat
trans*+ and intersex individuals, but also on how these individuals are imagined and policed by
the general population. This general stigmatization leads to myriad negative health outcomes.
1919. S.S. Funk & J. Funk. “Transgender Dispossession in ‘Transparent’: Coming Out as a Euphemism for Honesty”. Sexuality & Culture 20, no.2 (2016): 1-17. DOI: 10.1007/s12119- 016-9363-02020. R.M. Garland-Thompson. “Integrating Disability, Transforming Feminist Theory”. Feminist Disability Studies14, no. 3 (2002): 1-32, at 14. at http://www.jstor.org/stable/4316922
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According to the Institute of Medicine21, “If one examines the historical trajectory of
LGBT[QIA] populations in the United States, it is clear that medical stigma has exerted an
enormous and continuing influence on the life and consequently the health status of LGBT[QIA]
individuals.” While medical facilities are traditionally known to “do no harm,” the mental and
medical diagnoses of trans*+ and intersex may have eroded these individuals’ right to privacy
much in the same way that people with disabilities are often treated as though they lack a fully-
realized sense of personhood22. As medical and legal professionals in the U.S. continue to
promote the myth of the gender binary, the ramifications of this gender policing are not merely
theoretical or cultural. Those acting in the position of the gatekeepers of gender can earn hefty
profits23 while trans*+ and intersex individuals (and, often, their guardians) try to, or are coerced
or forced to, conform to the binary. This has created complex systems and criteria that one must
navigate to begin the transition process and/or secure legal forms of identification24,
employment25, benefits and medical procedures26.
Discrimination against trans*+ and intersex individuals does not end once they have
successfully maneuvered through the APA requirements27 to “qualify” for medical treatment.
2121. Institute of Medicine. “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding.” National Academies Press, Washington, DC. at http://www.ncbi.nlm.nih.gov/pubmed/220136112222. B. Hughes. “Disability Activisms: Social Model Stalwarts and Biological Citizens. Disability & Society 24, no. 6, (2009): 677-88; M. Agmon; A. Sa’ar, & T. Araten-Bergman. “The Person in the Disabled Body: A Perspective on Culture and Personhood from the Margins.” International Journal for Equity in Health 15, (2016): 147-158. DOI 10.1186/s12939-016-0437-22323. A. Jackson. “The High Cost of Being Transgender.” CNN.com, Posted July 31, 2015. at http://www.cnn.com/2015/07/31/health/transgender-costs-irpt/24. T. Milan. “Transgender Women Denied Updated License Photo at West Virginia DMV.” (2014). GLAAD. Posted July 10 2014. at http://www.glaad.org/blog/transgender-women-denied-updated-license-photo-west-virginia-dmv25. M. E. Brewster; B. L. Velez; A. Mennicke, & E. Tebbe, E. “Voices from Beyond: A Thematic Content Analysis of Transgender Employees’ Workplace Experiences.” Psychology of Sexual Orientation and Gender Diversity. 1, (2014): 159 -169. at http://dx.doi.org/10.1037/sgd000003026. World Professional Association for Transgender Health, Inc. “Standards of Care.” (2011). at http://www.thisishow.org/Files/ soc7.pdf27. American Psychological Association. “Guidelines for Psychological Practice with Transgender and Gender Nonconforming People.” American Psychologist 70, no.9 (2015): 832-864. DOI: 10.1037/a0039906
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Unfortunately, the medical community is often one place where trans*+ and intersex individuals
suffer the most, from microaggressions28 to egregious forms of discrimination29, treatment which
may leave cisgender perpetrators feeling justified under the current medical and legal practices
and guidelines. For these reasons, we believe the new frontier of the struggle for gender equity
will involve dismantling the binary language of medical practitioners and the legal structures
which buttress them.
B. Challenging the Binary in Medicine
Navigating the healthcare system and finding the appropriate care is daunting, even more
so when an individual seeking medical care is constantly faced with inappropriate questions.
Before an individual is even seen in a doctor’s office, a medical history form must be completed.
At its surface, this form may not seem prejudiced against trans*+ or intersex individuals, but
simply checking the traditional “male” or “female” box will not suffice. Many such prejudices
exist and create “barriers to accessing timely, culturally competent, medically appropriate, and
respectful care30”.
What would medicine look like if we eliminated that check box on medical intake forms?
How important is it to know a patient’s sex as listed on their birth certificate? What about their
gender identity? What information is critical for treating a patient and will it be the same in all
cases? In other words, how much do we need to know about your privates and what is your right
28. A. A. Singh; D. G. Hays, & L. Watson. (2011). Strategies in the Face of Adversity: “Resilience Strategies of Transgender Individuals.” Journal of Counseling and Development (2011), 89: 20-27. DOI 10.1002/j .1556-6678.2011.tb00057.x29. J. Bradford; J. Xavier; M. Hendricks; M. E. Rives, & J. A. Honnold. “The Health, Health-Related Needs, and Lifecourse Experiences of Transgender Virginians.” Virginia Transgender Health Initiative Study Statewide Survey Report (2007). at http://www.vdh.state.va.us/epidemiology/DiseasePrevention/documents/pdf/THISFINALREPORTVol1 .pdf3030. D. Strousma. “The State of Transgender Health Care: Policy, Law, and Medical Frameworks.” American Journal of Public Health, 104, no. 3 (2014): 31-8, at 31.
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to privacy? To start answering these questions, we need to discuss what is essential to know
about medications, anatomy, and lab work to treat patients properly; but first, we need to review
the prevailing ideological construction in Western medicine today: gender-based medicine.
C. Gender-Based Medicine
The notion of “gender-based medicine” has only recently come under scrutiny, as many
in the health sciences are becoming more vocal about the limitations of a binary gender system in
healthcare31:
On July 22, 1993, the FDA published the Guideline for the Study and Evaluation of
Gender Differences in the Clinical Evaluation of Drugs, in the Federal Register [58 FR
39406]. The guideline was developed amidst growing concerns that the drug
development process did not provide adequate information about the effects of drugs or
biological products in women and a general consensus that women should be allowed to
determine for themselves the appropriateness of participating in early clinical trials.
While the FDA’s intent was to capture data and provide more equitable and effective care to
everyone, the creation of “gender-based medicine” may have only served to propagate myths
about the “differences” between men and women rather than to increase medical efficacy for
everyone. Moreover, the term “gender” seems to have become common nomenclature for what,
clinically and historically, has been called “sex.”
After searching through Pub Med and Academic Search Premier for peer-reviewed
journal articles on dosing, (terms: gender based dosing, intersex dosing, intersex medicine,
31. U.S. Department of Health and Human Services. “Evaluation of Gender Differences in Clinical Investigations - Information Sheet”. (2016). U.S. Food and Drug Administration. Posted January 25, 2016. At http://www.fda.gov/RegulatoryInformation/Guidances/ucm126552.htm
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narrow therapeutic index drugs, pharmacogenomics, pharmacokinetics, sex based dosing,
transgender based dosing, transgender medicine) it is apparent that there is a gross lack of
research in several areas. Firstly, there is a lack of understanding of terminology. The terms
“gender” and “sex” are used incorrectly in many medical research articles32. Even in articles
purportedly addressing sex and gender specifically in medicine, the two terms are conflated33.
The term “sex” should be used to describe a person’s genitals (what they are born with) and the
hormones that their bodies produce without medical treatment, such as hormone replacement
therapy. Moreover, there are more than two sexes, as the spectrum of intersex individuals makes
clear. The term “gender” should be used to describe a range of characteristics that makes one feel
masculine or feminine. Sex and gender are not always synonymous. Some authors of recent
studies even state that they understand that sex should be the term used, yet they continue to use
“gender” instead because it is the more commonly used term34. This blatant disregard for using
inclusive terminology further reifies the gender binary and allows for medical professionals
(some of whom have never had diversity training) to ignore the spectrum of gender presented in
their patients and to normalize the cisgender condition35.
Secondly, no research investigating the medical treatment of any condition other than
hormone therapy in these populations has been published. Scores of articles address whether
intersex or trans*+ individuals should receive hormone therapy, and how they should prove their
eligibility for it by meeting unnecessary criteria. None examines the dosing and/or clinical
32. E. Tanaka. “Gender-related Differences in Pharmacokinetics and Their Clinical Significance.” Journal of Clinical Pharmacy and Therapeutics 24 (1999): 339-346.3333. A. McGregor & E. K. Choo. “The Emerging Science of Gender Specific Medicine.” Rhode Island Medical Journal 98, no. 6 (2013): 23-26.3434. C. C. Tate; J. N. Ledbetter, & C. P. Youssef. “A Two-Question Method for Assessing Gender Categories in the Social and Medical Sciences.” Journal of Sex Research 50, no. 8 (2013): 757-776. DOI: 10.1080/00224499.2012.6901035. E. Eckhert. “A Case for the Demedicalization of Queer Bodies.” Yale Journal of Biology and Medicine 89: 239-
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significance of treatments for common medical conditions, such as diabetes, hypertension, and
hyperlipidemia.
Lastly, myriad articles do address issues such as whether intersex and/or trans*+
individuals should be allowed to compete in the Olympics, the higher HIV incidence among
Black transgender women, and the “dilemma” of where to house trans*+ prisoners. The
normalization of the cisgender condition has allowed the healthcare sciences to effectively ignore
studying trans*+ or intersex individuals for any reason excluding to police their adherence to
hormone replacement therapy.
Trans*+ antipathy in healthcare is best illustrated by the number of studies addressing
“sex” differences in pharmacokinetic responses to medications for trans*+/intersex individuals.
It is zero. To date, published medical studies have only studied hormone replacement therapy.
Little data are available to show what happens to a body as it transitions from one sex to another,
or from an undefined sex to one sex. Rather than examining what happens to a body affected by
these medications to maintain the desired gender presentation to which a particular patient
identifies, research has merely examined whether hormone treatment can be safely administered,
or whether patients are in compliance36. Unfortunately, this trajectory of research only reinforces
the notion of medical providers as gatekeepers.
36. J. Weinand, & D. Safer. “Hormone Therapy in Transgender Adults is Safe with Provider Supervision: A Review of Hormone Therapy Sequelae for Transgender Individuals” Journal of Clinical and Translational Endocrinology 2, no.2 (2015):55-60.
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The studies examining the safety of hormone therapy37 among trans*+ individuals list the
possible side effects of hormone therapy as cardiovascular disease38 and increased cholesterol39.
It is important to note that these side effects are not limited to the population of individuals
taking hormone therapy to transition; rather, they are the same possible side effects facing
cisgender individuals supplementing or replacing their own hormone production. In order to treat
trans*+ and intersex patients effectively, we must begin to study hormone levels, body fat
changes, gastric motility, and muscle redistribution, so that we can understand how bodies
respond at various stages of transitioning. These types of studies will change how we practice
medicine for all individuals. Hormone replacement therapy is a treatment that benefits many
genders and all types of bodies. By interrogating common assumptions about the way natal sex
marker affects one’s responses to medications, we may begin to create safer and more equitable
healthcare practices for people of all genders.
D. Sex and Gender: Do They Matter in Medicine?
Gender appears to be medically significant because hospital rooms are separated by
gender, vitamins and medications are frequently marketed to the gender binary, and because
gender (or sex) is the first marker of identity that patients divulge on their medical forms. Yet, to
understand the extent to which one’s sex or gender identity needs to be known to administer
appropriate care, we must review the way medicine works. Medications are dosed based on
pharmacokinetics, pharmacodynamics, and physiology. Pharmacokinetics involve the
3737. V. Tangpricha. “Safety of Transgender Hormone Therapy.” Journal of Clinical and Translational Endocrinology 2, no.4 (2015): 130.38. M. Klaver; M. J. H. Dekker; R. de Mutsert; J. W. R. Twisk, & M. den Heijer. “Cross-sex Hormone Therapy in Transgender Persons Affects Total Body Weight, Body Fat and Lean Body Mass: A Meta-Analysis.” Andrologia (2016): 1-11. DOI:10.1111/and.1266039. J. Fernandez, & L. R. Tannock. “Metabolic Effects of Hormone Therapy in Transgender Patients.” Endocrine Practice 22, no. 4 (2016): 383-388.
18
absorption, bioavailability, volume of distribution, metabolism, excretion and protein binding of
drugs. Pharmacodynamics involve receptor binding and chemical interactions. Physiological
characteristics that influence a drug’s pharmacodynamics include body weight, age, organ size,
body fat, glomerular filtration rate, and gastric motility.
The physiological factors that need to be considered significant between cisgender male
(XY chromosomes) and cisgender female (XX chromosomes) patients is gastric motility because
cisgender men typically clear drugs 15% faster than do cisgender female patients, and this is
accounted for in the Cockcroft-Gault (CG) method for calculating clearance creatinine40.
According to the National Kidney Foundation41, however, the CG method is “no longer
recommended for use because it has never been expressed using standardized creatinine values.”
Developed in 1973, CG used data from 249 cisgender men. However, because studies
historically have used CG to determine levels of kidney function for dosage adjustments in drug
labels, it remains in use clinically.
The main factors affecting creatinine generation are muscle mass and diet. Typically,
cisgender female bodies have less muscle mass than do cisgender male bodies, so it would
follow that cisgender female bodies have less creatinine generation when compared to cisgender
male bodies. It is important to note, however, that the genetic sex markers of a person do not
necessarily determine this, as we could argue the same for people who follow a vegan diet. A
diet restricted of protein will likewise lead to a decrease in creatinine generation. Moreover, the
cultural changes that have transpired in the U.S. since the 1970s, specifically the rise in obesity
and the decrease in physical activity, may have narrowed the 15% gap between male and female
40. National Kidney Foundation website https://www.kidney.org/sites/default/files/docs/12-10-4004_abe_faqs_aboutgfrrev1b_singleb.pdf.4141. Ibid.
19
patients. The CG method was developed in an era when gender and ethnic minorities were not
accounted for in scientific research. Similarly, today, the paucity of research on trans*+ and
intersex individuals is palpable.
The medical community does not know the effects that hormone therapy has on the way
in which a body processes any medication other than the hormone itself. We do not yet
understand how a trans*+ female body (XY chromosomes) on hormone therapy generates
creatinine and how this affects her response to medications. We do know that a body taking
estrogen will typically lose muscle mass and shift body fat. A body taking testosterone will
typically gain muscle mass. Yet, while we know something about the external changes we can
witness, we know virtually nothing about how the organs absorb, secrete, and process
medications. Until more studies are conducted on these bodies, we will not know how they will
respond pharmacockinetically. With so many variables that are unknown, why would we treat a
trans*+ body any differently than we would a cisgender body?
E. Medications and Natal Sex Marker (In)Significance
Considering that we do not understand the physiological changes that occur during a
gender transition, we propose that knowing the natal sex marker of an individual does not always
help when dosing medication. We do not know their organ sizes, their fat distribution, their
volume of distribution, or their gastric transit times based upon the natal sex marker. These
generalizations about how cisgender bodies operate are just that -- generalizations; they do not
necessarily help determine the best medical treatment possible.
Some may argue that natal sex must be known to dose narrow therapeutic index (NTI)
drugs. Having small differences between their therapeutic and toxic doses, NTIs with small
20
changes in dosage or interactions with other drugs could cause adverse effects; however,
Meibohm et al.42 argue, “clinical relevance will be achieved for drugs with narrow therapeutic
index (NTI), and dose selection of those is often already individualized to the patient’s needs by
default”. This individualized medicine will be based upon a complete lab profile. A
comprehensive list of NTI medications is not available through the Federal Drug Administration
(FDA), but most scholarly articles define them as: aminoglycosides, cyclosporin, carbamazepine,
digoxin, flecainide, lithium, phenytoin, phenobarbital, rifampicin, theophylline, and warfarin43.
Personalized medicine, including pharmacogenomic testing on specific drugs is an area
that must be further considered for all patients44:
The debate over clinical utility of genetic tests needs to be resolved with
consensus on evidentiary standards. Physicians, as gatekeepers of prescription
medicines, need to increase their knowledge of genetics and the application of the
information to patient care. An infrastructure needs to be developed to make
access to genetic tests and decision‐support tools available to primary
practitioners and specialists outside major medical centers and metropolitan areas.
Personalized medicine would allow all patients, non-binary and binary alike, to receive more
accurate drugs and more accurate dosing. A person’s entire genetic makeup would be considered
when choosing medications, rather than just a standard work up that may not pertain to every
patient. For example, patients who are outside of the “normal” range of height, such as little
42. B. Meibohm & H. Derendorf. “How Important are Gender Differences in Pharmacokinetics?” Clinical Pharmacokinetics 41, no. 5 (2002): 329-42, at 338.43. J. Tanargo; J. Y. Le Heuzey, & P. Mabo. (2015). “Narrow Therapeutic Index Drugs: A Clinical Pharmacological Consideration to Flecainide.” European Journal of Clinical Pharmacology, 71(5), 549-567. at http://doi.org/10.1007/s00228-015-1832-044. L. Lesko & S. Schmidt. “Clinical Implementation of Genetic Testing in Medicine: A U.S. Regulatory Science Perspective.” British Journal of Clinical Pharmacology 77, no. 4 (2013): 606-11, at 606.
21
people, do not have a CG equation to help determine clearance creatinine. Therefore, when
dosing these patients, we are using our best judgement to dose appropriately, looking at lab
results, and then adjusting doses accordingly.
The effectiveness of gender-based medicine has yet to be proven clinically45:
In general, data on sex differences are mostly obtained by posthoc analysis and,
therefore, the conclusions that can be drawn are limited. For a better
understanding of the basic mechanisms of sex differences, future studies should
be designed with a primary focus on this topic. More specific data will help to
determine the extent to which these differences will have implications for clinical
management.
There are no dosing guidelines for patients who are trans*+ or intersex. There are no
studies on trans*+ or intersex responses to medications, other than those conducted on hormone
replacement therapies. Only now are studies beginning to address cisgender women and their
responses to medications during their menstrual cycles, during pregnancy, and during
menopause. To understand how trans*+ and intersex individuals on hormone replacement
therapy respond to medications other than hormones, we would need to include them in medical
trials and report on their stage of hormone therapy while participating in the trial. Moreover,
these studies would need to be conducted across various types of medications.
No research has been conducted on trans*+or intersex individuals’ responses to atypical
antipsychotics. Atypical antipsychotics appear to be affected by a number of factors, including
the severity of the psychological disorder. While some generalizations are made with regard to
45. O. Soldin, & D. Mattison. “Sex Differences in Pharmacokinetics and Pharmacodynamics.” Clinical Pharmacokinetics 48, no.3 (2009): 143-57, at 154.
22
gender and the dosing of atypical antipsychotics46, they would not apply to every person, as they
rely heavily upon body mass and organ function47:
Although men have higher gastric acidity, gastrointestinal transit times and, therefore,
higher antipsychotic bioavailability, they have a higher body mass index, larger organs,
and higher plasma protein-binding capacity resulting in lower proportion of protein-free
drug molecules available to cross the blood–brain barrier. Men also have larger
distribution volume than women, which results in lower initial plasma and cerebrospinal
fluid concentration of active molecules. Their fat storage is less than in women, leading
to a shorter duration of action for antipsychotics, which are mostly lipophilic.
The prevalence of suicide attempts among respondents to the National Transgender
Discrimination Survey (NTDS), conducted by the National Gay and Lesbian Task Force and
National Center for Transgender Equality, is 41%, which vastly exceeds the 4.6% of the overall
U.S. population who report a lifetime suicide attempt, and is also higher than the 10-20% of
lesbian, gay and bisexual adults who report ever having attempted suicide48. Given the high
incidence of self-harm and suicidality in trans*+individuals verified in the literature,
antipsychotics are a vital area to consider in future studies. While the percentage of
trans*+individuals reporting suicidal thoughts and self-harm should decrease as does trans*+
discrimination, more research needs to be conducted on antipsychotic medications to aim for
optimal patient care for all patients.
46 M.V. Seeman. “Gender Differences in the Prescribing of Antipsychotic Drugs.” The American Journal of Psychiatry 161 (2004): 1324–33.4747. W. Aichhorn, A. B. Whitworth, E. M. Weiss, J. Marksteiner. Second Generation Anti-psychotics: Is There Evidence for Sex Differences in Pharmacokinetic and Adverse Effect Profiles? Drug Safety 29, no. 7 (2006): 587-598, at 593. DOI: 10.2165/00002018-200629070-0000448. A. P. Haas; P. L. Rodgers, & J. L. Herman. Williams Suicide Report: Findings of the National Transgender Discrimination Survey. American Foundation for Suicide Prevention & The Williams Institute, UCLA. at http://williamsinstitute.law.ucla.edu/wp-content/uploads/AFSP-Williams-Suicide-Report-Final.pdf
23
F. Sex Differences in Theory
People historically referred to as female-to-male (XX chromosomes) patients taking
testosterone will have muscle and fat redistributing and fluctuating hormone levels depending
upon the dosing and administration of their testosterone; however, current research speculates
that they may respond to medications in the same way as cisgender males would49:
Sex-differences in these parameters may account for differences in the
concentration of a drug at the target site and result in varying responses. On
average, total body water, extracellular water, intracellular water, total blood
volume, plasma volume, and red blood cell volume are greater for men than
women. Therefore, if an average male and an average female are exposed to the
same dose of a water soluble drug, the greater total body water, plasma volume,
extracellular water, and intracellular water will increase the volume of distribution
thus decreasing drug concentration.
Put simply, as the hormone therapy effectively changes secondary sex characteristics by
changing fat distribution and metabolism, it likely changes internal organ function as well.
Theoretically, the same would be true for people historically referred to as male-to-female (XY
chromosomes). Therefore, dosing a trans*+ man (XX chromosomes) by cisgender female
standards might under-medicate him. Likewise, giving a trans*+ woman (XY chromosomes) a
dose appropriate for a cisgender male could over-medicate her. Without conducting a full genetic
workup, physicians may be dosing incorrectly.
49. O. Soldin, & D. Mattison supra note 43, at 147.
24
Looking only at hepatic metabolism, “sex-related differences have been shown in the
pharmacokinetics of CYP450, with a higher activity in females for CYP3A4 and CYP2D6.
However, even if there are sex-differences in drug pharmacokinetics, only some drugs have
shown significantly higher plasma concentrations in women”50. The importance of this should
not be understated. When we focus on knowing the natal sex marker of patients, we may be
placing an unneeded emphasis on their genotype, which may not provide much useful
information for medical treatment. Further, we may be causing unnecessary trauma to patients
who often already experience discrimination in many other facets of life.
The most common cases in which certain, not all, medical providers need to know about
natal sex is when a trans*+ male has retained his ovaries and/or uterus and when a
trans*+woman still has a prostate. Because so much confusion ignorance surrounds terminology
and because little effort is being made by the majority of medical schools to educate health
science students on these matters, many practitioners are unaware of what the term trans*+ may
mean. As the stereotype of the “man with a vag”51 is reiterated in popular culture, many
practitioners believe that a trans*+ man always needs a pap smear, or forget that most, but not
all, trans*+ women need routine prostate exams. In addition, it can also cause patients to do
much of the teaching when they may be in need of dire medical attention. This can lead to
complications with and unnecessary delays from health insurance providers who likewise only
assign “male” and “female” markers to patients while believing that these gender markers have
significant clinical values for the dosing of all medications, not merely for NTIs and atypical
antipsychotics.
50. Ibid. 51. S. S. Funk, & J. Funk. “Transparent Dispossession in Transparent: Coming Out as a Euphemism for Honesty. Sexuality and Culture 20 no. 4 (2016): 879 - 905, at 895. DOI:10.1007/s12119-016-9363-0
25
Instead of a gender binary check-box on medical intake forms, what if we created a new
version that did not include sex or gender? It would ask for a patient’s medication history, a list
of symptoms they might be having, and the appropriate pronouns that should be used to address
them. Patients could see a list of anatomical parts they may have and the medical
recommendations suggesting how often they should have those parts evaluated. For example, a
body with testicles and breasts would need to have their testicles and breasts examined for
cancer. The form would indicate the recommended time frame and frequency of the exam. The
patient’s visit may not necessitate this exam, depending on patient preference and need;
however, they would have the information available to them for future reference. The
medications a person takes would need to be listed as well, so that practitioners know what labs
to monitor. For example, a body taking testosterone will need to have testosterone levels
monitored, as well as cholesterol levels. It is not important to know if that body has testicles
producing testosterone, as the levels of this medication can be adjusted without knowing this. By
acknowledging that gender is a spectrum, the medical field could better serve patients.
By creating a more gender inclusive and comprehensive medical intake form, we could
reduce the cisgender privilege that has contributed to the current ideological state regarding
binarism while validating those who identify as something other than cisgender. This endeavor,
however, will need to be stimulated not merely through shifting cultural norms by increasing
media visibility and creating more equitable medical practices, but through creating legal
protections that acknowledge gender as a spectrum and protect patient privacy to increase safety
and autonomy.
III. Legal Considerations in Trans*+& Intersex Privacy in Healthcare
26
As in medical diagnosis and practice, cissexist, dyadic and heterosexist thinking pervades
the laws governing medical privacy in the United States. A society's laws reflect the values,
preoccupations, and assumptions of that society. American medical privacy law, by that token,
assumes that all individuals are men or women, that all such individuals are unambiguously so,
with anatomical traits all uniformly indicative of one binary sex or the other, and that an
individual's sex (and gender) is readily apparent and never a matter of personal privacy. These
assumptions, injurious as they are in social contexts for trans*+ and intersex individuals, are
especially harmful when they are encoded into law, and as such deny trans*+ and intersex
individuals of privacy or medical autonomy, or expose them to bias and mistreatment at the
hands of healthcare practitioners. As shall be demonstrated herein, the main health care privacy
law in the United States--the Health Insurance Portability and Accountability Act, is woefully
inadequate for the protection of trans*+ and intersex individuals.
The Health Insurance Portability and Accountability Act (HIPAA)52, enacted in 1996,
contains a "Privacy Rule"52. The Privacy rule protects "Protected Health Information", including
medical records, billing records, and diagnoses53 held by healthcare providers without
authorization of the patient54. Authorization may also be revoked. "Protected Health Information"
under HIPAA includes genetic information, including genetic tests and manifestations of genetic
disease in family members. Crucially, however, HIPAA's protection of genetic information does
not include sex or age55.
52. Health Insurance Portability and Accountability Act of 1996 (HIPAA), Pub.L. 104–191. at https://www.gpo.gov/fdsys/pkg/PLAW-104publ191/html/PLAW-104publ191.htm5353. 45 CFR 164.5085454. 45 CFR 164.5015555. 45 CFR 164.5081
27
HIPPA, clearly, allows some privacy protection and control of personal health
information. A diagnosis of Gender Dysphoria (or previously, Gender Identity Disorder) would
constitute "Protected Health Information" under the Privacy Rule. Likewise, by withholding
permission to grant access to certain practitioner's records (such as physicians who treated the
patient when they had a different legal name or sex) a patient could shield a current healthcare
provider from knowledge of their transition. Such a tactic can likewise be used to prevent one’s
psychologist from accessing mental health records from another psychologist or institution, so as
to prevent a mental health provider from gatekeeping a trans*+ individual from needed hormone
therapies or surgeries on the grounds that their dysphoria was the product of unrelated mental
illness or trauma.
Where HIPAA fails is in its presumptions of biological and genetic sex. The fact that
HIPAA's protection of genetic information does not protect sex speaks volumes of the
presumptions of its authors. Congress clearly did not consider that some individuals’ "genetic
sex" (the configuration of one's 23rd pair of chromosomes, most typically XY or XX) would not
align with their other anatomical indicators, presentation, identification, or legal sex. Nor,
apparently, did Congress consider that disclosure of such information might expose a patient to
harm, be it discrimination and denial of medical services, or even violence. If any input was
received from trans*+ and intersex advocates in drafting HIPAA, it seems to have been
unheeded.
A. Contemporary Legislation and Healthcare Privacy
A bill currently before Congress, H.R.2646 - Helping Families in Mental Health Crisis
Act of 2016 (the "Murphy Bill" for its sponsor, Congressional Representative Tim Murphy of
Pennsylvania), seeks to diminish existing privacy protections under HIPAA concerning mental
28
health diagnoses and treatment56. H.R. 2646, which as of this publication has passed the House
and is before the Senate, seeks, "To make available needed psychiatric, psychological, and
supportive services for individuals with mental illness and families in mental health crisis, and
for other purposes"57. The reality is that bill seeks to diminish the protection afforded mental
health care information on the spurious grounds that mentally ill individuals cannot recognize
that they are mentally ill, cannot make treatment decisions for themselves, and will suffer
grievous neurological and physical harm if not forced into treatment58. The Murphy Bill would
relax privacy protection for mental health information, allowing disclosure in myriad
circumstances, such as when, “the patient does not consent, but the patient lacks the capacity to
agree or object and the communication or sharing of information is in the patient’s best interest";
"the patient does not consent and the patient is not incapacitated or in an emergency
circumstance, but the ability of the patient to make rational health care decisions is significantly
diminished by reason of the physical or mental health condition of the patient,"; and most
disturbingly, "the patient does not consent, but such communication and sharing of information
is necessary to prevent impending and serious deterioration of the patient’s mental or physical
health"59. The Murphy Bill would disempower the Substance Abuse and Mental Health Services
Administration (SAMHSA), creating a new position of Assistant Secretary for Mental Health
and Substance Use, which would require either an MD or a PhD in psychology, and would
delegate to the Assistant Secretary all duties and authority currently held by the Administrator of
the SAMHSA, including determining the standards for grant programs and reviewing existing
federal programs for the diagnosis, treatment, and prevention of mental illness and substance
5656. 45 CFR160.1035757. H.R.2646 – Helping Families in Mental Health Crisis Act of 2016. at https://www.congress.gov/bill/114th-congress/house-bill/2646/text#toc-H3D36B6E863EE4334AA744BC434B55A4658 Ibid. 5959. H.R. 2646, Title IV, section 401(a)(1)-(a)(5)
29
abuse60. Further, it diminishes the legal protections afforded to patients concerning their mental
health records by prohibiting any "lobbying using Federal funds by systems accepting Federal
funds to protect and advocate the rights of individuals with mental illness"61, ending the
important work done by the Protection and Advocacy for Individuals with Mental Illness
(PAIMI) on behalf of the mentally ill and their families. The Murphy Bill would also require
involuntary outpatient treatment, a dangerous step backwards towards the era of straightjackets
and electroconvulsive therapy62.
Given the fact that a mental health diagnosis is still a requirement for transgender
individuals to receive transition-related treatment, and that trans*+ individuals are considered a
medically underserved population63, this proposed legislation is especially worrisome to
advocates of LGBTQIA rights. Of particular concern is the possibility of the relaxed protection
for mental health-related Protected Health Information being disclosed to family members who
did not know that their relative was trans*+, in the outing of that individual and their exposure to
social ostracization and potential violence. LGBTQIA Children are especially at risk; to date
only California, New Jersey, Oregon, Illinois, Washington, D.C. prohibit anti-LGBT
“reparative/conversion therapy”, and the outing of a trans*+ child to transphobic parents could
lead their being forced into an abusive treatment regime decried by most psychologists and
pediatricians as ineffective and psychologically damaging64. It is for these reasons that
6060. H.R. 2646, section 403(a)(5)6161. H.R. 2646, section 1016262. H.R. 2646 SEC. 5036363. The Fenway Institute. “The Case for Designating LGBT People as a Medically Underserved Population and as a Health Professional Shortage Area Population Group”. (2014) at http://fenwayhealth.org/documents/the-fenway-institute/policy-briefs/MUP_HPSA-Brief_v11-FINAL-081914.pdf6464. J. Drescher; A. Schwartz; F. Casoy; C. A. McIntosh; B. Hurley; K. Ashley; M. Barber; D. Goldenberg; S. E. Herbert; L. E. Lothwell; M. R. Mattson; S. G. McAfee; J. Pula; V. Rosario, & D. A. Tompkins. “The Growing Regulation of Conversion Therapy”. Journal of Medical Regulation 102 no.2 (2016), 7-12. at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC504471/
30
organizations such as the ACLU, Leadership Conference, Human Rights Campaign, and
Amnesty International have expressed opposition to the Murphy Bill65.
B. The Need for Greater Privacy Protection
What the law needs for trans*+, intersex, and gender-nonconforming patients is more
privacy, not less. Rather than granting broader access to family members, as the Murphy Bill
proposes, Congress should amend HIPAA to enact more robust protection of Protected Health
Information. Patients should be granted greater access to their own records, including
psychiatrists’ notes and information compiled in anticipation of criminal prosecution. HIPAA
should also be amended to classify genetic information relating to sex as Protected Health
Information.
To better serve the health care needs and protect the privacy of trans*+ and intersex
patients, HIPAA should be modified to allow patients granular control over health records,
especially in areas concerning gender. A patient should have the option to allow a current
healthcare provider access to relevant history without having to disclose prior names and gender-
related health care that does not have bearing on the present conditions being treated. An
emergency room physician, for example, should be able to access, with patient authorization,
that individual's history in order to know that they are hemophiliac or have diabetes, so they
know how to perform emergency appendectomy surgery accordingly; whether that patient was
assigned male or female at birth, however, should not be accessible to that doctor without
separate and explicit authorization, and should be classified as Protected Health Information.
6565. “Sign-On Letter to House Energy and Commerce Committee Opposing H.R. 2646, the “Helping Families in Mental Health Crisis Act of 2015”. at https://www.aclu.org/letter/sign-letter-house-energy-and-commerce-committee-opposing-hr-2646-helping-families-mental; Oppose the “Helping Families in Mental Health Crisis Act of 2015” (H.R. 2646). at http://www.civilrights.org/advocacy/letters/2016/oppose-hr-2646.html
31
IV. Conclusions: The Expansion of Gender and Medical Privacy
The recent media attention surrounding trans*+ individuals (and the lack thereof for
intersex individuals) has underscored the need for us to dismantle the gender binary, reframe
how we consider gender in medicine, and buttress this ideological shift through legal protections.
When a patient’s doctor refuses to treat them, claiming that instead of needing chemotherapy for
cancer, the trans*+ patient needs psychological counseling for their gender presentation66, there
is clearly a healthcare crisis.
One’s gender identity should never be wielded as a weapon against them, especially not
in the medical setting – a place for healing. Because gender identity discrimination is so rampant
and because genomic medicine is the new frontier of the 21st decade, our healthcare system must
begin to accommodate the spectrum of gender identities expressed by patients. Moreover, the
disclosure of one’s natal sex marker, secondary sex characteristics, and gender
presentation/expression should be data controlled by the patient and made available to medical
practitioners treating patients for issues relevant specifically to them.
A person should have the right to privacy if they choose and our medical system should
be able to accommodate this request not only on medical forms, but in the medical record as
well67. To date, cisgender individuals have exerted their privilege (albeit often unknowingly) to
create and reinforce the gender binary, an ideology that has, thus far, served to cause unnecessary
trauma to trans*+ and intersex individuals. Contemporary research is busily debunking the
legitimacy of race-based medicine68, favoring instead individualized medicine, genomic
6666. C. Curry. “Navigating Cancer as a Trans Person is a Nightmare.” Newsweek. Posted July 21, 2016. at http://www.newsweek.com/2016/07/29/cancer-transgender-health-hormone-therapies-482423.html6767. M. C. McNamara. “Best Practices in LGBT Care: A Guide for Primary Care Physicians.” Cleveland Clinical Journal of Medicine 83 no. 7(2016): 531-41.6868. J. Kahn. “The Troubling Persistence of Race in Pharmacogenomics.” Journal of Law, Medicine, & Ethics 40 no. 4 (2012): 873 - 85. DOI: 10.1111/j.1748-720X.2012.00717.x.
32
medicine, based on genetic testing. While the efficacy of genomic medicine has been
substantially proven over gender-based and race-based medicine, scholars have also called for
increased legal protections of patients69. Our medical privacy laws should protect the privacy of
all individuals, especially those most vulnerable, rather than preserving and reifying an
inequitable and unscientific gender binary.
The new frontier of media, law, and healthcare must begin to honor the spectrum of
gender that patients present, as well as protect their privacy. Countless social media now
facilitate communication among non-binary and gender fluid individuals who are challenging
the gender binary on a global scale70. This issue is not one to address with a “wait and see”
perspective, as other progressive countries have already begun changing laws to reduce the
stigmatization and pathologization of intersex and trans*+ individuals.
Eleven countries currently give their citizens the right to declare their own gender,
regardless of anatomy, and to update their legal documents accordingly and expediently 71. How
will American medical practitioners respond to patients visiting from other countries
presenting their legal genders as “x,” “agender,” or “trans”? How can the medical records of
these patients reflect their authentic sense of self and not foist antiquated binary ideologies
upon them? How can the laws of this nation better protect the privacy and respect the
autonomy of trans*+ and intersex individuals? More importantly, how can the U.S. not only
adapt to these challenges, but remain a global leader for individuals’ freedom and autonomy?
6969. E. D. Green; M. S. Guver; T. A. Manolio, & J. L. Peterson. “Charting a Course for Genomic Medicine from Base Pairs to Bedside”. Nature 470 no. 7333 (2011): 204 -13.7070. D. Schull. Communicative Acts of Identity: Non-Binary Individuals, Identity, and the Internet. (2015). (Master’s Thesis). California State University, East Bay. at http://dspace.calstate.edu/bitstream/handle/10211.3/146228/Dee(Daniel).ShullThesis.pdf?sequence=17171. A. Macarow. “These Eleven Countries are Way Ahead of the US on Trans Issues.” Attn:. Posted February 9, 2015. At http://www.attn.com/stories/868/transgender-passport-status
33
We argue that it is of critical importance to examine the relationships among media, medicine,
and law to begin to make interdisciplinary connections that not only protect the rights of
intersex and trans*+ individuals, but also expand the notion of gender and gender privacy so
that everyone may feel validated and protected while seeking optimal medical care.
34