Galasso (2024) shares findings from narrative analyses of relevant constituting material of and interviews with leaders in two national precision medicine research (PMR) programs: 100KGP of Genomic...

Volume 20, Issue 7, July 2020, Page 187-190.

Advances in technology, research development, and teaching practices have brought improvements in the training, levels of autonomy, and quality of life of people who need support and resources appropriate to their circumstances of disability. This article focuses on empirically analyzing the usefulness of treatments that have been supported by technology to answer the question “How do technological ecosystems being used help people with special educational needs?” The multiple case study methodology was used to address six categories of (...) analysis: project data, objectives, processes, outputs and outcomes, technologies, and impact. The processes, open in communication, were characterized as transversal, ethical, and sustainable. The results yielded various technological ecosystems that support people with disabilities, deliver the help they need to improve their health, and provide enjoyable user experiences. At the same time, they promote the training and improvement of teaching methodologies and involve families in order to improve their knowledge, attitudes, and care of children, young people, and adults with functional diversity. (shrink)

This paper is an attempt to advances research on walking, at a neighbourhood level of analysis for people with disabilities, by proposing a theoretical model that combines the knowledge of two disciplines: traffic planning and environmental psychology. The aim is to provide a guidance for a discussion and a planning of future interdisciplinary investigations, by proposing a model that accounts for the dynamic interaction between environmental characteristics, human processes, and walking experience among individuals with a disability. For (...) this purpose, traffic planners and environmental psychologists came together to discuss theories, concepts, and thematic of relevance in a series of focus group meetings. These meetings led to the selection of the Human Environment Interaction (HEI) model, originally developed from the field of environmental psychology, and operationalised to describe how walking experiences result from the interplay between individual abilities, emotional processes and physical and social characteristics of the environment (Küller, 1991). The proposed model aims to sustain interdisciplinary discussion and research planning around the topic of neighbourhood walking for people with disabilities. By operationalising each dimension in the model, a good fit between groups with disabilities and individual differences associated with walking experiences is assumed, which in turn will have the potential to provide a more conscious analysis of wellbeing-related outcomes such as, usability of the environment, frequency of mobility, and quality of life. However, to improve understanding of urban walking at a neighbourhood level for people with disabilities, empirical studies must be carried out to test the proposed model. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and (...) social service professionals, are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

A. Klimczuk, Book review: A. Rimmerman, "Social Inclusion of People with Disabilities: National and International Perspectives", New York: Cambridge University Press, 2013, "Human Rights Review" Vol. 16, Iss. 4 2015, pp. 397-399.

Shaming is defended by some as a necessary measure of social control. But shaming is unjust to the extent that it is disproportionate, and largely counterproductive. While much progress has been made, people with disabilities are still frequently at the receiving end of shaming. This is manifest in disregard for accommodation requests, condescending attitudes and overall lack of empathy towards people with disabilities. These trends are also manifest in clinical settings. Medical staff and healthcare workers need (...) to seriously consider this state of affairs and embrace attitudinal changes and policies that contribute to a more welcoming atmosphere towards the disabled, and consequently curb the shaming to which they have been traditionally exposed. (shrink)

This paper investigates one aspect of corporate social responsibility, incorporating diversity, especially the employment of people with disabilities in Japan. Where literature on incorporating diversity through the inclusion of minorities in Japan is concerned, a reasonable number exists that focus on gender and women managers. In contrast, very scant literature (in English) exists on the employment of people with disabilities in Japan. This paper will try to fill the gap.

Entrepreneurship has undoubted social value as it contributes to socio-economic development of the context where entrepreneurship takes place. When the entrepreneurial activity is undertaken among especially vulnerable groups in the labor market, the multiplying effect of this value is made explicit in society, in general, and in the collective of people with disabilities, in particular. The objective of this research study is to explore under which conditions this happens through the analysis not only of the relationship between the (...) competencies that PWDs attribute to themselves and their development of the entrepreneurial activity but also of that between entrepreneurship and certain conditions that potentially create value by increasing the autonomy among this collective. A quantitative methodology based on the analysis of the survey carried out on a sample of 224 entrepreneurs with physical, sensory, or organic disabilities throughout Spain has been used. According to the results, entrepreneurs with disabilities have a higher self-evaluation competency. Furthermore, significant results concerning the link between the form of autonomous cohabitation of this collective and entrepreneurship have been obtained. (shrink)

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical (...) and intellectual impairments, for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided. (shrink)

To some students with disabilities who take philosophy classes, and even to some professors with disabilities who teach philosophy, the discipline is not welcoming. Philosophical theory traditionally recognizes so-called normal people and common modes of functioning but seems to ignore or disparage biologically anomalous individuals. The adequacy of our epistemological and ethical philosophies is a pressing reason for us to acknowledge disability in philosophical theorizing. And there are equally pressing reasons to acknowledge that students with various (...) kinds of disabilities are members of our classes. In this special issue of Teaching Philosophy the authors reflect on how disability is engaged with in their philosophy classrooms for and by their students, and in the philosophy they teach. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and (...) social service professionals, are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

This article focuses on the Chinese traditional culture, specifically Confucian philosophy, and analyses four core concepts of Confucianism which include ‘ren’, ‘Jun zi’, ‘Tian ming’, and ‘Xiao ti’. Based on these core concepts, this study explores how social attitudes in China toward people with disabilities are formed and influenced by Confucian philosophy, and how they impact the education of people with disabilities. It suggests that the related social attitudes of sympathy, rights awareness, and criteria of success, (...) especially school performance in this case, can have both positive and negative impacts on inclusive education for children with disabilities. Strategies are suggested for encouraging attitude change, when appropriate, in order to facilitate special education and inclusion and how to do so in a manner that is culturally respectful of the core belie... (shrink)

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the QALY trap and (...) argues that all are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination. (shrink)

ABSTRACT Amartya Sen’s capability approach is often used in disability research as a normative framework for describing and evaluating the well-being of people with disabilities. Nevertheless, recently, the possibility of going beyond description to the use of the capability approach as an explanatory tool has been raised. However, to allow the use of the capability approach in this way requires grounding it in an appropriate research paradigm. In this paper, critical realism is adopted for this purpose. It is (...) argued that critical realism can provide the ontology needed to justify finding explanations for the way that people with disabilities achieve their valued capabilities. The assumption here is that there are real, emergent structures and mechanisms that underlie empirical capabilities; and that these structures and mechanisms are related to people’s agency, as described by critical realism’s conception of the relationship between structure and agency. (shrink)

Theories of distributive justice are often criticised for either excluding people with disabilities from the domain of justice altogether, or casting them as deficient in personal attributes. I argue that the capabilities approach to justice is largely immune to these flaws. It has the conceptual resources to locate most of the causes of disadvantage in the interaction between a person and her environment and in doing so can characterise the disadvantages of disability in a way that avoids the (...) imputation of natural deficiency. However, I also argue that the capabilities approach cannot accommodate some of the stronger claims advanced by some disability scholars. No plausible capabilities approach can guarantee that social change will always be the just or fair remedy for disadvantage, and there is a small number of severe cases of disability where capability shortfalls will be attributed to the person’s ‘deficient’ physical and mental impairments. (shrink)

The aim of this study was to investigate the experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation. Qualitative interviews were performed with 26 persons and thereafter subjected to qualitative latent content analysis. The experiences of personal assistance were very much in accordance with the said principles, the most (...) important factor being that one is met with understanding. The participants described situations in which their integrity was violated in that they were not treated as competent adults. This indicates the importance of future efforts in nursing to support personal assistants with ethical knowledge and supervision so that they can empower people with disabilities and thereby enable them to maintain their self-esteem and dignity. (shrink)

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also (...) a power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (shrink)

People with disabilities are often denied equal access to organ transplantation despite long‐standing federal nondiscrimination mandates. Under the Americans with Disabilities Act and the Rehabilitation Act, people cannot be excluded from consideration for organ transplantation because of disability itself, or because of stereotypes or assumptions about the value or quality of life with a disability. Instead, decisions concerning whether an individual is a candidate for organ transplantation should be based on an individualized assessment of the (...) patient and on objective medical evidence. Recent legal developments underscore these basic guarantees and signal a new focus on the policies, practices, and attitudes that continue to compromise equal access to life‐saving organ transplants for people with disabilities. (shrink)

This paper focuses on one objection to the use of reproductive genetic technologies (RGTs): the argument known as the expressivist objection. According to this argument, the choice to use reproductive genetic technologies to prevent the birth of individuals with disabilities is an expression of disvalue for existing people with disability. Many have been persuaded by this impassioned perspective. This paper shows that this argument is misguided and so does not constitute a sound objection to the use of (...) RGTs to prevent disability in future children. It first identifies some responses to the objection that may be sound but not completely convincing to proponents of the expressivist position. It then describes a thought experiment designed to demonstrate more clearly that choosing to use RGTs to prevent disability in future children does not convey a negative message about people who have disabilities. After describing a decision that clearly does not send such a message, the paper walks through a series of cases and shows how, despite differences that might seem to be morally relevant, each is morally equivalent to the previous one with respect to the extent that it expresses disvalue for such individuals. (shrink)

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim (...) that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

The disability viewpoint is the fundamental for understanding social justice in a given population. Disability rights need to be obeyed in the inclusive preparedness and response to all the disasters or during the crisis period including COVID-19 pandemic. COVID-19 pandemic jeopardized the health and rehabilitation services globally. The impact is much more in low resource developing countries like Bangladesh. In general, people with disability (PWD) suffer from multiple medical and rehabilitation complications and they need frequent rehabilitation consultations or (...) hospital admissions in comparison to people without disability. As a developing country, Bangladesh has poor ratios of doctors, nurses and technologists of 1:0.4:0.24 (WHO: 1:3:5) to face the COVID-19 challenge. Rehabilitation services have been disrupted in almost two-thirds (63%) of countries of the world. Even though rehabilitation is the key to recovery following severe illness from COVID-19. There are many concerns and debates about the preparedness, response and mitigation the process of COVID-19 on the part of the national government. According to recent study reports, the lives of about 100% of PWD have been impacted by the COVID-19 pandemic. COVID-19 National Technical Advisory Committee is working for strategic planning, response and mitigation process but omission of a representative of PWD or a rehabilitation physician in the committee has created much dissatisfaction. The difficult COVID-19 testing process due to country wide shutdown of rehabilitation essential services and central pulling of rehabilitation physicians have side lined the PWD inclusiveness. It is expected that the rehabilitation preparedness, response and mitigation of the pandemic should be based on an ethics driven process. (shrink)

A feminist ethics that bases morality on dependence or vulnerability challenges the moral priority of uniform over disparate treatment. Persons with disabilities resist equality's homogenization of moral personhood. But displacing equality in favor of caring or trust reprises the repression of those already marginalized. The ethics of difference proves an ineffective remedy for the negative consequences attendant on how historically marginalized groups are different. An historicized conception of equality resolves the dilemma.

People with disabilities face inequalities in mental wellbeing, for which social exclusion is a contributing factor. Musical activities offer a promising but complex intervention, making impacts on a population with highly varied characteristics and needs challenging to capture. This paper reports on a mixed methods, person-centered study investigating a community music intervention for such a population. Three groups of adult service users with varied disabilities, took part in weekly music workshops in different locations. Music staff, housing (...) and resource center staff, as well as participants and members of their families, took part in semi-structured interviews. A quantitative measure administered by service staff was used to rate service users’ social development. Two lay researchers, both individuals with a disability contributed to all aspects of the study. Interviews were analyzed through thematic analysis. Improvements in individuals’ self-expression, confidence, mood, and social skills were consistent with previous findings. Differences in effect between centers included: Group 1, some of whom had previous experience of workshops, showed an improvement in musical skills; Group 2 showed a mixed response, some participated with enthusiasm but others chose art activities over music workshops; Group 3 had lasting positive impact, this group had very limited opportunities for music due to their rural location. Quantitative analysis showed significant increase over all groups in communication, interaction with others, and joint attention. The intervention was beneficial for participants in separate locations in similar ways, but also highlighted that context and prior experience mediated effects in distinct ways. The lay researchers enhanced the qualitative analysis by emphasizing the importance of recognizing participants’ self-expression in non-verbal modes of communication and the importance of having music staff with a disability to provide a positive role model. This paper proposes that mixed methods person-centered research is the most suitable approach to capture and understand the multiple and varied effects of this complex intervention for a diverse group of participants. (shrink)

The “expressivist objection” argues that prenatal screening leading to termination of embryos or fetuses with disabilities sends a harmful message to people with disabilities, such as the message that their lives are not worth living. I first argue that whether it sends such a message depends on how a reasonable person would see the motives behind the screening. I then argue that a reasonable person would see a harmful message, not when individuals terminate embryos, and not for (...) severe disabilities, but when the state allows the screening and termination of embryos with less severe conditions, such as Down syndrome. This sends the message that it is permissible not to pay a higher cost to support people with disabilities, when there is an abled alternative. This attitude is harmful to the welfare, rights and self-worth of people with disabilities because it reinforces the refusal to provide them with equal opportunity. The state therefore has a strong pro tanto reason to ban prenatal screening for less severe disabilities. (shrink)

BackgroundAs Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and implementation (...) of this qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources.Main bodyOur field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management.ConclusionsConducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies. (shrink)

People with mild to moderate intellectual or multiple disabilities may have serious difficulties in accessing leisure events, managing communication exchanges with distant partners, and performing functional daily activities. Recently, efforts were made to develop and assess technology-aided programs aimed at supporting people in all three areas. This study assessed a new technology-aided program aimed at helping four participants with intellectual and multiple disabilities in the aforementioned areas. The program, which was implemented following a non-concurrent multiple (...) baseline across participants design, relied on the use of a smartphone or tablet connected via Bluetooth to a two-switch device. This device served to select leisure and communication events and to control the smartphone or tablet’s delivery of step instructions for the activities scheduled. Data showed that during the baseline phase, three participants failed in each of the areas while one participant managed to access a few leisure events. During the intervention phase, all participants managed to independently access leisure events, make telephone calls, and carry out activities. These results suggest that the program might be a useful tool for helping people with intellectual and multiple disabilities improve their condition in basic areas of daily life. (shrink)

People with cognitive disabilities and their advocates often express uneasiness about prenatal testing and the selective termination of pregnancies because the fetus has a cognitively disabling condition. There are high rates of abortion in such circumstances, and new forms of noninvasive prenatal testing (NIPT) have been introduced to improve the detection of genetic conditions. This chapter argues that the feeling of disquiet about prenatal testing and selective termination is justified. Philosophers working in the field of bioethics often offer (...) reassurance that such feelings are unjustified. This chapter shows that such reassurances fail and presents an argument that bias against people with cognitive disability plays a role in prenatal decision-making. Feelings of disquiet are justified because it is justified to object to bias that is otherwise directed at oneself. (shrink)

It is commonly held that there are both cases in which there is a strong moral reason not to cause the existence of a disabled person and cases in which, although it would be permissible to cause a disabled person to exist, it would be better not to. Yet many disabled people are affronted by the idea that it is sometimes better to prevent people like themselves from existing, precisely because these people would be disabled. One of (...) their grounds for concern, which will be my particular focus in this paper, is that claiming that there are reasons to prevent the existence of disabled people may be expressive of a demeaning and hurtful view of the status of existing disabled people, a view that may encourage discriminatory attitudes towards and treatment of the disabled. I will contend that there can indeed be moral and prudential reasons for preventing the existence of a disabled person. But I will argue that it is less obvious than many people assume what, if anything, the recognition of these reasons expresses about disabled people. And I will contend that, even if the recognition of these reasons does express a perception of disabled people that is potentially hurtful, this effect could be offset by the social expression of a contrary view that I will claim is in fact compatible with and equally valid as the potentially hurtful view. Whether it may be morally objectionable to cause a disabled person to exist depends, in part, on whether the person’s life would be worth living. If it is ever objectionable to cause a disabled person to exist, the objections are surely strongest when the person’s life would be “worth not living” – that is, would have aspects or features that would be bad for the person and that would decisively outweigh those, if any, that would be good. Such cases are, however, quite rare. Indeed, some people question whether there are any disabilities so severe as to cause life to be worth not living. It can be argued that disability involves only the absence of certain abilities and that mere deficits.... (shrink)

With an eye ultimately to answering the question of how business can alleviate poverty completely, the paper examines existing arguments about the approach of business to poverty reduction with the case of people with disabilities living in poverty in Vietnam. The paper suggests that business should take the knowledge and potential of poor people into consideration in its interfaces with different types of poor people: consumers, workers, property owners, etc. Furthermore, investigating how business (...) can help reduce poverty while still earning a profit and ensuring customer satisfaction limits research on business approach to poverty, since it assumes that business will have some “not-for-profit” purposes. The findings point out that businesses with “not-for-profit” purposes serve as a promising area for further exploration and research of business approach to poverty alleviation. (shrink)

RESUMO Este artigo analisa a atuação das forças centrípetas e centrífugas em enunciados da esfera religiosa que evidenciam cosmovisões do segmento cristão evangélico acerca da deficiência. Para tanto, selecionamos um vídeo disponível na plataforma YouTube contendo enunciados dos apresentadores Tito Rocha e Leandro Quadros relativos à temática da deficiência, bem como a resposta de uma internauta acerca do posicionamento desses sujeitos. A reflexão teórico-metodológica fundamenta-se na orientação dialógica da linguagem, sobretudo nas considerações acerca das relações dialógicas, vozes e forças centrípetas (...) e centrífugas. Também recorremos a estudos sobre cosmovisão, inclusão da pessoa com deficiência, discurso religioso e teologia cristã. Os resultados indicam que os discursos dos apresentadores refletem e refratam uma cosmovisão cristã que unifica o entendimento da deficiência como resultado da condenação divina ocasionada pelo pecado. O comentário da internauta, por sua vez, apresenta movimentos de centralização e dispersão dessa perspectiva cristã. (shrink)

This article focuses on the anxiety about whether God loves one or not. In the author's nearly 30-year ministry, this pastoral difficulty continues to perplex and afflict. While the presenting problem is what in theological parlance is 'a lack of assurance', a side difficulty is the poor and incorrect doctrine of God often associated with this. A Baylor University Study in 2006 characterises the kind of God that different groups of Americans believe in. While the phrase 'a lack of (...) assurance' is a part of dogmatic parlance, and has fallen out of use, the feeling of not belonging to God can be overwhelming for people. This feeling may be overwhelming. This makes it a pastoral issue. This article suggests a pastoral response to this issue and a proposal for a clarification in the nature and character of God using the therapeutic theology of 19th-century Scottish minister-theologian John McLeod Campbell. (shrink)

Should people with exceptionally profound disabilities be given an equal chance of surviving a pandemic, even when their care might require a greater use of limited medical resources? How might an ethics of care be used to shape a policy regarding these patients?

On July 2021, the UK High Court of Justice heard the Case CO/2066/2020 on the application of Heidi Crowter who lives with Down’s syndrome, and Máire Lea-Wilson whose son Aidan has Down’s syndrome. Crowter and Lea-Wilson, with the support of the disability rights campaign, ‘Don’t Screen Us Out’, have been taking legal action against the Secretary of State for Health and Social Care (the UK Government) for a review of the 1967 Abortion Act: the removal of section 1(1)(d) (...) making termination of pregnancy lawful for ‘severe’ fetal indications detected after 24 weeks' gestation. On 23 September 2021, the High Court dismissed the claim. This action came at a time when non-invasive prenatal testing (NIPT) was introduced into the NHS England Fetal Anomaly Screening Programme for the trisomies 21, 13 and 18. The implementation of NIPT has been heavily criticised, in particular by ‘Don’t Screen Us Out’ campaigners, for increasing fetal selection and discrimination of people living with disabilities. The case of Crowter and Lea-Wilson echoes debates in other European countries such as in France and Germany, where the introduction of NIPT in the public healthcare system has provoked equally vehement public reactions and discussions. The comparison between these three countries allows contextualising the public discourses around NIPT and the ground for termination of pregnancy in relation to different socio-cultural and political contexts. We examine how each country, and particularly England, deals with the conflict between the principles of promoting the rights of people living with disabilities and preserving women’s reproductive autonomy. (shrink)

In the virtual world, people can reconstruct their identity the way they want with avatars. Many expect the high degree of freedom in avatar customization will give new chances to socially marginalized people experiencing discrimination against their physical traits. Accordingly, research on a virtual embodiment of marginalized people has been steady with increased interest in equity and inclusion. However, even discourse alienates people with disabilities. In addition, there are few studies on the virtual (...) representations of people with disabilities. Therefore, this paper explores the shared perception of avatar-based disability representations among people with disability to help understand how they want to construct their disability with avatars. The study also gives direction for a barrier-free virtual world. We conducted semi-structured in-depth interviews with people with physical impairments who used virtual world services and performed a core-periphery analysis of social representations. This study expands the range of academic adoption of the social representations theory and provides insights for stakeholders such as service providers to design an inclusive virtual world. (shrink)

Cost effectiveness analysis is a tool for evaluating the aggregate benefits of medical treatments, health care services, and public health programs. Its opponents often claim that its use leads to unfair discrimination against people with disabilities. My aim in this paper is to clarify the conditions under which this might be so. I present some ways in which the use of cost effectiveness analysis can lead to discrimination and suggest why these forms of discrimination may be unfair. I (...) also discuss some proposals for avoiding discrimination without rejecting cost effectiveness analysis altogether. I argue that none of these proposals is ultimately convincing. I describe a different approach to the problem and conclude by answering the question in the title. (shrink)

Since at least the advent of Jack Kevorkian’s “suicide machine” the major argument against adopting physician-assisted suicide laws has been that they will lead us down a slippery slope to state-sa...

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also (...) a power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (shrink)

Law 49/2018, of August 14, created the Portuguese legal regime of the assisted decision-making (capacity), thus eliminating the legal institutes of interdiction and disqualification, provided for in the Civil Code (CC). The aim of this legal regime was to embed a new vision of disability based on a model of rights, that grants people with disabilities an independent and autonomous life and reflects the acceptance of the International Convention on the Rights of Persons with Disabilities (CRPD) guidelines. (...) This paper intends to discuss the ‘new’ Portuguese legal system regarding the legal capacity of persons with disabilities and its role in valuing the expression of the real will of people with disabilities. (shrink)

Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This ethical framework is derived (...) from the basic ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address (...) this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)