Assisted Reproduction and Distributive Justice

The Canadian province of Quebec recently amended its Health Insurance Act to cover the costs of In Vitro Fertilization (IVF). The province of Ontario recently de‐insured IVF. Both provinces cited cost‐effectiveness as their grounds, but the question as to whether a public health insurance system ought to cover IVF raises the deeper question of how we should understand reproduction at the social level, and whether its costs should be a matter of individual or collective responsibility. In this article I examine three strategies for justifying collective provisions in a liberal society and assess whether public reproductive assistance can be defended on any of these accounts. I begin by considering, and rejecting, rights‐based and needs‐based approaches. I go on to argue that instead we ought to address assisted reproduction from the perspective of the contractarian insurance‐based model for public health coverage, according to which we select items for inclusion based on their unpredictability in nature and cost. I argue that infertility qualifies as an unpredictable incident against which rational agents would choose to insure under ideal conditions and that assisted reproduction is thereby a matter of collective responsibility, but only in cases of medical necessity or inability to pay. The policy I endorse by appeal to this approach is a means‐tested system of coverage resembling neither Ontario nor Quebec's, and I conclude that it constitutes a promising alternative worthy of serious consideration by bioethicists, political philosophers, and policy‐makers alike.     

The Case for Conserving Disability

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.     

Public reasoning about voluntary assisted dying: An analysis of submissions to the Queensland Parliament,Australia

The use of voluntary assisted dying as an end‐of‐life option has stimulated concerns and debates over the past decades. Although public attitudes towards voluntary assisted dying (including euthanasia and physician‐assisted suicide) are well researched, there has been relatively little study of the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. Using a mix of computational textual mining techniques, keyword study and qualitative thematic coding to analyse public submissions to a parliamentary inquiry into voluntary assisted dying in Australia, this study critically examines the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. The analysis identified complex and potentially contradictory ethical principles being invoked on both sides of the debate. These findings deepen our understanding of the moral basis of public reasoning about end‐of‐life matters and will help to inform future discussions on policy and law reform. The findings underscore the importance of sound normative reasoning and the use of caution when interpreting opinion polls to inform policy.     

Splitting the Difference? Principled Compromise and Assisted Dying

Compromise on moral matters attracts ambivalent reactions, since it seems at once laudable and deplorable. When a hotly‐contested phenomenon like assisted dying is debated, all‐or‐nothing positions tend to be advanced, with little thought given to the desirability of, or prospects for, compromise. In response to recent articles by Søren Holm and Alex Mullock, in this article I argue that principled compromise can be encouraged even in relation to this phenomenon, provided that certain conditions are present (which I suggest they are). In order to qualify as appropriately principled, the ensuing negotiations require disputants to observe three constraints: they should be suitably reflective, reliable and respectful in their dealings with one another. The product that will result from such a process will also need to split the difference between the warring parties. In assisted dying, I argue that a reduced offence of ‘compassionate killing’ can achieve this. I acknowledge, however, that splitting the difference can induce splitting headaches, as there remain certain questions to be answered. Hopefully, however, sufficient work is done here to defend attempts to occupy the middle ground, whether these relate to assisted dying specifically or to other disputed moral matters.     

On the Moral Acceptability of Physician‐Assisted Dying for Non‐Autonomous Psychiatric Patients

Several authors have recently suggested that the suffering caused by mental illness could provide moral grounds for physician‐assisted dying. Yet they typically require that psychiatric‐assisted dying could come to question in the cases of autonomous, or rational, psychiatric patients only. Given that also non‐autonomous psychiatric patients can sometimes suffer unbearably, this limitation appears questionable. In this article, I maintain that restricting psychiatric‐assisted dying to autonomous, or rational, psychiatric patients would not be compatible with endorsing certain end‐of‐life practices commonly accepted in current medical ethics and law, practices often referred to as ‘passive euthanasia’.     

“Capacity”, “best interests”, “will and preferences” and the UN Convention on the Rights of Persons with Disabilities

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) is the most up‐to‐date international legal instrument concerning the rights of persons with disabilities. Such persons are taken to include those with serious mental disorders. According to an authoritative interpretation of a crucial Article (Article 12 ‐ Equal recognition before the law) by the UN CRPD Committee, involuntary detention and treatment of people with mental health disabilities are prohibited under the Convention. Both conventional mental health law and “capacity‐based” law are deemed to violate the Convention. However, some other UN bodies are not in full agreement (for example, the UN Human Rights Committee and the Subcommittee on Prevention of Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment), while others are less explicitly absolutist (for example, the Human Rights Council). Furthermore, strong criticisms of the position of the CRPD Committee have been mounted from a number of academic quarters. These criticisms center on whether the role of a person's ability to make a decision can be ignored, no matter the circumstances. Much of the above debate turns on the concept of “legal capacity” and the now often‐repeated precept that one must always respect the “will and preferences” of the person with a disability. However, “will and preferences” remains undefined. In this paper, I offer an analysis of “will and preferences” that can clarify interventions that may be acceptable or non‐acceptable under the terms of the UN Convention.     

Getting the Balance Right: Conceptual Considerations Concerning Legal Capacity and Supported Decision-Making

The United Nations Convention on the Rights of Persons with Disabilities urges and requires changes to how signatories discharge their duties to people with intellectual disabilities, in the direction of their greater recognition as legal persons with expanded decision-making rights. Australian jurisdictions are currently undertaking inquiries and pilot projects that explore how these imperatives should be implemented. One of the important changes advocated is to move from guardianship models to supported or assisted models of decision-making. A driving force behind these developments is a strong allegiance to the social model of disability, in the formulation of the Convention, in inquiries and pilot projects, in implementation and in the related academic literature. Many of these instances suffer from confusing and misleading statements and conceptual misinterpretations of certain elements such as legal capacity, decision-making capacity, and support for decision-making. This paper analyses some of these confusions and their possible negative implications for supported decision-making instruments and those whose interests these instruments would serve, and advises a more incremental development of existing guardianship regimes. This provides a more realistic balance between neglecting the real limits of those with mental disabilities and thereby ignoring their identity and particularity, and continuing to bring them equally and fully into society.     

Research participation and the right to withdraw

Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute 'right' of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw. This does not imply that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self-defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to 'push' participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to 'screen out' people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on-going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account.     

The Great Ape Project and Disability Rights: Ominous Undercurrents of Eugenics in Action

The Great Ape Project is an international animal rights movement with the goal of extending rights to nonhuman primates. While the authors of this essay are sympathetic with scholars who seek to ensure humane treatment for these species, they are concerned with the growing tendency by those in the project to draw analogies between nonhuman primates and humans with disabilities. It is felt that scholars in the Great Ape Project, ignoring findings from anthropologists who have begun to study the significant sociocultural matrix that has defined and often limited individuals with disabilities, rely on assumptions about disability that can be traced back to the eugenics movement.
The authors of this essay argue that if scholars in the Great Ape Project want to make comparisons between humans and apes, it should be with all humans. They feel it is both unfortunate and scientifically inaccurate for those in the Great Ape Project to blur the boundary between apes and people by dehumanizing individuals with disabilities, individuals for whom human rights are often the most precarious, [great apes, Great Ape Project, disability, eugenics, human rights]     

Suffering at the end of life

In the end‐of‐life context, alleviation of the suffering of a distressed patient is usually seen as a, if not the, central goal for the medical personnel treating her. Yet it has also been argued that suffering should be seen as a part of good dying. More precisely, it has been maintained that alleviating a dying patient’s suffering can make her unable to take care of practical end‐of‐life matters, deprive her of an opportunity to ask questions about and find meaning in and for her existence, and detach her from reality. In this article, I argue that the aims referred to either do not support suffering or are better served by alleviating it. When the aims would be equally well served by enduring suffering and relieving it, the latter appears to be the preferable option, given that the distress a patient experiences has no positive intrinsic value. Indeed, as the suffering can be very distressing, it may not be worth bearing even if that was the best way to achieve the aims: the distress can sometimes be bad enough to outbalance the worth of achieving the goals. Having considered an objection to the effect that a patient can have a self‐regarding moral duty to endure the distress she faces at the end of life, I conclude that the burden of proof is on the side of those who maintain that the suffering experienced at the end of life ought to be endured as a part of dying well.     

Disability prevalence among healthy weight,overweight, and obese adults

Objective:

Obesity is associated with adverse health outcomes in people with and without disabilities. However, little is known about disability prevalence among people who are obese. The purpose of this study is to determine the prevalence and type of disability among adults who are obese.

Design and Methods:

Pooled data from the 2003‐2009 National Health Interview Survey (NHIS) were analyzed to obtain national prevalence estimates of disability, disability type and obesity. The disability prevalence was stratified by body mass index (BMI): healthy weight (BMI 18.5‐<25.0), overweight (BMI 25.0‐<30.0), and obese (BMI ≥ 30.0).

Results:

In this pooled sample, among the 25.4% of US adults who were obese, 41.7% reported a disability. In contrast, 26.7% of those with a healthy weight and 28.5% of those who were overweight reported a disability. The most common disabilities among respondents with obesity were movement difficulty (32.5%) and work limitation (16.6%).

Conclusions:

This research contributes to the literature on obesity by including disability as a demographic in assessing the burden of obesity. Because of the high prevalence of disability among those who are obese, public health programs should consider the needs of those with disabilities when designing obesity prevention and treatment programs.     

EXISTENCE: WHO NEEDS IT? THE NON‐IDENTITY PROBLEM AND MERELY POSSIBLE PEOPLE

In formulating procreative principles, it makes sense to begin by thinking about whose interests ought to matter to us. Obviously, we care about those who exist. Less obviously, but still uncontroversially, we care about those who will exist. Ought we to care about those who might possibly, but will not actually, exist? Recently, unusual positions have been taken regarding merely possible people and the non‐identity problem. David Velleman argues that what might have happened to you – an existent person – often doesn't merit moral consideration since the alternative person one would have been had what might have happened actually happened is a merely possible person about whom one has no reason to care. He argues that his way of thinking can eliminate the non‐identity problem. Caspar Hare argues that merely possible people have interests and are morally relevant. He argues that we can solve the non‐identity problem by rejecting the view that merely possible people are morally irrelevant. Both Hare and Velleman argue that focusing on one's de dicto rather than on one's de re children can help us avoid the non‐identity problem. I analyze the role that merely possible, nonexistent hypothetical entities ought to play in our moral reasoning, especially with regard to procreation. I refute both Velleman's and Hare's views and demonstrate the difficulties we encounter when we try to apply their views to common non‐identity cases. I conclude with the common‐sense view regarding who matters, morally: only those who do, did, or will exist.     

Research Ethics and Intellectual Disability: Broadening the Debates

This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and benefits, and authority through three tensions that emerge when considering these concepts in the context of the Disability Rights Movement and critical disability scholarship. These tensions are defined as the double dangers of inclusion and exclusion; the challenges of defining competence and risk in terms of individuals vs. groups; and the conflicts that arise when pursuing the dual goals of amelioration and elimination of disabilities. Though these tensions are not resolved, they underscore the importance of researchers engaging with critical disability perspectives in order to navigate these complex ethical questions.     

The ethics of ordinary and exact justification in blood donation deferral categories for men who have sex with men

In 2015, the United States Food and Drug Administration (FDA) changed their indefinite deferral policy towards donors who were men who had sex with men (MSM). I develop an empirical case for the current, revised MSM deferral policy and show that rights‐based objections fail. This empirical case, however, misleadingly accounts for an elevated risk for MSM donors because it lumps two distinct kinds of MSM donors into the same category. Building on some recent work that has been published since the revision, I introduce and defend a distinction between MSM donors who have what I call ‘exact justification’ and those who have what I call ‘ordinary justification’. MSM donors with exact justification present no risk with respect to the deferral and should be allowed to donate. I conclude by addressing a practical issue about how primary partner testimony is not enough to create exact justification, but it is enough to sustain it.     

The paradoxes of failure in post-welfare: an auto-ethnography of caregiver labour for disabled persons in New York State

In conditions of post-welfare, failure takes a variety of forms. I offer an auto-ethnographic account of state-funded caregiving for people diagnosed with intellectual and developmental disabilities in New York State, where both caregiver labour and its management have been subjected to greater discipline as post-welfare initiatives seek to re-educate recipients of benefits and careworkers to be simultaneously more autonomous from and more accountable to the state. Placing these changes within the specific history of failed disability care in the United States, I explain how new disciplinary devices for reporting further alienate caregiver labour and complicate welfare management in practice.     

Sperm,Clinics, and Parenthood

In this article I examine a recent approach to regulating assisted reproduction, whereby use of some kind of medical intervention ‘triggers’ laws governing legal parenthood that are more favourable to intending parents and sperm providers. I argue that although perhaps an improvement on the previous legal framework, these laws are problematic for three important reasons. First, they are prone to violating parental rights and unjustly imposing substantial burdens on individuals. Second, they are discriminatory. Third, even if we take a pragmatic approach to the question of parenthood in these cases, these laws fail to properly consider the welfare interests of children. Finally, I conclude by showing that my argument does not entail adopting a laissez‐fair attitude to conception using third‐party sperm.     

‘You are inferior!’ Revisiting the expressivist argument

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter‐arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the expressivist argument has a wide range of underpinnings and that counter‐arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still.     

The Suicide Tourist Trap: Compromise Across Boundaries

Amongst the latest, and ever-changing, pathways of death and dying, “suicide tourism” presents distinctive ethical, legal and practical challenges. The international media report that citizens from across the world are travelling or seeking to travel to Switzerland, where they hope to be helped to die. In this paper I aim to explore three issues associated with this phenomenon: how to define “suicide tourism” and “assisted suicide tourism”, in which the suicidal individual is helped to travel to take up the option of assisted dying; the (il)legality of assisted suicide tourism, particularly in the English legal system where there has been considerable recent activity; and the ethical dimensions of the practice. I will suggest that the suicide tourist—and specifically any accomplice thereof—risks springing a legal trap, but that there is good reason to prefer a more tolerant policy, premised on compromise and ethical pluralism.     

Criticizing and Reforming Segregated Facilities for Persons with Disabilities

In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide forms of social support the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions.     

Visual obstruction and vigilance: a natural experiment

Visual obstructions can cause an increase in antipredator vigilance in prey animals by making predator detection more difficult. However, visual obstructions can also skew the perception of group size and inter‐individual distances and impair the detection of alarm signals by conspecifics. These changes within the group alone can cause an increase in vigilance. To disentangle the contribution of these various factors to changes in vigilance, I documented vigilance in a gregarious species, the semipalmated sandpiper Calidris pusilla, foraging in a habitat where a naturally‐occurring visual barrier partially prevented predator detection without altering the transfer of information about predation risk within the group. I used a matched sampling design to collect vigilance data for birds using adjacent areas with and without the visual barrier. In the visually‐obstructed area, sandpipers maintained a higher level of vigilance, occurred farther away from cover and in smaller flocks, and preferentially scanned the area of danger with one eye in particular. All these changes suggest that visual obstruction increased perceived predation risk. I conclude that it is the inability to get a good view of any approaching predator, rather than changes in intra‐group communication that caused the increase in vigilance in the visually‐obstructed area.