Assisted dying is a divisive and controversial topic and it is therefore desirable that a broad range of interests inform any proposed policy changes. The purpose of this study is to collect and synthesize the views of an important stakeholder group—namely people with disabilities —as expressed by disability rights organisations in Great Britain. Parliamentary consultations were reviewed, together with an examination of the contemporary positions of a wide range of DROs. Our analysis revealed that the vast majority do not (...) have a clear public stance; those that do exhibit a significant diversity of opinion. DROs opposing legislation on assisted dying have argued that it would be premature, misguided, inequitable and culturally undesirable. Some specify conditions that would have to be satisfied before they could support legalisation, such as radical improvements in health and social care services and the elimination of discrimination against PwD. DROs supporting assisted dying maintain that a change in the law would promote autonomy, end intense suffering, can be delivered safely and is supported by the DRO’s membership. The discussion considers the reasons why several DROs adopt a neutral stance and the argument is made that, whatever their overarching stance on the issue, DROs need to be involved in the policy debate so that the crucial perspectives of PwD are heard and addressed. This is an important message for countries around the world that permit, or are considering legalising, assisted dying. (shrink)

This essay discusses the ethical challenges and dilemmas in allocating scarce medical resources during the COVID-19 pandemic, using the German legislative process as a starting point. It is guided by the right to non-discrimination of people with disability and generally contrasts utilitarian and rights-based principles of allocation. Three approaches that were suggested in the German discussion, are presented, the lottery principle, the first come first served principle and the probability to survive principle. Arguments in favour and against each principle (...) are discussed. The focus is on the utilitarian probability to survive principle, which was adopted in German legislation in 2022, and its discriminatory potential against people with disability. The essay suggests ways to mitigate the concerns of discrimination related to the probability to survive principle. It concludes that resolving the triage dilemma requires a balanced approach between utilitarian and rights-based concerns, which promotes both maximising the number of patients surviving and the right not to be discriminated against and be treated equally. It calls for a further debate on how many ethical values such as equity, fairness and non-discrimination we are willing to sacrifice for a higher number of survivors and when we are willing to sacrifice survivors to secure ethical values. (shrink)

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance (...) Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability. (shrink)

In developed economies, powerful legislative and regulatory frameworks, for people with disability over the last five decades, have provided major motivation for business compliance with disability in the workplaces. However, developing economy like India is marked by emergent disability legislation, weak institutional enforcement and an evolving disability rights movement. In the absence of strong institutional expectations, the private sector’s role in mainstreaming the disability agenda has been largely an act of voluntary participation. Drawing upon an (...) in-depth, multilevel, cross-functional qualitative study of four Indian information technology sector companies, this paper explores why these companies engage in pro-social corporate behaviour in favour of disability. The study locates itself in the context of conceptualization of PWD as employee stakeholders and the literature on strategic CSR. The findings reveal that strategic factors promote voluntary business engagement with disability at workplaces and contribute to understanding of workplace integration of minority employees. (shrink)

Breaking with discriminatory views and segregated education for children with disabilities, regions often referred to as Confucian Heritage Regions (CHRs) have been moving towards inclusive education. Although some of these regions have been at the centre of attention in global education recently, there is a lack of research and information about how they ‘do’ inclusive education. Considering that reinforcing legislative foundations is of foremost importance for its fulfillment, this study examines legislation on the education of children with disabilities in four (...) neighbouring CHRs: the Chinese Mainland, Japan, South Korea and China's Taiwan. The core principles that frame such legislation were analyzed and cross-compared. The findings show that despite the common Confucian heritage that is attributed to them systematically in studies of inclusive education – which is often said to influence the way disability is perceived and dealt with – the four Regions treat inclusion differently in terms of legislation. While some CHRs are clearly influenced by e.g. the USA, others are trying to design a specific perspective on inclusive education. The authors argue that the complex example of these CHRs can serve as an important template for studies on both inclusive and comparative education. The article also calls for the careful treatment of inclusive education beyond an essentialist and somewhat simplistic perspective that could reduce certain regions to a monolith. (shrink)

This collection pays tribute to Jerome E. Bickenbach’s work that spans from philosophical and sociological issues to international legislation designed to support the rights of people with disabilities. Eight essays critically engage with Bickenbach’s work to further advance the discussions he has initiated throughout his career.

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End-of-Life Decision-Making report, published (...) in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision-making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities. (shrink)

The British Parliament stated that health services would be covered by the Disability Discrimination Act 1995 . However, when people with disabilities are at their most vulnerable, for example when in hospital or subject to medical procedures, the antidiscrimination law fails them. A review of cases indicates that when people with disabilities are subject to medical treatment, the legislative protections are allowed to vanish. Instead, medical decisions are justified on obscure notions such as “best interests”, often with irreversible or (...) even terminal results. This article examines the relevant provisions and limitations of the act, the features of notable non-treatment decisions, and the act's potential to guide future decision making. It argues that antidiscrimination legislation should be assertively applied to protect vulnerable people. (shrink)

The symposium in this issue, on equality and disability, helps to clarify some areas of continuing disagreement in disability studies, but also uncovers substantial consensus. All of the contributors appear to endorse John Harris's statement that “No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth, or value”.1 It seems safe to assume, moreover, that few if any readers of the Journal of Medical Ethics are likely to disagree with this, or indeed (...) to challenge Kate Diesfeld's initial assumption that “Generally speaking, it is both immoral and unlawful to discriminate between people on the ground of disability”.2Some, of course, might challenge Diesfeld's choice of the word “between” rather than “against”. What is generally agreed to be both immoral and unlawful is discrimination in the modern sense of treating people unjustly on the basis of distinctions that are not morally relevant to the matter in hand. It is neither immoral nor illegal, for example, for a transport employee to discriminate between members of the travelling public in order to offer some but not others the use of a wheelchair or a wheelchair ramp. Nor is it immoral or illegal for society to discriminate between its members through legislation which offers, to some but not others, special forms of aid or protection, based on the recognition of their respective disabilities.Legislation designed to protect people …. (shrink)

The distinction between students diagnosed with a learning disability and those considered merely slow learners is based on conceptually flawed assumptions that: 1) LD represents a brain dysfunction while SL does not; 2) LD is a well-defined disorder; 3) valid measurement instruments distinguish LD and SL; 4) special education for students with LD is fundamentally different from that for SL students. These erroneous beliefs are maintained because governmental legislation transformed a diagnosis of LD into an admission ticket to a (...) variety of government entitlements thereby subjecting it to political, legal, social and ideological forces. (shrink)

Sex selection and disability avoidance receive opposed treatment in bioethics literature, legislative practice and public opinion. However, some theorists question this state of affairs by drawing analogies between the harmful consequences of these practices. This paper shares their disapproval of gender selection and disability avoidance, but bases its resistance to these practices on an examination of the concepts of gender and disability. Here it identifies conceptual confusions as another cause of approval of sex selection and disability (...) avoidance. Further, in clarifying the nature of the concepts at issue, and their relationship with the subjects that they apply to, this discussion highlights the existence of relevant analogies between the concepts of gender and disability. Here the social construction and universality of gender and disability allow their differential treatment to be resisted at the conceptual level, creating a strong foundation for more consequentialist arguments against sex selection and disability avoidance. (shrink)

Serious concerns about pervasive, persistent, and unjustified social inequalities have prompted a small—but growing—number of academic commentators to raise some hard and troubling questions for those who would like to legalize physician-assisted suicide. In various ways, these commentators have asked: In light of existing social inequalities—inequalities that operate, for example, along sometimes intersecting lines of race, class, age, sex, and disability—how persuasive are autonomy-based arguments in favor of legalization of assisted suicide when those arguments depend on a conception of (...) autonomy that either presupposes social equality or does not expressly account for its absence? How compelling are arguments that we ought to legalize assisted suicide out of feelings of mercy for the sick and dying, when such affective expressions may actually be the socially acceptable manifestation of private ambivalence that includes merciless discrimination? (shrink)

Serious concerns about pervasive, persistent, and unjustified social inequalities have prompted a small—but growing—number of academic commentators to raise some hard and troubling questions for those who would like to legalize physician-assisted suicide. In various ways, these commentators have asked: In light of existing social inequalities—inequalities that operate, for example, along sometimes intersecting lines of race, class, age, sex, and disability—how persuasive are autonomy-based arguments in favor of legalization of assisted suicide when those arguments depend on a conception of (...) autonomy that either presupposes social equality or does not expressly account for its absence? How compelling are arguments that we ought to legalize assisted suicide out of feelings of mercy for the sick and dying, when such affective expressions may actually be the socially acceptable manifestation of private ambivalence that includes merciless discrimination? (shrink)

Prenatal and preimplantation testing technologies have offered unprecedented access to information about the genetic and congenital makeup of our prospective progeny. Future developments such as preconception testing, non-intrusive prenatal testing and more extensive preimplantation testing promise to increase that access further still. The result may be greater reproductive choice, but it also increases the burden on women and men to avail themselves of these technologies in order to avoid having a child with a disability. The overwhelming question for legislators (...) has been whether and, if so, how to regulate the use of these technologies in the face of compelling but seemingly contradictory claims about the advancement of reproductive choice and the dangers of eugenic or discriminatory effects. This book examines the evolution of this legislative oversight across a number of jurisdictions and explores the tensions and ambiguities that inform these laws. (shrink)

pt. 1. Background you need. -- What is brain-compatible teaching -- The old and new of it -- When brain research is applied to the classroom everything will change -- Change can be easy -- We're not in Kansas anymore -- Where's the proof -- Tools for exploring the brain -- Ten reasons to care about brain research -- The evolution of brain models -- Be a brain-smart consumer: recognizing good research -- Action or theory: who wants to read all (...) that research -- Excellent sources of research -- Fun factoids on the brain -- What's in the human brain -- Brain teaser -- The brain divided -- The brain connected -- Brain geography -- Brain "cell" ebration: far-out facts about brain cells -- Learning happens but how -- Are today's kids different -- Boy's and girl's brain differences -- Learning disabilities; different brains -- The cranial soup bowl: understanding the chemicals in our brains -- pt. 2. The foundation for teaching is principles, not strategies. What are the principles -- Principle 1: the principle of change: brain is dynamic, not fixed -- Principle 2: the principle of variety: all brains are unique -- Principle 3: the principle of developmental sensitivity -- Principle 4: the principle of interaction: we have a social brain -- Principle 5: the principle of connectivity: the brain is an integrated system of systems -- Principle 6: the principle of memory malleability -- Principle 7: the principle of resource consumption -- necessity for processing -- pt. 3. So what; now what. Asking big questions: what's in a brain-compatible curriculum -- Brain-compatible test-taking success strategies -- Systemic change: the next level -- Big picture analysis: transformation happens -- Action research makes a difference -- The learning community -- What's next. (shrink)

In this paper, I examine how an organization narratively constructs its prototypical disabled employee. Data comprise public narratives of the Government of India, the country’s largest employer of disabled persons. Narratives during 2008–2016 were considered as this timespan witnessed the design of inclusive legislation that emphasized defining disabled persons and their entitlements. Findings indicate that the label of “disadvantage” was consistently used to portray the target employee. Alongside other narrative material suggesting, for example that the target employee was someone who (...) required employment assistance, this label was supplied to external audiences to convert them into potential partners. This supply of narrative material further reinforced the portrayal of the target employee. Consistent use of this expansive label subsumed changing definitions of who is a disabled person, allowed for aggregations with diverse disadvantaged collectives, and accommodated changes in employment entitlements and ecosystem partners, thereby allowing the reading of change in stable narratives. The contributions of this paper lie in highlighting how the consistent use of an expansive label can cast narrative stability and change as complementary, and in suggesting that narrating a prototypical employee entails shaping the setting outside the employing organization toward employee categorization. (shrink)

Purpose In 2006, the United Nations established the convention on the rights of persons with disabilities. Simultaneously, the UN has adopted the sustainable development goals in 2015 and the 17 goals must be achieved by member states by 2030. Regionally, countries within the Caribbean community have formulated the Kingston Accord and the Declaration of Petion Ville. Both of these two instruments outlined a regional framework on the issue of persons with disabilities. The media, therefore, have axiological roles to play in (...) educating and informing all the stakeholders of these programmes, policies and legislation. It is within this context that this researcher did a qualitative assessment of how the media within Caribbean societies have been aiding the process of developmental transformation for PWDs. The main purpose of this paper therefore; is to show that if the varied programmes and policies relating to PWDs within the Anglophone Caribbean are to be successfully implemented, digital and traditional media will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. The main purpose of this paper therefore; is to show that if the varied programmes and policies relating to PWDs within the Anglophone Caribbean are to be successfully implemented, digital and traditional media will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. Design/methodology/approach The central argument guiding this paper is that if the varied programmes and policies relating to PWDs within the Caribbean are to be successfully implemented, the media, in all its forms, will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. The unequivocal questions that have been answered are how and what are the media doing to aid in the transformation of the lives of PWDs in the Caribbean? Are they fulfiling their social and ethical responsibilities? Findings The major finding is that the media in the Anglophone Caribbean has significant work to do to fulfil one of its social and ethical responsibilities in aiding the developmental transformation of PWDs in the region. Research limitations/implications The research is limited by the fact that there is serious data scarcity on the population of PWDs in the region. Serious research on the population is just emerging and this will change significantly over the next few years. Practical implications The practical implication of this study is that it will bring to the forefront of the media in the Caribbean, the importance of placing issues relating to PWDs on the development agenda in a consistent manner. Social implications PWDs will be brought in the mainstream of Caribbean society over time. Originality/value This is an original study and will undoubtedly contribute to a greater understanding of the media and PWDs in the Caribbean. (shrink)

This letter was submitted to the Senate Standing Committee on Legal and Constitutional Affairs, Government of Canada, on 29th January, 2021, as final debate over Bill C-7 was being undertaken in the Senate regarding MAiD and the strong opposition to the legislation expressed across the Canadian disability community. It draws on our individual and joint work on eugenics, well-being, and disability.

National, European, and international institutions should implement social policies to help the persons with disabilities. Strategic sectors include education, training, and work, with the equal protection of the laws. In addition, this essay is focused on another crucial “sector" that is part of the primary law, which include tourism along with public transportation and non-discrimination. In conclusion, legislators, and public institutions, as well as transport companies must comply the principles of accessibility, equality, and social justice for the social inclusion of (...) persons with disabilities. (shrink)

Following the acquittal of Dr Leonard Arthur in the case of the Down's syndrome infant the co-authors of the first paper in this symposium prepared a draft bill on the treatment of chronically disabled infants which has since been informally commended by the Director of Public Prosecutions. A second contributor, a law student, also argues for legislation as being the most effective way for society to have its standards clarified and observed. In a final paper Dr Havard, Secretary of the (...) British Medical Association, opposes legislation believing it would raise far more problems than it would resolve. The first article was originally published in the Law Society's Gazette. (shrink)

The right to active participation by disabled people in academic research has been discussed at length in recent years, along with the potential for such research to function as a tool in challenging oppression and pursuing disability rights. Significant ethical, legal and methodological dilemmas arise, however, in circumstances where a disabled person loses the capacity to provide informed consent to such participation. In this article, I consider disability politics and academic research in the context of the Mental Capacity (...) Act 2005, which sets out in Anglo-Welsh law the circumstances and requirements for research participation by individuals lacking the capacity to provide informed consent. Drawing on my own perspective on research participation in relation to physical and psychosocial disability, I consider the implications of my potential future loss of capacity for my right to participate in disability-related research. I examine the barriers to such participation and suggest that partial solutions may be found in the advance decision-making and advance care-planning frameworks of the MCA 2005 and related policy, but that current legislative and policy frameworks nevertheless still curtail my rights with regard to research participation on loss of capacity to consent. In so doing, I seek to provoke debate concerning what this legislative provision means for the disability rights movement, and the possibilities and challenges it presents to the movement’s commitment to ‘nothing about us without us’. (shrink)

The wording of major human rights texts—constitutions and international treaties—is very similar in those provisions, which guarantee everyone the right to family, privacy, protection against discrimination and arbitrary detention, and the right to access the court. However, judges of lower national courts, constitutional judges and judges of the European Court of Human Rights often read the same or seemingly the same texts differently. This difference in interpretation gives rise not only to disputes about the hierarchy of interpretative authorities, but to (...) more general disputes about limits of judicial construction and validity of legal arguments. How it may happen, that the national courts, which apply constitutional provisions or provisions of national legislative acts, which are seemingly in compliance with the international human rights standards, come to different results with the international judges? Do they employ different interpretative techniques, share different values or develop different legal concepts? Do international judges ‘write’ rather than ‘read’ the text of the Convention? Who is, in Plato’s terms, a name-giver and who has a power to define the ‘correctness’ of names? The answers to these questions from the rhetorical and semiotic perspectives are exemplified by the texts of the judicial decisions on the rights of persons with mental disabilities. (shrink)

This study assesses the extent to which job application forms violate the New Zealand Human Rights Act. The sample for the study includes 229 job application forms, collected from a variety of large and small, public- and private-sector organizations that together employ approximately 200,000 workers. Two hundred and four or 88% of the job application forms contain at least one violation of the Act. One hundred and sixty five or 72% contain two or more and 140 or 61% contain three (...) or more violations. The most common violations concern age, gender, nationality, and disability. The least common concern political opinion, ethical belief, religious belief, and sexual orientation. Despite widespread violations, many forms do have non-discriminatory questions that yield the same kind of useful information as discriminatory questions. Employers could incorporate these into their job application forms to bring themselves into compliance with the law. The same lessons also generally apply to North American employers, given the high degree of comparability between American, Canadian, and New Zealand anti-discrimination laws. (shrink)

This article defends the classical liberal view of human interactions that gives strong protection to associational freedom except in cases that involve the use of force or fraud or the exercise of monopoly power. That conception is at war with the modern antidiscrimination or human rights laws that operate in competitive markets in such vital areas as employment and housing, with respect to matters of race, sex, age, and increasingly, disability. The article further argues that using the “human rights” (...) label to boost the moral case for antidiscrimination laws gets matters exactly backwards, given that any program of forced association on one side of a status relationship (employer, not employee; landlord, not tenant) is inconsistent with any universal norm governing all individuals regardless of role in all associative arrangements. The articled also discusses the tensions that arise under current Supreme Court law, which protects associational freedom arising out of expressive activities (as in cases involving the NAACP or the Boy Scouts), but refuses to extend that protection to other forms of association, such as those involving persons with disabilities. The great vice of all these arrangements is that they cannot guarantee the stability of mandated win/lose relationships. The article further argues that a strong social consensus against discrimination is insufficient reason to coerce dissenters, given that holders of the dominant position can run their operations as they see fit even if others do otherwise. It closes with a short model human rights statute drafted in the classical liberal tradition that avoids the awkward line drawing and balancing that give rise to modern bureaucracies to enforce modern antidiscrimination laws. (shrink)

This paper discusses legal and ethical issues related to genetic screening. It is argued that persons identified with actual or perceived deleterious genetic markers are protected by the American with Disabilities Act of 1990 and the Civil Rights Act of 1991, if members of a protected group, regardless of whether or not they are currently ill. However, legislation may not protect all employees in all scenarios, in which case, ethical principles should guide decision-making. In doing so a model of preventive (...) ethics is proposed to better understand the multiple levels on which this issue resides. (shrink)

RESUMEN: Este artículo analiza el sentido e implicaciones del Artículo 12 de la Convención Internacional sobre los Derechos de las Personas con Discapadad a la luz de la Observación General Nº1 de su Comité y se centra en determinar su impacto en el régimen general de atribución de personalidad y capacidad jurídica y en el ámbito del Derecho Privado y de Familia del Estado de Qatar. ABSTRACT: This paper analyzes the meaning and implications of Article 12 of the International Convention (...) on the Rights of Persons with Disabilities in the light of the General Comment No. 1 of its Committee. It focuses on determining the impact of this General Comment to the general regime of personality and capacity attribution in the field of Private law and Family law on Qatar. PALABRAS CLAVE: capacidad jurídica, CDPD, derecho privado, legislación qatarí. KEYWORDS: legal capacity – CRPD – private law – Qatari legislation. (shrink)

The harm usually associated with psychopathy requires therapeutically, legally, and ethically satisfactory solutions. Scholars from different fields have, thus, examined whether empirical evidence shows that individuals with psychopathic traits satisfy concepts, such as responsibility, mental disorder, or disability, that have specific legal or ethical implications. The present paper considers the less discussed issue of whether psychopathy is a disability. As it has been shown for the cases of the responsibility and mental disorder status of psychopathic individuals, we argue (...) that it is undecided whether psychopathy is a disability. Nonetheless, based on insights from disability studies and legislations, we propose that interventions to directly modify the propensities of individuals with psychopathic tendencies should be balanced with modifications of the social and physical environments to accommodate their peculiarities. We also suggest how this social approach in some practical contexts that involve non-offender populations might be effective in addressing some of the negative effects of psychopathy. (shrink)

The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger that the genetic (...) information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU. (shrink)

So-called “ugly laws” were mostly municipal statutes in the United States that outlawed the appearance in public of people who were, in the words of one of these laws, “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” (Chicago City Code 1881). Although the moniker “ugly laws” was coined to refer collectively to such ordinances only in 1975 (Burgdorf and Burgdorf 1975), it has become the primary way to refer to such laws, (...) which targeted the overlapping categories of the poor, the homeless, vagrants, and those with visible disabilities. Enacted and actively enforced between the American Civil War (1867) and World War I (1918), such laws and their enforcement can tell us much about the very sorts of people who were also, a generation later, subject to explicitly eugenic laws, such as sterilization legislation. And like eugenic laws and policies, such laws continue to affect the lives of people with disabilities to this day (Schweik 2011). (shrink)

In 2006, a WHO survey found evidence of a substantial increase in patient-led litigation against health authorities and funders over access to medicines around the world. New Zealanders have seldom litigated denials of access to health care. Part of the explanation lies in the fact that New Zealand has a legislated patients' "bill of rights", with enforcement through a complaints mechanism. Although the separate regime does not afford patients substantive legal protection in respect of complaints about lack of access to (...) care, this form of alternative, low-level resolution of health care disputes does condition disgruntled patients not to turn to the courts for legal redress in relation to their rights. But given the increasing need for prioritization arising from serious concern about the sustainability of the public health system, as well as a trend towards greater explicitness when it occurs, increased disappointment on behalf of patients and the public when care is denied or limited seems inevitable. This may well translate into increased patient-led litigation against health boards and funders. Part 1 provides an overview of the New Zealand health system, with a focus on the points at which resource allocation decisions are made, the identity of the decision-maker, and the methods by which priority-setting occurs. Part 1.1 describes inequalities between population groups in New Zealand, both in health outcomes and in access to health care. Part 2 describes the legal framework surrounding the health and disability sector, and discusses the lack of legislated rights to health and the limited right of access to health care in legislation, despite the existence of a legally enforceable Code of Health and Disability Services Consumers' Rights. (shrink)

In 2019, a new national Ethics Review Authority (Etikprövningsmyndigheten, EPM) was created in Sweden. In 2020, Sweden’s Ethical Review of Research Involving Humans Act was revised, tightening this legislation, and increasing penalties for its infraction. This article draws on empirical material generated by artistic research conducted with a norm-critical contemporary music ensemble. Two of the musicians who collaborated with this research identify as disabled. Consequently, in accordance with EPM, my artistic research was subject to mandatory ethics review. Reflecting critically on (...) my own experience of seeking ethical approval for this artistic research project, I show how EPM’s process of ethics review enacts scientific boundary work in Sweden that privileges the interests of academic disciplines that are already well-established. As a corrective to EPM’s scientific boundary work I propose the application of an ethics of care that recognises the complex relationalities that exist between research institutions, researchers and research participants. (shrink)

Legislation on Disability/ Functional Diversity in Spain has experimented a great advance since 1982 to 2013, leaving the initial orientation, based on care and rehabilitation, toward another one based on rights and social inclusion as main objectives. However, this legislation has not been effective because in the same lap of time another transformation made it useless: the suppression of social rights that came from Keynesian politics and the progressive neoliberal ideology implantation. The evolution of People with Disability/ Functional (...) Diversity labour situation illustrates the imposition of what we name neoliberal “ableisment” over PFD labour rights. (shrink)

The concept of school inclusion applied to disabled children knows an international distribution and is more or less used in national contexts, but with wide variations in interpretation. The concept of disability tends to be supplanted by other terms such as «special needs». These notional transformations are at the heart of the tensions that exist within the education system and also perform in their relations with various external partners, including experts of disability and parents. The major issues are (...) those of the educational finalities of the institutions and practices for these children: separate or common socialization, people development or acquisition of knowledge, perspectives of skilled labor or not etc. Among the possible approaches to the current problem, the first step is the analysis of the regulatory and institutional legislative, established in France for so-called «disabled» children. The second step is favored by the approach of ethnographic field which has the advantage of showing the representations and practices of actors in everyday life. The example developed is that of an elementary school in the city of Paris, which seeks to meet the challenge of hosting the difference while maintaining the goal of «academic excellence.» In this tension, how are teachers, specialists, parents, children with disabilities among their peers? What finally are the evolutions outlook? (shrink)

The case of Terri Schiavo, a young woman who spent 15 years in a persistent vegetative state, has emerged as a watershed in debates over end-of-life care. While many observers had thought the right to refuse medical treatment was well established, this case split a family, divided a nation, and counfounded physicians, legislators, and many of the people they treated or represented. In renewing debates over the importance of advance directives, the appropriate role of artificial hydration and nutrition, and the (...) responsibilities of family members, the case also became one of history's most extensively litigated health care disputes. The Case of Terri Schiavo assembles a team of first-hand participants and content experts to provide thoughtful and nuanced analyses. In addition to a comprehensive overview, the book includes contributions by Ms. Schiavo's guardian ad litem, a neurologist and lawyer who participated in the case, and scholars who examine issues related to litigation, faith, gender, and disability. The volume also includes a powerful dissent from the views of many scholars in the bioethics community. The book is intended for students, health care professionals, policy makers, and other in search of carefully reasoned analyses of the case that will shape our view of death and end-of-life medical care for decades. (shrink)

Discrimination, understood as differential treatment of individuals on the basis of their respective group memberships, is widely considered to be morally wrong. This moral judgment is backed in many jurisdictions with the passage of equality of opportunity legislation, which aims to ensure that racial, ethnic, religious, sexual, sexual-orientation, disability and other groups are not subjected to discrimination. This chapter explores the conceptual underpinnings of discrimination and equality of opportunity using the tools of analytical moral and political philosophy.

Since the 1970s, sexual assault laws have evolved to include prohibitions of sexual acts with cognitively impaired individuals. The argument justifying this prohibition is typically as follows: A sex act that is forced (without the legally valid consent of) someone is sexual assault. Cognitively impaired individuals, because they lack certain intellectual abilities, cannot give legally valid consent. Therefore, cognitively impaired individuals cannot consent to sex. Therefore, sex acts with cognitively impaired individuals is sexual assault. The prohibition of sex with such (...) individuals is regarded by many as a significant advance. It certainly seems to be an improvement upon the days in which individuals could engage in sex with cognitively impaired adults with impunity regardless of the physical, emotional and psychological consequences such sex acts caused for those individuals. Yet, this legislation raises serious puzzles. For example, in the U.S., cognitively impaired individuals are routinely convicted for sexual assault with non-cognitively impaired minors. How should we think about the conviction of a cognitively impaired individual who has sex with an underage, non-cognitively impaired individual? Does this imply that cognitively impaired persons are capable of understanding the criminality of failing to obtain legal consent while being, nonetheless, incapable of giving such consent? Should the law address only those cases in which either both or neither of the individuals involved are cognitively impaired? If so, why? -/- In this paper, I claim that shifting the analysis to one based on harms (away from legal standards of consent) better captures our intuitions about sex acts involving cognitively impaired individuals. (Indeed, a review of case law reveals a focus within these cases on the harms experienced by the impaired individuals involved.) I close the paper by identifying the difficulties that plague any legislation concerning individuals with mental impairments. (shrink)

awls’ theory of justice is the subject of numerous criticisms due to the impossibility of adequately including people with mental disabilities, either as legislators or as beneficiaries of the principle of justice. Martha Nussbaum’s criticism is directed at the question of the legislative group and the possibility of including the interests of persons who, due to the criteria of rationality and reasonableness, are excluded from the process of forming fundamental principles of justice. In this paper, I recognize the problems that (...) Rawls’s theory faces in light of the above criticisms, and as a solution, I propose a constructive and positive interpretation of his theory of justice. Such an interpretation will allow us to expand the group of legislators through the inclusion of those individuals with mental impairments who, according to Nussbaum, are capable of participating in the selection of principles of justice. Furthermore, the offered interpretation will include people with the most severe forms of mental disorders within the scope of justice, through an extended list of reasons relevant to the justification of fundamental rights and principles of justice. (shrink)

The question of whether problems with the social determinants of health that might impact decision-making justify denying eligibility for assisted dying has recently come to the fore in debates about the legalisation of assisted dying. For example, it was central to critiques of the 2021 amendments made to Canada’s assisted dying law. The question of whether changes to a country’s assisted dying legislation lead to descents down slippery slopes has also come to the fore—as it does any time a jurisdiction (...) changes its laws. We explore these two questions through the lens of Canada’s experience both to inform Canada’s ongoing discussions and because other countries will confront the same questions if they contemplate changing their assisted dying law. Canada’s Medical Assistance in Dying law has evolved through a journey from the courts to Parliament, back to the courts, and then back to Parliament. Along this journey the eligibility criteria, the procedural safeguards, and the monitoring regime have changed. In this article, we focus on the eligibility criteria. First, we explain the evolution of the law and what the eligibility criteria were at the various stops along the way. We then explore the ethical justifications for Canada’s new criteria by looking at two elements of the often-corrosive debate. First, we ask whether problems with the social determinants of health that might impact decision-making justify denying eligibility for assisted dying of decisionally capable people with mental illnesses and people with disabilities as their sole underlying medical conditions. Second, we ask whether Canada’s journey supports slippery slope arguments against permitting assisted dying. All data relevant to the study are included in the article. (shrink)

In the paper, titled ‘Choosing death in unjust conditions: hope, autonomy and harm reduction,’ Wiebe and Mullin argue that people living in unjust social conditions are sufficiently autonomous to request medical assistance in dying (MAiD). The ethical issue is that some people may request MAiD primarily because of unjust social conditions, not their illness, disease, disability or decline in capability. It is easily agreed that people living in unjust social conditions can be autonomous. Nevertheless, Wiebe and Mullin fail to (...) appreciate that autonomy is only a necessary condition for MAiD. In addition to autonomy, one must decide that providing assisted dying to a patient because they are living in unjust social conditions is ethical. Central to making this ethical decision is the principle of non-maleficence, famously articulated as ‘do no harm.’ The authors admit that performing MAiD in response to unjust social circumstances is harmful, but they justify this harmful action by appealing to the principle of harm reduction. A fundamental flaw of their approach is that it relies on the legislative definition of intolerable suffering, which is based on circular reasoning and given that 99.2% of patients that have applied for MAiD satisfied this criterion, it is essentially equivalent to no standard/criterion. Canadian society is struggling with the ethical implications of its permissive MAiD programme, and, fundamental to this debate, will be determining the proper balance between autonomy and non-maleficence for people living in unjust social conditions. (shrink)

Train crashes cause, on average, a handful of deaths each year in the UK. Technologies exist that would save the lives of some of those who die. Yet these technical innovations would cost hundreds of millions of pounds. Should we spend the money? How can we decide how to trade off life against financial cost? Such dilemmas make public policy is a battlefield of values, yet all too often we let technical experts decide the issues for us. Can philosophy help (...) us make better decisions? Ethics and Public Policy: A Philosophical Inquiry is the first book to subject important and controversial areas of public policy to philosophical scrutiny. Jonathan Wolff, a renowned philosopher and veteran of many public committees, such as the Gambling Review Body, introduces and assesses core problems and controversies in public policy from a philosophical standpoint. Each chapter is centred on an important area of public policy where there is considerable moral and political disagreement. Topics discussed include: Can we defend inflicting suffering on animals in scientific experiments for human benefit? What limits to gambling can be achieved through legislation? What assumptions underlie drug policy? Can we justify punishing those who engage in actions that harm only themselves? What is so bad about crime? What is the point of punishment? Other chapters discuss health care, disability, safety and the free market. Throughout the book, fundamental questions for both philosopher and policy maker recur: what are the best methods for connecting philosophy and public policy? Should thinking about public policy be guided by an ‘an ideal world’ or the world we live in now? If there are ‘knock down’ arguments in philosophy why are there none in public policy? Each chapter concludes with ‘Lessons for Philosophy’ making this book not only an ideal introduction for those coming to philosophy, ethics or public policy for the first time, but also a vital resource for anyone grappling with the moral complexity underlying policy debates. (shrink)

The British Medical Association has published a new report on health and human rights in immigration detention in the UK. Locked up, locked out outlines how aspects of current detention policies and practices are detrimental to the health of those detained and the challenges doctors face in providing healthcare in the immigration detention setting. It makes a number of recommendations aimed at addressing policy and practice which impact on health and well-being, including calling for an end to the routine use (...) of detention as a means of monitoring those facing removal from the UK and for the introduction of a time limit on the length of time individuals can be detained. It also provides guidance for doctors working in these settings on some of the common ethical and professional dilemmas they may face. The report can be accessed and downloaded at www.bma.org.uk/immigrationdetention. The Government has announced its intention to review mental health legislation for England and, in relation to non-devolved issues, for Wales.1 The Government states that it is ‘committed to delivering parity of esteem between mental and physical health’, although it does not clarify the meaning of ‘parity of esteem’. Similarly, the Government states that it wants to ensure that people with mental health problems ‘are treated with dignity, and that their liberty and autonomy is respected as far as possible’. Again, the Government has not indicated the meaning of ‘as far as possible’. Although not directly mentioned in the review’s terms of reference, it must be set against the background of changing legal and ethical expectations in relation to the rights of those with mental or cognitive disorders and disabilities. The UK is a signatory to the United Nations Convention on the Rights of People with …. (shrink)

The organ donor shortfall in the UK has prompted calls to introduce legislation to allow for presumed consent: if there is no explicit objection to donation of an organ, consent should be presumed. The current debate has not taken in account accepted meanings of presumption in law and science and the consequences for rights of ownership that would arise should presumed consent become law. In addition, arguments revolve around the rights of the competent autonomous adult but do not always consider (...) the more serious implications for children or the disabled. (shrink)

Harvey and Gurvir’s Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing.