The concept of vulnerability is widely used in bioethics, particularly in research ethics and public health ethics. The traditional approach construes vulnerability as inherent in individuals or the groups to which they belong and views vulnerability as requiring special protections. Florencia Luna and other bioethicists continue to challenge traditional ways of conceptualizing and applying the term. Luna began proposing a layered approach to this concept and recently extended this proposal to offer two new concepts to analyze the concept of vulnerability, (...) namely understanding external conditions that trigger vulnerability and layers of vulnerability with cascading effects. Luna's conception of vulnerability is useful, which we demonstrate by applying her layered view and the new analyses in multiple contexts. We begin by outlining Luna's view and we use vignettes from healthcare involving transgender patients, the care of patients in psychiatric contexts, and research involving prisoners to illustrate how each part of Luna's concept elucidates important moral issues. (shrink)

In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety (...) of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual —people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness. (shrink)

Background: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers’ perceptions and attitudes, as well as facility policies. Objective: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy (...) in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. Research Design: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers’ attitudes, and institutional roadblocks to enabling residents’ sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. Participants and Research Context: No research participants were part of this analysis. Ethical Considerations: This article offers a conceptual analysis and normative framework only. Findings: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. Discussion: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents’ sexual preferences over time, and taking advantage of ethics consultation services. Conclusion: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities. (shrink)

This book offers new essays exploring concepts and applications of nonideal theory in bioethics. Nonideal theory refers to an analytic approach to moral and political philosophy (especially in relation to justice), according to which we should not assume that there will be perfect compliance with principles, that there will be favorable circumstances for just institutions and right action, or that reasoners are capable of being impartial. Nonideal theory takes the world as it actually is, in all of its imperfections. Bioethicists (...) have called for greater attention to how nonideal theory can serve as a guide in the messy realities they face daily. Although many bioethicists implicitly assume nonideal theory in their work, there is the need for more explicit engagement with this theoretical outlook. A nonideal approach to bioethics would start by examining the sociopolitical realities of healthcare and the embeddedness of moral actors in those realities. How are bioethicists to navigate systemic injustices when completing research, giving guidance for patient care, and contributing to medical and public health policies? When there are no good options and when moral agents are enmeshed in their sociopolitical viewpoints, how should moral theorizing proceed? What do bioethical issues and principles look like from the perspective of historically marginalized persons? These are just a few of the questions that motivate nonideal theory within bioethics. This book begins in Part I with an overview of the foundational tenets of nonideal theory, what nonideal theory can offer bioethics, and why it may be preferable to ideal theory in addressing moral dilemmas in the clinic and beyond. In Part II, authors discuss applications of nonideal theory in many areas of bioethics, including reflections on environmental harms, racism and minority health, healthcare injustices during incarceration and detention, and other vulnerabilities experienced by patients from clinical and public health perspectives. The chapters within each section demonstrate the breadth in scope that nonideal theory encompasses, bringing together diverse theorists and approaches into one collection. (shrink)

The covert administration of medication occurs with incapacitated patients without their knowledge, involving some form of deliberate deception in disguising or hiding the medication. Covert medication in food is a relatively common practice globally, including in institutional and homecare contexts. Until recently, it has received little attention in the bioethics literature, and there are few laws or rules governing the practice. In this paper, we discuss significant, but often overlooked, ethical issues related to covert medication in food. We emphasise the (...) variety of ways in which eating has ethical importance, highlighting what is at risk if covert administration of medication in food is discovered. For example, losing trust in feeders and food due to covert medication may risk important opportunities for identity maintenance in contexts where identity is already unstable. Since therapeutic relationships may be jeopardised by a patient’s discovery that caregivers had secretly put medications in their food, this practice can result in an ongoing deception loop. While there may be circumstances in which covert medication is ethically justified, given a lack of suitable alternatives, we argue that in any particular case this practice should be continually re-evaluated in light of the building moral costs to the relational agent over time. (shrink)

How can social institutions complicate and worsen vulnerabilities of particular individuals or groups? We begin by explicating how certain diagnoses within mental health and medicine operate as interactive kinds of labels and how such labels can create institutional barriers that hinder one's capacity to achieve wellbeing. Interactive-kind modeling is a conceptual tool that elucidates the ways in which labeling can signal to others how the labeled person ought to be treated, how such labeling comes about and is perceived, and how (...) it compounds vulnerabilities. We argue that this shift in standpoint helps us recognize and mitigate compounded vulnerabilities. (shrink)

At its core, nonideal theory is an attempt not only to address issues of justice, but it also provides us a lens through which we can articulate our limitations as knowers and reasoners, the ways in which we are relational in our autonomy needs, and the ways in which we are deeply dependent upon institutions and social supports for our agency and identities. Bringing this lens into bioethics means shifting our orientation in our scholarship and our practice. This shift will (...) have implications in how bioethical evaluations are taken up and played out in policies, institutional structures that inform the clinical encounter, and avenues for protection and redress for marginalized and vulnerable populations. It will also allow theorists and researchers to interrogate the status quo, revealing how many standard policies and practices are embedded in social and institutional arrangements that privilege the few or are built on exclusionary norms. The path forward, and the aim of this volume, is to extend the scholarship of nonideal approaches to bioethics. The volume is divided into two main parts. The first is focused on philosophically unpacking nonideal theory as an approach in bioethics. The second offers applications of nonideal theory in environmental ethics, healthcare ethics, public heath ethics, and genetic ethics. Our collective aim is to expand what has been considered nonideal bioethics. The history of nonideal theory has as its point of reference a turn away from Rawlsian justice, but the future of nonideal theory is ripe with possibilities. (shrink)

While many books on ethics contain a chapter discussing prisoners’ rights and the ethical dimensions of research involving incarcerated persons, Vulnerability and Incarceration is the first monograph devoted to the subject. Victor interrogates the concept of vulnerability to examine prisoners’ right to medical research from a novel point of view.

We argue that we have obligations to future people that are similar in kind to obligations we have to current people. Modifying Michael Bratman’s account, we argue that as planning agents we must plan for the future to act practically in the present. Because our autonomy and selfhood are relational by nature, those plans will involve building affiliative bonds and caring for others. We conclude by grounding responsibility to future others by the way we plan through our social institutions. Our (...) account fills out the story of responsibility to future generations by referring only to ourselves, our practical identities, and practical reason. (shrink)

I argue that same-sex divorce presents a different kind of potential constraint to the agency of persons pursuing the dissolution of their marriage; a constraint upon one’s counterstory and the reconstitution of one’s personal identity. The dialectic within the paper mirrors the movements that I have had to make as I have sought to constitute and reconstitute myself throughout my divorce process. Beginning from a juridical perspective, I examine how the constraints on same-sex divorce present constraints on one’s agency that (...) are antithetical to the spirit of a liberal democratic conception of freedom of movement. I then explore the role of narrative in my self-(re)constitution, as well as the limits of the narrative and counterstories, when the institutional framework of the State fails to acknowledge the change in my State-sanctioned personal relationship. I end by arguing that this view from the law ignores the ways in which we relationally constitute ourselves, and in so doing covers over the harms done to persons that find themselves in a married-yet-not state of limbo. (shrink)

Although there has been significant attention in clinical ethics to when physicians should follow a parent’s wishes, there has been much less discussion of the obligation to solicit viewpoints and decisions from all caregivers who have equal moral and legal standing in relation to a pediatric patient. How should healthcare professionals respond when one caregiver dominates decision making? We present a case that highlights how these problems played out in an ethical bargain. Ethical bargaining occurs when the parties involved choose (...) not to pursue a morally preferable option for the sake of coming to a resolution. This case is not one of parental disagreement; rather, the medical team agreed to exclude the patient’s mother from decision making if the patient’s father promised to bring their son back to the hospital for necessary medical tests. We argue that there is an obligation to notice and acknowledge power asymmetries in the family unit, which, in this case, was manifested as the marginalization of the female decision maker by the male decision maker. In these scenarios, clinicians should be careful to avoid treating parents as one homogenous unit, and they should take action to enable caregivers’ autonomy and voice. While there are moral and practical limits to how and when physicians should intervene in family dynamics, we discuss the steps that the medical team should have taken in this case to avoid undermining the parental authority of the mother. We conclude by offering recommendations to address and enable caregivers’ autonomy at an institutional level, and we discuss the importance of tracking and responding to damaging family dynamics to prevent ethically impermissible bargaining. (shrink)

Scientists, clinicians, and bioethicists are worried about how so‐called personhood measures would limit access to certain types of contraception, research involving stem cells, and access to fertility treatments. While these measures have been struck down in Colorado, South Dakota, California, and Mississippi, the bill signed into law in Oklahoma in February deserves critical scrutiny, particularly into the ways these legal measures influence eligibility for clinical research. Oklahoma's bill states that the laws of the state “shall be interpreted and construed to (...) acknowledge on behalf of the unborn child at every stage of development all the rights, privileges, and immunities available to other persons, citizens, and residents of this state.”. (shrink)

In his recent work exploring the role of science in democratic societies Kitcher claims that scientists ought to have a prominent role in setting the agenda for and limits to research. Against the backdrop of the claim that the proper limits of scientific inquiry is John Stuart Mill’s Harm Principle , he identifies the limits of inquiry as the point where the outcomes of research could cause harm to already vulnerable populations. Nonetheless, Kitcher argues against explicit limitations on unscrupulous research (...) on the grounds that restrictions would exacerbate underlying social problems. I show that Kitcher’s argument in favor of dissuading inquiry through conventional standards is problematic and falls prey to the same critique he offers in opposition to official bans. I expand the conversation of limiting scientific research by recognizing that the actions that count as ‘science’ are located in the space between ‘thinking’ and ‘doing’. In this space, we often attempt to balance freedom of research, as scientific speech, against the disparate impact citizens might experience in light of such research. I end by exploring if such disparate impact justifies limiting research, within the context of the United States, under Title VII of the Civil Rights Act of 1964 or under international human rights standards more generally. (shrink)

As a feminist bioethicist, I have frequently wondered why the exclusion of pregnant women has been the default position for most clinical research and how social values have influenced this decision. Relatedly, I wonder what responsible research involving pregnant women would look like. As a theorist who conducts research on the concept of vulnerability, I have often wanted to know why there has been so little research into the harmful effects of the routine exclusion of pregnant women, including questions such (...) as: What do pregnant women actually think about participating in research? How should we treat pregnant women and their fetuses for the purposes of consent (are they two separable persons or one complex... (shrink)