The clinic is a loaded space for LGBTQI persons. Historically a site of pathology and culturally a site of stigma, the contemporary clinic for queer patient populations and their loved ones is an ethically fraught space. This paper, which introduces the featured articles of this special issue of the Journal of Bioethical Inquiry on “Bioethics, Sexuality, and Gender Identity,” begins by offering an analysis of scrutiny itself. How do we scrutinize? When is it apt for us to scrutinize? And what are the benefits and perils of clinical and bioethical scrutiny? Bearing in mind these questions, the second half of this paper introduces the feature articles in this special issue in response to such forms of scrutiny. How, why, when, and in what ways to sensitively scrutinize LGBTQI persons in the clinic are the aims of this piece.
KeywordsQueer health bioethics scrutiny stigma
Thinking is more interesting than knowing, but less interesting than looking.
To address the many pressing ethical issues that lie at the intersections of bioethics, sexuality, and gender identity, we have sounded a call for a new subfield, “Queer Bioethics” (Wahlert and Fiester 2012a). Persons who are lesbian, gay, bisexual, transgender, queer/questioning, or intersex (LGBTQI) face myriad bioethics-related challenges in their encounters with and within the medical system. While ethical issues sometimes differ across LGBTQI groups, their health care providers, and their caregivers, there remains the common theme of the considerable impacts of sexuality and gender identity issues in health care access and treatment. Employing “queer” both as an umbrella term for all gender and sexual minorities and as an approach that challenges the pervasive stigma often tied to these groups, Queer Bioethics seeks to create a critical, sustained, multidisciplinary focus on this interrelated set of ethical problems.1 This special issue of the Journal of Bioethical Inquiry is a critical step in spawning this serious and much-needed scholarly engagement.
While there has been substantial scholarship in the neighboring fields of sexuality studies and gender studies, such work has addressed only some of the important bioethical concerns and has not always reached a bioethical audience. In the field of bioethics, some targeted areas have been given significant attention, while others have been largely neglected.2 More importantly, in the fields of both medical humanities and bioethics, there have been few attempts to collate, unify, or create a distinct field of study that speaks to the union of bioethics, sexuality, and gender identity. In short, the intersection of bioethics with sexuality and gender identity remains largely understudied.
In response to this dearth of scholarship, we have created the Project on Bioethics, Sexuality, and Gender Identity, which seeks to redress this scholastic omission and to demarcate a new field within bioethics. Amassing an international consortium of more than 300 scholars from 20 countries, the project highlights the bioethical dilemmas that need scholarly attention and seeks to take the intellectual steps necessary to move the dialogue forward in both bioethics and medical humanities.3 It is in the context of the creation of the new field of Queer Bioethics that we have assembled this special issue of the Journal of Bioethical Inquiry.
In her poem “Judgment Is Justest,” Emily Dickinson writes, “Not any color will endure/That scrutiny can burn.” Acknowledging the intimidating and powerful capacities of scrutiny, Dickinson does not warn us to avoid it altogether. Rather she asks that we fortify ourselves in the strongest and most apt hue, one that can endure the glare of those harsh but nevertheless valuable moments of judgment in life and beyond. It is a call to define the stakes of scrutiny, not evade them. If scrutiny and judgment are the hallmarks of contemporary bioethics but the historical foes of queer persons in the clinic, then we must follow Dickinson’s wise advice and find the hue of our Queer Bioethical scrutiny.
The agenda of a new Queer Bioethics is, therefore, to scrutinize in two important senses: first, to offer a penetrating examination—a questioning scrutiny—of the ways LGBTQI persons have been treated, ignored, dismissed, patronized, judged, and (most importantly) pathologized in the clinical realm; and, second, to challenge the misplaced scrutiny that is reserved solely for persons who are LGBTQI as they intersect with the clinic—that is, to question scrutiny itself. Scrutiny in the first sense has the goal of exposing and unveiling the ways in which LGBTQI persons and their queer-specific needs have been under-addressed in the health care professions, systems, and institutions. This aspect of Queer Bioethics serves LGBTQI patients and persons by bringing into relief the troubling and shifting values of stigma, sympathy, shame, and duty. This is a crucial project given the historically loaded moment queer persons live in—bridged between a painful past of pathology and evasion and a future of indeterminate clinical citizenship and agency.4
But scrutiny in the second sense is equally important in Queer Bioethics. In this sense, scrutiny is understood to be a suspicious surveillance generated by doubt, mistrust, and misgiving of the persons being scrutinized. Persons who are LGBTQI are routinely on the receiving end of this sense of scrutiny. Parsing this term tells a significant part of the story of how LGBTQI persons often fare in the clinic. Consider our common uses of the term. For example, we say that we subject someone to scrutiny because of an underlying disquietude about who they are and what they do. We say that someone deserves scrutiny, thereby implying that such persons are already implicated in a form of wrongdoing and thus warrant our extra level of vigilance. And we ask if someone can withstand scrutiny, wondering if the person can pass the test we have created for the individual’s legitimacy and acceptability. We have termed this tripartite scrutiny of LGBTQI persons “the suspicious gaze” (Wahlert and Fiester 2012b, 283). Not unlike Michel Foucault’s notion of the “clinical gaze,” which speaks to the penetrative and domineering power of medical surveillance historically and circumstantially in the clinic, the suspicious gaze is “passively linked to the primary passivity that dedicates it” whereby “medical rationality plunges into the marvelous destiny of perception” (Foucault 1994, xiii–xiv). But while Foucault’s term largely speaks to the power of the clinician to secure and maintain his or her upper hand in the medical sphere, the “suspicious gaze” speaks more to the plight of those subjected to it than those employing it.
In a well-known argument, leading disability studies scholar (and contributor to this special issue) Rosemarie Garland-Thomson has claimed that “staring” (or “gazing”) can liberate—not just objectify—disabled persons from the intimidating parameters of the Foucaultian gaze (Garland-Thomson 2005/2009). By arguing that visibility reclaims its own species of power, Garland-Thomson shows that being the recipient of visual scrutiny is not always marginalizing and disempowering. There is significant merit to a parallel claim regarding queer persons in the clinic: to be seen at all (and seen as “queer”) is a vital primary moment in gaining clinical legitimacy. But the liabilities of that scrutiny are equally palpable: They entail a potent kind of clinical accusation. Our tripartite breakdown of scrutiny in the clinic (i.e., we subject one to scrutiny, we ask who deserves this scrutiny, we ask if someone can withstand this scrutiny) subjects LGBTQI persons to two metaphorical forms of examination: a litmus test of their cultural worth and a penance for their possible cultural offenses. The scrutiny that is at the heart of this interrogation raises a wide range of bioethical concerns that need analysis, dissection, and redress. Our intention, then, in advancing a field of Queer Bioethics is to employ a methodology that calls out this illicit scrutiny, while calling for a queer-invested scrutiny that can detect the queer concerns that have fallen under the radar of conventional bioethical consideration.
In This Issue
In harmony with such a methodology, this special issue of the Journal of Bioethical Inquiry collates scholarship from a diverse field of scholars: bioethicists, queer theorists, medical historians, philosophers, and literary and cultural scholars working in the medical humanities. By integrating a host of central bioethical principles such as consent, confidentiality, honor, and responsibility, the articles included in this special issue represent: (1) a strategic cadre of pieces that will assist in defining the parameters of what a Queer Bioethics can look like; and (2) a demonstration of what LGBTQI-invested bioethics can do. If there is a lingering history of queer interactions with the clinic, whereby queer persons are often pathologized and stigmatized, then the contemporary need for the bioethical gaze to be queer-sensitive is imperative.
Accordingly, the first article in this special issue is a re-visitation of a seminal piece that constituted one of the first calls for a queer consideration in the discipline of bioethics. Over a decade ago, James Nelson published a piece in the journal GLQ entitled “The Silence of the Bioethicists,” in which he called for a more consistent and a more engaged bioethical interest in the hormonal and surgical needs of transgendered persons in the clinical realm (Nelson 1998). While paying special attention to the concerns of this patient population at that particular clinical moment, his seminal text was also a mandate to pay greater attention to all populations marginalized by sexual and gender normativities. Thus, we begin this special issue of the Journal of Bioethical Inquiry with a piece from Nelson himself, in which he revisits the stakes and issues of his call from 14 years ago. With historical savvy and philosophical scrutiny, Nelson reminds us of the queer clinical stakes that prompted the composition of his paper so many years ago and the enduring bioethical dilemmas that inform his reassessment of it more than a decade later.
Given the necessity and the centrality of historical legacies of queer clinical subjecthood in contemporary concerns for queer patients, the second essay in this special issue is a historiographical assessment of medical history itself for sexual and gender identity minorities. Lance Wahlert, in his essay “The Painful Reunion,” offers a systematic and intimidating assessment of the persistent specter that the clinic provides for current LGBTQI persons. Using Foucault’s theories on the births of both the clinic and the homosexual as starting points (Foucault 1990, 1994), Wahlert asks us to consider how the pathologization of queer persons in the past (which shifted queer existence from a juridical to a medical framework) actually lingers today—haunting and, in many ways, informing the ethical responsibilities to and moral hurdles of queer patients in the present. Reading a series of historical and narrative texts written over the course of the 20th century, Wahlert argues that a clinically seminal date for queer persons that was to have been a liberating moment actually signified a mirage of clinical liberation. The removal of “homosexuality” from the American Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973 was hailed as the beginning of the end of clinical pathology for LGBTQI persons, and yet the onset of AIDS less than a decade later reinforced and exacerbated that historically-infused pathology for all queer parties. This “painful reunion” in the early 1980s, which re-medicalized queer subjects in the clinical and popular mindsets, signifies the weighty and complicated need for a contemporary Queer Bioethics itself.
The next essay in this collection speaks to one of the most enduring topics in LGBTQI bioethics: medical interventions for intersex children. If there could be said to be a hesitation on the part of bioethicists to consider the clinical needs of non-normative patients according to gender and sexuality standards, intersex individuals have been a consistent and prominent population of scrutiny. Although sincere investment in the welfare of these individuals might explain some of this bioethical attention, a competing explanation is the motivation to “fix” these individuals. This more sinister reading gains credence from a review of the existing intersex literature. No scholar has been more diligent and critical of this discourse than Alice Dreger. Here, she and fellow intersex scholars Ellen Feder and Anne Tamar-Mattis provide a comprehensive and thorough analysis of the latest medical interventions for intersex youth, namely the use of prenatal dexamethasone for congenital adrenal hyperplasia. Consistent with their past body of scholarship, Dreger, Feder, and Tamar-Mattis address incredibly controversial material with sophisticated analysis, arguing that the stakes involved in the welfare and treatment (or non-treatment) of intersex persons are not only pressing for this population but also emblematic of the universal stakes of bioethics itself.
If intersexuality has been one of the hallmark queer-invested issues addressed by bioethicists, then policies on AIDS and HIV have been a close second. In the initial years of the HIV pandemic, bioethical attention on AIDS was almost unrivaled compared to other subjects: Do we quarantine? Do we have a right to disclose information? Who is entitled to drug trials? Have we stigmatized populations through our clinical policies? And yet when combination drug therapies appeared in HIV treatment by the late 1990s, there was a sharp decline in attention by bioethicists to AIDS-related topics. Throughout the span of those years to today, perhaps no scholar has paid greater attention to the significance and the legacy of AIDS than Cindy Patton. In the fourth article of this special edition, Patton writes alongside Hye Jin Kim to address current policies, practices, and ethical dilemmas related to HIV pre-exposure prophylaxis (PreP) trials. Employing historical, sociological, and statistical lenses to their study, Patton and Kim ask us to consider whether PreP protocols are problematic in their own right or are actually emblematic of the long-standing and unavoidable ethically significant dilemma of the AIDS pandemic—chronic or otherwise.
In his contribution to this special issue, Timothy F. Murphy, one of the leading and consistent voices on LGBTQI-related bioethics, offers his latest assessment of the fertility rights of transgender persons given their intricate and complicated relationships with the clinic. More specifically, he considers whether the already ethically fraught category of fertility preservation is problematized or normalized by the injection of transgender subjecthood. Employing a philosophical and pragmatic approach to this topic and the burgeoning field of Queer Bioethics, Murphy’s article asks us to consider how exceptional queer bioethical topics might be; or, rather, how ordinary they ought to be.
By contrast, the next piece in this issue by Julie Elman focuses on the cultural and popular conceptions of queer and disabled existences as ethically and medically intertwined. Using recent and contemporary representations of queer and disabled figures in media and television, Elman suggests that the intersections of the fields of queer and disability studies are not merely categorically similar but actually brethren in their ethical significance and discourse. Focusing most explicitly on the narratively and culturally relevant elements of the 1990s television show Life Goes On, Elman uses this program as a launching pad to examine and challenge the limitations and possibilities of cultural documents to bear witness to and press the possibilities for a richer discourse between queer studies, disability studies, and bioethics.
Similarly, the next essay by Kane Race is concerned with the performativity of texts and discourses related to AIDS and HIV. In the case of Race’s article, it is the nature of how the law can shape, contextualize, stigmatize, and reframe the notions of responsibility and causation in connection to HIV that forms the cornerstone of his argument. Contrasting assessments of HIV in criminal law and randomized control trials, Race’s contribution to this issue, and to queer bioethical debates, challenges notions of responsibility, culpability, and acceptability in connection to the significant role that HIV social research plays, especially given the status of a global HIV epidemic.
The final pieces in this collection speak to the overarching connections we hope to make between queer studies, queer theory, bioethics, and disability studies. Appropriately, leading disability studies scholar Rosemarie Garland-Thomson, whose theories on “staring” inform the dilemmas and necessities of scrutiny in queer bioethical discourse, closes this issue. Here she provides her most recent assessment of the field of disability studies and, more importantly, the need to preserve and conserve disability as a cultural, intellectual, and clinical category. In the face of calls to render the category of “disability” as progressively unnecessary, Garland-Thomson imagines how the conservation of a category like disability actually signifies an affirmation of the ways in which we configure and reconfigure human value and human existence—in the clinic, beyond the clinic, and in our psyches. Employing a historiographical and philosophical comparison of the threatening category of eugenics through the notion of “counter-eugenic logic,” Garland-Thomson asks us to consider how labels and categories that might be deemed outdated or counterintuitively restrictive actually provide their own forms of mobility and agency, not merely “restrictive liability.” And while Garland-Thomson’s piece is squarely situated in disability studies discourse, it nevertheless provides a confirmation of the shared ethical grounds and close disciplinary proximities of disability studies, bioethics, and queer studies—even when they are not synonymous. To render more explicit this connection and to summarize the value of this special issue of JBI and the field of Queer Bioethics, leading disability/crip studies scholar and queer theorist Robert McRuer offers an afterword to the collection.
As editors, our objective for this issue was to amass a strong collection of the new work being generated under the rubric of Queer Bioethics and to create a catalyst for further work as the field develops. The first goal of bringing renowned scholars from a diverse set of disciplines into this burgeoning field has clearly been met. We now hope this issue promotes and provokes future work that not only scrutinizes queer experiences in the clinic, but also questions the conventional and pervasive scrutiny of LGBTQI persons in the clinic and beyond. These are forms of queer bioethical scrutiny that are much needed, long overdue, and in desperate need of being in the right hue to “endure that (which) scrutiny can burn.”
For a comprehensive analysis of the history and uses of the term “queer” in scholarly discourses, see Annamarie Jagose’s (1997) Queer Theory: An Introduction.
Some areas that have received scholarly attention include: issues regarding intersex children; quarantine and policy-making decisions on AIDS in the earliest years of the epidemic; issues surrounding inclusion or exclusion from the American Diagnostic and Statistical Manual of Mental Disorders (DSM); blood and organ donation policies; gay etiology studies; gay and transgender parenthood; gender-testing in sports; and queer comfort in the clinic. (For examples in these areas, see: Dreger 1998; Panem 1985; Matthews 1988; Rabin 1986; Spitzer 1981; Galarneau 2010; Schüklenk et al. 1997; Stein 1998; Murphy 2010; Simpson et al. 2000; and Harbin, Beagan, and Goldberg 2012.)
For more information about the Project on Bioethics, Sexuality, and Gender Identity, including its consortium, visit www.queerbioethics.org.
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