Author 1:

Jaydi Funk 900 Gold Dust CircleBillings, MT 59105

Home: 406.413.5157, Work: 888.439.8953, Email: 1TeamFunk@gmail.com (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: vande153@mail.chapman.edu (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

1

Home: 406.413.5158, Work: 406.657.2348, Email: Steven.Funk1@msubillings.edu (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

4

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

3

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.

7

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

12

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

15

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.

17

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.

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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.

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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.

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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.

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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

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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.

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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

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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

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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)

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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

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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.

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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

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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