Journal of Bioethical Inquiry, Volume 9, Number 3 (September 2012)
Guest Editors: Lance Wahlert and Autumn Fiester

Editorials

Today’s “Sexmission”

Leigh E. Rich and Michael A. Ashby

Recent Developments

Leave to Intervene in Cases of Gender Identity Disorder; Normative Causation; Financial Harms and Involuntary Treatment; and the Right to Be Protected From Suicide

Cameron Stewart, Tina Cockburn, Bill Madden, Sascha Callaghan, and Christopher James Ryan

Special Issue

Questioning Scrutiny

Lance Wahlert and Autumn Fiester
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.

Still Quiet After All These Years

James Lindemann Nelson
Some 14 years ago, I published an article in which I identified a prime site for bioethicists to ply their trade: medical responses to requests for hormonal and surgical interventions aimed at facilitating transgendered people’s transition to their desired genders. Deep issues about the impact of biotechnologies and health care practices on central aspects of our conceptual system, I argued, were raised by how doctors understood and responded to people seeking medical assistance in changing their gender, and there were obviously significant issues of regulation involved as well. Yet mainstream bioethics was conspicuous by its relative absence from the discussion. Here, I return to the matter and find that, while the conceptual issues are just as profound and their connection to health care practice and policy just as intimate, even as transgender issues have become much more socially visible, bioethical engagement with gender reassignment has increased only slightly. I set the little movement that has occurred against the backdrop of the situation as I saw it in 1998 and conclude, once again, by trying to make the bait for bioethicists inviting.

The Painful Reunion

Lance Wahlert
This article considers the late 19th-century medical invention of the category of the homosexual in relation to homosexuality’s moment of deliverance from medicine in the 1970s, when it was removed as a category of mental aberration in the Diagnostic and Statistical Manual (DSM). With the rise of the AIDS pandemic in gay communities in the early 1980s, I argue that homosexuals were forcibly returned to the medical sphere, a process I call “the painful reunion.” Reading a collection of queer narratives across the 20th century, I show that historical and contemporaneous medical events prompted the mobilization of seropositive and queer artists at century’s end to rehabilitate, revise, and offend the historiography of queer illness. Collectively, my conclusions redefine our understandings of queer theory and queer politics as distinctively 1990s projects invested in the present to ones that purposefully aim to challenge the past.

Prenatal Dexamethasone for Congenital Adrenal Hyperplasia

Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis
Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research.

The Cost of Science

Cindy Patton and Hye Jin Kim
Over the past decade AIDS research has turned toward the use of pharmacology in HIV prevention, including pre-exposure prophylaxis (PrEP): the use of HIV medication as a means of preventing HIV acquisition in those who do not have it. This paper explores the contradictory reasons offered in support of PrEP—to empower women, to provide another risk-reduction option for gay men—as the context for understanding the social meaning of the experimental trials that appear to show that PrEP works in gay men and heterosexual couples but not single women. The PrEP debates reveal the different ideas about “demedicalization” in the earlier gay health and women’s health movements and highlight the relationship between health activism and critique of research ethics in the context of a global pharmaceutical market.

The Ethics of Fertility Preservation in Transgender Body Modifications

Timothy F. Murphy
In some areas of clinical medicine, discussions about fertility preservation are routine, such as in the treatment of children and adolescents facing cancer treatments that will destroy their ability to produce gametes of their own. Certain professional organizations now offer guidelines for people who wish to modify their bodies and appearance in regard to sex traits, and these guidelines extend to recommendations about fertility preservation. Since the removal of testicles or ovaries will destroy the ability to have genetically related children later on, it is imperative to counsel transgender people seeking body modifications about fertility preservation options. Fertility preservation with transgender people will, however, lead to unconventional outcomes. If transgender men and women use their ova and sperm, respectively, to have children, they will function as a mother or father in a gametic sense but will function in socially reversed parental identities. There is nothing, however, about fertility preservation with transgender men and women that is objectionable in its motives, practices, or outcomes that would justify closing off these options. In any case, novel reproductive technologies may extend this kind of role reversal in principle to all people, if sperm and ova can be derived from all human beings regardless of sex, as has happened with certain laboratory animals.

Cripping Safe Sex

Julie Passanante Elman
Life Goes On (1989–1993) was the first television series in U.S. history not only to introduce a recurring teenaged HIV-positive character but also to feature an actor with Down syndrome in a leading role. Drawing new connections among disability studies, queer theory, and bioethics, I argue that Life responded to American disability rights activism and the AIDS epidemic of the early 1990s by depicting sex education as disability activism. By portraying fulfilling sexual relationships for its disabled protagonists, Life challenged heteronormative and ableist underpinnings of marriage, sexuality, reproduction, and sex education and imagined transgressive queer/disabled alliances that often surpassed those of activists of its cultural moment. By representing homophobia, AIDS-phobia, and ableism as intertwined oppressions, the series conjured an expansive vision of sexual justice and pleasure, one that included and united teenagers, intellectually disabled people, and seropositive people—populations whose sexualities have generally been regarded as pathological or nonexistent.

Framing Responsibility

Kane Race
How can we register the participation of a range of elements, extending beyond the human subject, in the production of HIV events? In the context of proposals around biomedical prevention, there is a growing awareness of the need to find ways of responding to complexity, as everywhere new combinations of treatment, behavior, drugs, norms, meanings and devices are coming into encounter with one another, or are set to come into encounter with one another, with a range of unpredictable effects. In this paper I consider the operation of various framing devices that attribute responsibility and causation with regard to HIV events. I propose that we need to sharpen our analytic focus on what these devices do, their performativity—that is, their full range of worldly implications and effects. My primary examples are the criminal law and the randomized control trial. I argue that these institutions operate as framing devices: They attribute responsibility for HIV events and externalize other elements and effects in the process. Drawing on recent work in science and technology studies as well as queer theory, I set out an analytic frame that marks out a new role for HIV social research. Attentiveness to the performative effects of these devices is crucial, I suggest, if we want better to address the global HIV epidemic.

The Case for Conserving Disability

Rosemarie Garland-Thomson
It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world.

Afterword

Robert McRuer

Reviews

Saving Face

Katrina A. Bramstedt

Case Studies

Gay Rights One Baby-Step at a Time: Protecting Hospital Visitation Rights for Same-Sex Partners While the Lack of Surrogacy Rights Lingers

Jaime O. Hernandez

Mediation and Surrogate Decision-Making for LGBTQ Families in the Absence of an Advance Directive

Lance Wahlert and Autumn Fiester

In That Case: Concussion-Driven Dilemmas in Sports Medicine

Daniel Mellifont, Jamie Peetz, and Mark Sayers