Lance Wahlert

A False Sense of Security: Lesbian, Gay, Bisexual, and Transgender (LGBT) Surrogate Health Care Decision-Making Rights

This article addresses the timely and ethically problematic issue of surrogate decision-making rights for lesbian, gay, bisexual, and transgender (LGBT) patients and their families in the American health care system. Despite multiple pro-LGBT recommendations that have been released in recent years by the Obama administration, the Institute of Medicine, and the US Department of Health and Human Services, such initiatives, while laudable, also have unfortunately occasioned a “false sense of security” for many LGBT patients, their families, and their caregivers. In particular, new regulations on surrogate decision making merely invoke a sense of universal patient rights rather than actually generating them. Therefore, it is imperative that primary care physicians urge all LGBT patients to take proactive steps to protect themselves and their loved ones by naming proxy decision makers well before the crises that would necessitate such decisions.

QUEER BIOETHICS: WHY ITS TIME HAS COME

It seems that reflections on the state of the field of bioethics are everywhere these days. And there appears to be a common indictment coming out of those reflections: Bioethics has become ‘predictable’ and ‘narrow,’ ‘sterile and unquestioning,’ and in need of engagement with longneglected subjects using ‘new intellectual approaches.’ It is a call for a broadening of what is worthy of bioethical attention; an expansion in the theoretical resources employed; and the deployment of a skeptical, critical eye on current biomedical practices, policies, inequities, and biases. In his recent The Future of Bioethics, Howard Brody urges us to ask, ‘Is bioethics succeeding in speaking truth to power? Is bioethics effectively taking the side of the relatively less powerful, or siding with those who would exploit them?’ We want to lend our voice to this general call and critique. But although each of these critiques has been accompanied by a list of overlooked topics – disabilities, public health ethics, environmental issues, health disparities, and cross-cultural concerns, to name a few – one category made no one’s list: sexuality and gender identity. While the bioethical dilemmas facing LGBTQI (lesbian, gay, bisexual, transgender, queer, and intersex) persons could qualify under some of the above rubrics, the specific concerns of this community merit their own field of inquiry. LGBTQI bioethics, what we call ‘queer bioethics,’ meets all of the demands made by the discipline’s critics. It places the ‘less powerful’ center-stage; it challenges the status quo and the presumptive legitimacy of the normative; it employs powerful intellectual resources from neighboring fields (queer theory, disability studies, medical humanities, and the history of medicine); and, it challenges our complacency in the face of injustice and discrimination in medical encounters, systems, and policies. Given a parallel urgency to the other topics that critics press us to address, the time for queer bioethics is now. That other institutions and organizations are becoming invested in the concerns of queer patient populations makes the absence of queer bioethics all the more glaring. The EU (European Union) Charter of Fundamental Human Rights, for example – which constitutes the ethical core of the EU’s Treaty of Lisbon and was fully ratified in December of 2009 – expands earlier EU protections of non-discrimination on the grounds of sexuality and gender identity and represents an expanded and unrivaled international commitment by the EU and its member countries to the equal status of LGBTQI persons in the clinic and beyond. Likewise, significant and recent attention has been paid to queer-specific health concerns from mainstream American organizations such as the IOM (Institute of Medicine), the AMA (American Medical Association), and the Obama Administration. The IOM just recently released its first report exclusively on the status of LGBT health. The AMA has officially advocated for full insurance coverage for transpersons who request sex reassignment. And the Obama Administration has issued a policy guaranteeing the hospital visitation and surrogate rights of same-sex partners. Inarguably, it is part of the mission of bioethics to create awareness of the need for new policies and to demand just and fair treatment for all patients. How unfortunate, then, for bioethicists to find themselves later comers in addressing comprehensively such vital, necessary, and controversial ethical terrain. In general, bioethical inquiries on sexuality and gender identity have been undeniably under-studied, despite numerous pressing and sensitive issues that face a significant and marginalized segment of the clinical population. In surveying the history of bioethics, there have been only a handful of queer issues that have generated intense, extensive scholarship from bioethicists – most notably, policies in regards to intersex children, quarantine and policy-making decisions on AIDS in the earliest years of the epidemic, and debates about the efficacy and necessity of therapeutic treatments of homosexuality in the wake of its removal as a mental aberration from the DSM

The Painful Reunion

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.

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

In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate for the implementation of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable.

Questioning scrutiny: bioethics, sexuality, and gender identity.

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.

The Re-Queering of HIV Testing Practices and the Reinforcement of Stigma

Present-day practices and protocols on the standards for HIV testing in regard to matters such as informed consent, opt-out clauses, and counseling services owe their existence to 1990s policies on how to test gay-male and anonymous blood samples for the HIV virus. Nearly 25 years ago, the burden on clinicians and ethicists when testing persons for HIV was this: “What services are we obliged to provide these persons in exchange for letting us test their blood samples for HIV?” Accordingly, we guaranteed test subjects the right to know their sero-status, the promise of confidentiality at all costs, and the reward of sexual health counseling regardless of the results of their HIV tests so that their future health would be improved (AIDS Health Project 2002; Fraser 2005; Marks 2005). And now we have the most recent Centers for Disease Control and Prevention (CDC) policy and its defense by Celada and colleagues (2011), both of which have forgotten this ethical history. Authors Celada and colleagues are highly supportive of the revised 2006 CDC guidelines for HIV testing practices, arguing that the new policy recommendations are ethically sound and that the only ethical concerns raised would be their potentially improper implementation. In a shortsighted analysis, the authors view the CDC’s decision to universalize HIV testing as a destigmatizing move, because the so-called “high-risk” groups are no longer specifically targeted. But the authors fail to recognize that the CDC’s expansion to general HIV testing is now coupled with a recommendation for specific queer-targeted prevention counseling, indicating that the only population that puts the seronegative general population at risk is sero-positive queers, a spurious conclusion given that their own data shows that 31% of new HIV infections resulted from high-risk heterosexual contact (CDC 2008). The CDC’s recommendations that prevention counseling be provided only to “persons at high risk for HIV” and only in settings “in which risk behaviors are assessed”—i.e., “the STD clinic”—reveal how gay men are routinely deemed sexually dangerous, thereby

Is Disability Conservationism Rooted in Status Quo Bias

diminished or jeopardized? I think that a reasonable, yet very simple, answer could be that genetic diversity is not an absolute, objective value, but rather contextual—just as any other value has been since the end of metaphysics. From this perspective, diversity is a value that needs a particular context (a facticity that is perceived as unfair) in order to ensure its legitimate normative weight. Out of a suitable context, as in the hypothetical cases provided by Sparrow, genetic diversity ceases to be a value with ethical meaning. I believe that the given cases do not primarily relativize the normative weight of the value of diversity for the ethics of genetic selection, but rather they force us to evaluate whether conserving genetic diversity is an appropriate argument to restore inequalities. Finally, we need to answer Sparrow’s final question as to: “Why should we conserve what we would be unwilling to impose?” I think that we can certainly preserve something that we would not dare to impose, provided that we are confident that by those means we can introduce fairness (e.g., the unequal distribution of capabilities). Nevertheless, this confidence can only be justified if by doing so we are actually able to strengthen important values in society (such as solidarity). Without the proper empirical evidence for this claim, justification remains speculative. In fact, imposing diversity by manipulating a medical technique requires a different justification, a different ethical principle behind the decision. In conclusion: Thanks to Sparrow s hypothetical cases we might be able to distinguish between the diverse contexts in which a value like genetic diversity shows a strong normative weight. Nevertheless, Sparrow makes the mistake—and I believe it may be the only mistake in his argumentation—of underestimating the normative difference between the contingent and the hypothetical scenario. Sparrow fails to mention that the value of genetic diversity rests on the ethical principle of fairness only in the contingent case and not in the hypothetical scenario.

Induced Lactation for the Nongestating Mother in a Lesbian Couple

There is no cause for ethical reservation about inducing lactation in nongestating lesbian mothers.

“I Caught It at the Movies”: Reflections on Medical History, Movie Theaters, and the Cinema of Contagion

ABSTRACT Undertaking an examination of the precarious places of the movies and movie theaters in queer lives in the 20th century, this article takes up a series of anecdotal episodes and feature-length films to consider how the space-related stakes of LGBT health have been best understood in literal cinema houses and the narrative cinema projections inside of them. The author argues for an appreciation of LGBT-themed motion pictures as oscillating between perpetuator of queer pathology and its potential solution.

Mapping Queer Bioethics: Space, Place, and Locality

ABSTRACT This article, which introduces the special issue of the Journal of Homosexuality on “Mapping Queer Bioethics,” begins by offering an overview of the analytical scope of the issue. Specifically, the first half of this essay raises critical questions central to the concept of a space-related queer bioethics, such as: How do we appreciate and understand the special needs of queer parties given the constraints of location, space, and geography? The second half of this article describes each feature article in the issue, as well as the subsequent special sections on the ethics of reading literal, health-related maps (“Cartographies”) and scrutinizing the history of this journal as concerns LGBT health (“Mapping the Journal of Homosexuality”).