An area agency on aging (AAA) is a public or private nonprofit organization designated by the state to address the needs and concerns of all older persons at the regional and local levels in the United States (Administration for Community Living (ACL) 2019). AAAs have a successful history of developing, coordinating, and implementing comprehensive networks of services and programs that enrich communities and the lives of older adults. AAAs were established through a provision of the Older Americans (...) Act (OAA 1965), which was signed into law by President Lyndon B. Johnson. Specifically, AAAs were created with the 1973 reauthorization of the OAA. AAAs create the infrastructure to execute comprehensive long-term support services that ensure the independence of older adults. (shrink)

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)

An area agency on aging is a public or private nonprofit organization designated by the state to address the needs and concerns of all older persons at the regional and local levels in the United States 2019). AAAs have a successful history of developing, coordinating, and implementing comprehensive networks of services and programs that enrich communities and the lives of older adults. AAAs were established through a provision of the Older Americans Act, which was signed into law (...) by President Lyndon B. Johnson. Specifically, AAAs were created with the 1973 reauthorization of the OAA. AAAs create the infrastructure to execute comprehensive long-term support services that ensure the independence of older adults. (shrink)

The increased recognition and reported prevalence of autism spectrum disorders combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes (...) for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on “top-down” imposition of professional expertise, but rather on a “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD. (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)

Events such as industrialization, population growth and old age have made the disability more visible. We think that the disabled people's attitude towards being disabled and religion is an important issue to be investigated in terms of formation of the social sensitivity about the learning of the thoughts of disabled people. In this context, it is aimed to investigate the function of the religion in terms of how the disabled identify, understand and overcome the problems related to being (...) disabled. The sample of the study consisted of 58 people, 20 (34.5%) female and 38 (65.5%) male. Semi-structured interview technique was used as the research qualitative research method and descriptive analysis technique was used in the analysis of the data. In the article, the relation between disability and religion has been tried to be understood in terms of sociology of religion in the context of functionalist approach. In general, disabled people evaluate disability (81.1%) as "examination", (10.3%) as "problem" and (8.6%) as "difference”. It is concluded that religion affects the thoughts of disabled person in a positive way to understand and accept the disability. It has been seen that the disabled people have applied to the state, social support systems and spiritual values ​​to overcome their problems. However, it is the duty of all social institutions to increase the social sensitivity to the disabled people.Summary: Events such as industrialization, population growth and old age have further increased disability. It is important that the social sensitivity towards disabled people and disabled people’s thoughts about disability should be learned. We think that the disabled people's attitude towards being disabled and towards religion is an important issue to be investigated. In this study, the functions of religion to overcome the problems related to the disability and the way how the disabled people define and understand the disability will be investigated. In this context, we think that an individual's overcoming the problems related to disability is an important issue that should be examined in terms of religion-referenced behavior.The sample of the study consisted of 58 people, 20 (34.5 %) female and 38 (65.5 %) male. Semi-structured interview technique was used as the research qualitative research method and descriptive analysis technique was used in the analysis of the data. In the article, the relation between disability and religion has been tried to be perceived in terms of sociology of religion in the context of functionalist approach.It is a fact that various approaches to disability in various societies have been made during the historical process. These approaches are known as moral, medicinal/medical, social, human rights and limitative models. Each of these approaches points to a specific direction and problems of disability. In other words, each model handles and predicts a different dimension of the subject.According to the Qur’ân, disability means not to be in a bodily sense, but to stay away from the truth and expressed in the way of not seeing the truth, not grasping and not hearing, that is, figuratively meaningful. Again from the point of view of the Qur’ân, the first cause of disability comes to people through the divine will and test. The others are due to people's own mistakes.The changing paradigm shift with the enlightenment process has changed the way people view each other. In this context, with the thought and modernization of enlightenment, people's view of human beings and environment has changed. The body which is thought as the trust of God has turned into a body in which one is his proprietor. Therefore, this situation brought the contest, the debate, the comparison and the alienation together.Today, people with disabilities face many financial, spiritual, social and cultural problems. Poverty arising from unemployment, livelihood, accommodation constitute financial problems that are the first to come to mind; access to places of worship, instruction of worship, fulfillment of worship, lack of spiritual care and support constitute spiritual problems; education, health, access and social exclusion constitute social and cultural problems.Disabled people ask themselves these questions related to disability: Why did it happen to me? If it is a test, why do not I start the test on equal conditions with healthy people? Here the disabled person consults the religion to understand and find an answer to the situation that he is in. Because religion is an important factor that responds to the search for meaning, it reduces the feeling of deprivation, and fulfills the task of compensation mechanism. In addition to this, religion gives life a goal and power to the person to overcome the problems he encounters with.In our research on the relationship between disability and religion, religion as in many subjects has contributed positively to the individual’s view towards the fact of disability and to overcome some problems. For example, as a result of the research, the participants evaluated "disability" (81.1 %) as ‘test’ (10.3%) as ‘problem’ and (8.6 %) as ‘difference’.They answered the question ‘How has the disability affected your religious thoughts?’, 71% of the participants expressed that it has affected in a positive way (as a test, made me closer to God, increased my loyalty to God, a motivation source). Besides, 23 % of the participants expressed that it hasn't caused any changes (already believed, fate, disability isn't an obstruct to worship) and 6 % of the participants expressed that it has affected in a negative way (my life is upside down, I am questioning this situation).In addition to those who answered the question ‘Has the disability affected your life?’ in a ‘positive’ way, there is a considerable amount of people who said that the entrances of the mosques are not suitable for the disabled people. In addition, the disabled people stated that they have problems with the way of worshipping (orthopedically disabled), listening to the Qur’ân, hearing the azan (hearing impaired), and cannot go to the mosques and cannot fast because of the health problems, all of which have affected their religious life in a ‘negative’ way. We can gather the answers given to the question in three categories about what kind of behaviors the disabled people do to overcome/eliminate problems. The first is that they receive a variety of services and assistance by applying to the state for material support in order to overcome the problems related to disability and the second is that the social support services are mainly given within the family and friends, and the third is they worship, pray and fast, which are must of Islam, to eliminate the spiritual distress.The rate of people, whose answers are ‘positive’ to this question ‘Does your religious belief have an effect to deal with the disability?’ because they believe the afterlife and who say they feel relieved by praying and worshipping, is very high (95%). Moreover, it is remarkable that the ones say they are ‘not positive’ still explain this with religious concepts such as test and examination which require patience. In short, religion relieves disabled people by fulfilling the task of compensation mechanism with understanding disability and overcoming problems.Almost half of the participants (45%) said no to the following question: Is there any kind of material/spiritual support given to you by the religious officials or religious people in your community? Some factors affecting this situation are that religious officials have no knowledge and education about how to treat disabled people and how to help them.As a result, disabled people face various financial and spiritual problems. They consult religion to solve some of these problems. The vast majority of the disabled consider disability as a test and a fate. Therefore, religion plays an important role for disabled people to understand disability and cope with it. Besides, disabled people have stated that they face various problems in fulfilling their worship and in accessing the places of worship. In this context, physically disabled people also need the supportive power of religion just like other disabled people. (shrink)

Fetal alcohol spectrum disorders is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of (...) discussions with experts in the field, published literature, and medical ethicists. Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the social services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. The value for the concerned individuals of obtaining a FASD-related description of their condition – for instance, in terms of wellbeing – is not established. Nor is it established that allocating resources based on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs. (shrink)

Background Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT.Methods A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces.Results 882 pregnant women and 395 partners completed the survey. (...) 64% of women anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome.Conclusions Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation. (shrink)

The authors of these papers vary in age, nationality and professional background. They share a belief that all too often older people are not treated justly or fairly, and also a belief that this is particularly true with regard to a proper respect for their dignity as people and a proper allocation of medical and social resources. Their papers, in various ways, give evidence as to what is happening and arguments, based on philosophical (...) ethics, as to why it is wrong. The authors also have a range of proposals, backed by argument and evidence, and drawing on factual material as well as philosophical argument, as to what could be done to improve the situation. This is a book for anyone, whether themselves elderly, looking after an older person, professionally involved in working with older people, or simply realising that one day they will be old, who wants to learn about what is wrong with the present situation and how it might be made better. (shrink)

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)

The precarious rights of senior citizens, especially those who are highly educated and who are expected to counsel and guide the younger generations, has stimulated the creation internationally of advocacy associations and opinion leader groups. The strength of these groups, however, varies from country to country. In some countries, they are supported and are the focus of intense interest; in others, they are practically ignored. For this is reason we believe that the creation of a network of all these associations (...) is essential. The proposed network would act as a support for the already-existing policies of the United Nations’ High Commission for Human Rights, of independent experts, and of the Global Alliance for the Rights of Older People. All three have long ago recommended the creation of a recognized instrument for uniting presently scattered efforts. The proposed network, therefore, will seek to promote the international exchange of relevant expertise, and it will reinforce the commitments and actions that single countries are currently taking to meet these objectives. For example, informative public events can be organised to promote particular support initiatives and to provide an opportunity for new members of the network to be presented. The network will promote health for senior citizens, disease prevention, senior mobility, safe free time for seniors, alimentary education, protection against new risks and dangers, as well as equity in the services necessary for seniors to adopt new information and communication technologies. In the case of retired academic members, the network will promote equality with respect to continuing use of digital technologies (particularly email), continuing access to research libraries, and the guaranteed ability for seniors to fund their own research programs and to deliver free seminars. (shrink)

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), (...) we analysed how their expression of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a (...) 6-week group TSW program. Dyads participated in homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

With the development of rationalism, although the concept of filial piety is still an important factor affecting family relations, its rules have changed. Based on the resource theory and by measuring family power via the role played in family decision-making, this study explored the mediating role of filial piety norms between elderly’s family resource contributions and family power in intergenerational cohabitation families in Mengzhou city, China. Using a stratified sampling method, 1,200 elderly people were recruited for data (...) collection. Multiple linear regression analysis was used for testing. The results show that the elderly still have some FDM in Chinese intergenerational cohabitation families, and the family power of elderly men is still higher than that of elderly women, which indicate that the influence of traditional patriarchal norms still exists in the family. Filial piety culture mediates between the elderly’s relative economic income and their family power and also mediates the relationship of the elderly’s relative educational level and their family power. It shows that the resources of the elderly relative to their children affect the filial piety of their adult children and then affect the FDM of the elderly. The study is theoretically and practically meaningful. (shrink)

In ‘Nothing to Be Ashamed of: Sex Robots for Older Adults with Disabilities,’1 I make the case that the unwanted absence of sex from a person’s life represents not just a loss of physical pleasure, but a loss of dignity. Since people aged 65 and over suffer disproportionately from disabilities that impair sexual functioning, I focus on this population. Drawing on an analysis of dignity developed at greater length elsewhere,2 I argue that sex robots can (...) help older adults with disabilities and that societies ought to take reasonable steps to make them available to this population. Unlike other assistive technologies, robots invite human-robot relationships and can form close connections with older adults.3 In response to the proposal, four commentators have introduced objections that I address below. Sorell4 argues that people who are young and able-bodied may wish for sex in their lives too and its absence may be a bigger concern for them than for older people. In reply, while my focus is older adults with disabilities that impair sexual function, I also acknowledge that loss of sexual function can occur at any age as …. (shrink)

This paper spotlights ways in which sexual capacities relate to central human capabilities, such as the ability to generate a personally meaningful story of one’s life; be physically, mentally and emotionally healthy; experience bodily integrity; affiliate and bond with others; feel and express a range of human emotions; and choose a plan of life. It sets forth a dignity-based argument for affording older people access to sex robots as part of reasonable efforts to support their central (...) human capabilities at a floor level. The argument develops stepwise: (1) first, I dispel ageism and negative stereotypes about later-life sexuality, showing their deep historical roots in medicine and science; (2) second, I set forth a positive argument, grounded in capability accounts of justice, for deploying sex robots for older people with disabilities; (3) finally, after responding to objections, I conclude that sex robots are a reasonable way to support later-life sexuality for persons with disabilities. While often depicted as a product for younger, able-bodied people, this paper is a bid for reimagining sex robots as a product for older, disabled people. (shrink)

This book serves as a tool to help patients and families deal rationally with the perplexing and often irrational world of healthcare. It covers the topics and addresses the challenges that experts in a variety of healthcare fields believe to be the most vital to meeting the challenges of decision-making when people feel most vulnerable. With contributions from leading healthcare specialists, Surviving Health Care: A Manual for Patients and their Families examines a wide array (...) of topics, including advance planning for healthcare, medical emergencies, genetic testing, pain management, and care of elders. It is a unique resource that aims above all to help patients reach their best healthcare decisions. (shrink)

Background:Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy.Objective:To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy.Setting:Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual (...) class='Hi'>disabilities.Methods:Ethnographic field study.Ethical considerations:The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee.Findings:Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.”Conclusion:Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach. (shrink)

This paper will explore the power of history in affecting contemporary caring practice. Drawing on the author's personal experience as a social worker, researcher and parent of a daughter with learning disabilities, the article will consider the ways in which the experience of (and to an extent, nostalgia for) the ?heady days? of de-institutionalisation continues to influence staff perceptions about their work. In doing so, this article will critique normative notions of choice and control that are at (...) the heart of current moves towards self-directed support and personalised services. The author contends that staff who support people who have learning disabilities need something with which to compare and validate their practice. In the 1980s the hospitals were easily identifiable as something negative with which practice ?in the community? could be compared. In the twenty-first century the need for a comparator is still there, but the hospitals and many of their associated structures such as Adult Training Centres have gone. The paper argues that the family can be a contemporary structure against which current practice can be measured. (shrink)

Social death is apparent when people are considered unworthy of social participation and deemed to be dead when they are alive. Some marginalized groups are more susceptible to this treatment than others, and one such group is people with dementia. Studies into discrimination towards older people are well documented and serve as a source of motivation of older people’s social movements worldwide. Concurrently, theories of ageing and care have been forthcoming in a bid (...) to improve the quality of responses to older people in times of need. Included in this theorizing has been the analysis of values and approaches that paid carers convey to citizens who require their help. In this article, the values and approaches of social workers and mental health nurses bring to people with dementia are considered within the context of social life and social death. It is based on a small study that undertook to critically examine how participation of people with dementia was facilitated. A thanatological lens was used to interpret inclusive and exclusive practices which potentially create opportunity for participation or reinforce the loss of citizenship for older people with dementia. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect (...) to decision-making and their views on supported decision-making. Thirty-six interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect (...) to decision-making and their views on supported decision-making. Thirty-six interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

Parenting a child with a disability presents unique challenges and requires additional care and attention. Parents play a crucial role in promoting their child’s development, fostering their independence, and nurturing their overall well-being. This research study aims to investigate the adequacy of resources and support available to families of children with disabilities, as well as the perception of parents regarding these aspects. A specially designed questionnaire consisting of 21 questions was used as (...) the research instrument, which was distributed to families through a Google form. The research sample was convenience-based and comprised 250 parents of children with disabilities. The findings of the study reveal widespread dissatisfaction among parents in relation to institutional support. The results indicate that a significant majority of parents (80%) do not receive adequate institutional support, while only 1% reported receiving it. Furthermore, not a single parent reported being satisfied with the coordination among medical, educational, and social institutions, with 56% expressing dissatisfaction and 44% indicating partial satisfaction. This study highlights the need for improved coordination among various institutions, increased parent education, and the provision of comprehensive support services to ensure a better quality of life for families of children with disabilities. (shrink)

This research aims to examine access to medical treatment during the COVID-19 pandemic for people living with disabilities. During the COVID-19 pandemic, the practical and ethical problems of allocating limited medical resources such as intensive care unit beds and ventilators became critical. Although different countries have proposed different guidelines to manage this emergency, these proposed criteria do not sufficiently consider people living with disabilities. People living with disabilities are therefore at (...) a higher risk of exclusion from medical treatments as physicians tend to assume they have poor quality of life, whereas access to medical treatment should be based on several parameters, including clinical data and prognosis. However, the COVID-19 pandemic shifts the medical paradigm from person-centred medicine to community-centred medicine, challenging the main ethical theories. We reviewed the main guidelines and recommendations for resources allocation and examined their position toward persons with disabilities. Based on our findings, we propose criteria for not discriminating against people with disabilities in allocating resources. The shift from person-centred to community-centred medicine offers opportunities but also risks sacrificing the most vulnerable people. The principle of reasonable accommodation must always be considered to guarantee the rights of persons with disabilities. (shrink)

What is it like to live with the label “Disability?” NIB editorial staff and narrative symposium editors, Jeffery Bishop and Naomi Sunderland developed a call for stories, which was sent to several list serves, shared with the 1000 Voices Project community and posted on Narrative Inquiry in Bioethics ’ website. The request for personal stories from people who identify with the label “disabled” asked them to: consider how the label “disability” interacts with other aspects of (...) their life in health care settings; does the term “disability” reflect their actual embodied experiences of impairment or does it fail to do justice to their particular experience of impairment; describe the kind of experiences that are possible because of the impairment(s); discuss how the label has affected their “authentic voice”; and many other concepts about what effects the label has on their lives. These authors share deeply personal experiences that will help readers understand their world, challenges, and joys. Thirteen stories are found in the print version of the journal and an additional five supplemental stories are published online only through Project MUSE. The stories are complemented by four commentary articles by Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. These scholars come from the disciplines of law, social work, media studies, medicine, and bioethics from Australia and the United States. Together, the symposium’s storytellers and commentators offer striking and informative insights into the everydayness of living with disabilities. (shrink)

Given that many people with disabilities have been excluded from political deliberation and subjected to infantilizing and degrading treatment from others, many members of the disability rights movement are understandably critical of policies and practices that speak on behalf of people with disabilities and presume to know what is really in their best interest. Yet, this analysis argues that a general principle of anti-paternalism is not desirable for disability politics. In particular, people (...) with cognitive disabilities are sometimes unable to make important decisions by themselves, and may require assistance from family members or more cognitively able and verbally fluent citizens to make their political voices and choices heard. Drawing from John Locke and Alasdair MacIntyre, this article reconsiders the relationship between paternalism and autonomy, suggesting that autonomous decisionmaking and expression are best thought of as collaborative processes undertaken between people with a range of capacities. (shrink)

Background Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people (...) class='Hi'>with dementia to research projects, to inform the future development of training resources. Methods A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents’ confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. Results 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling ‘very confident’ in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers’ confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. Conclusions Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person’s ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families. (shrink)

As a form of functional diversity, spinal cord injury expressed by tetraplegia is one of the most serious events that can impact people, affecting their family and socioeconomic life. The type of care relationship established in these cases will be essential for preserving autonomy. The objective of this study was to understand how care relationships influence the autonomy of people with tetraplegia and the dynamics that trigger practices of autonomy violation, maintenance and promotion. This research is (...) inspired by problematization as a methodology using the Arch of Maguerez as an analytical approach strategy that enables an engagement between empirical and theoretical data. Some models of care relationships identified in this study either promote or violate autonomy: the protectionist model, based on the biomedical interpretation model of disability and the bodily impediments caused by spinal cord injury; the participatory model, involving the patient's interest in adapting to their new condition of family and community life, seeking to understand the practical aspects of daily life; the sharing model, in which the complicity and understanding of new forms of bodily expression allow the caregiver to be almost an extension of the tetraplegic person's body; the delegate model, which occurs in relationships with professional caregivers; and the emancipatory model, which seeks to empower the patient, highlight potentialities, and encourage autonomy. The key components of these conceptual care models guided the elaboration of hypotheses for intervention with the objective of maintaining and promoting the autonomy of people with tetraplegia through supported care. (shrink)

The ageing populations of the Western world present a wide range of economic, social, and cultural implications, and given the challenges posed by deteriorating maintenance ratios, the scenario is somewhat worrying. In this paper, I investigate whether Martha C. Nussbaum's capabilities approach could secure dignity for older people in long‐term care, despite the per capita decreases in resources. My key research question asks, ‘What implications does Nussbaum's list of central human capabilities have for practical social care?’ My (...) methodology combines Nussbaum's list with ethnographic data gathered from a Finnish sheltered home for older people. On the basis of this study, it seems that the capabilities approach is a plausible framework for the ethics of care because it highlights differences in the ability to function and thus differences in opportunities to pursue a good life. The ideas presented in this article could assist social policy planners and executives in creating policies and practices that help old people to maintain their dignity until the end of their days. (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)

Arguments about the ownership of natural resources have focused on the claims of cosmopolitans, who urge an equality of global claims to resources, and resource sovereigntists, who argue that national peoples are the proper owners of their resources. This focus is mistaken: Whatever one believes about the in-principle claims of the global community, there remains the practical question of how the national surplus is to be distributed. And in addressing this question, we must look at a (...) distinction heretofore ignored in resource discussions—that between resident workers and citizens. I argue that the extracted value of natural resources should benefit all residents of the states in which they are found, not merely all citizens. By contrast, control of natural resources should be vested in a democratic citizenry, who are nonetheless normatively constrained by the distributive principle described above. I illustrate the argument with data showing the gap, especially in the Gulf States, between principles that allocate benefits to all citizens vs. to all resident workers. My argument is grounded in a broader theory of collective agency as it applies to questions of distributive justice, and it is aimed not only to criticize practices in the Gulf but to support the more inclusive resource policies found in democracies. (shrink)

This study examines public health nurses’ perceptions and concerns about the implications of Japan’s new long-term care insurance law concerning care provision for elderly people and their families. Respondents voiced their primary concern about this law as access to services for all elderly people needing care, and defined their major responsibility as strengthening health promotion and illness prevention programmes. Although wanting to expand their roles to meet the health care, social and public policy (...) advocacy needs of elderly persons and their families, respondents also stated their concern for the possible lack of enough resources for this expansion to support family caregivers adequately. They viewed their first function as developing collaborative relationships with local government officials to help to assure sufficient resources to provide the necessary foundation for long-term care programmes to deliver services to all those in need. These concerns fall within the larger ethical issue of distributive justice in a society based on the obligations of the state to citizens and the family to its members, especially elderly relatives, who, according to traditional Japanese values, retain respect. (shrink)

The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, (...) but this was higher when family members were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect. (shrink)

The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and (...) using one's temperament. These generated the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives. (shrink)

Conducting phenomenological research for dissertations can be an involved and challenging process, and writing it up is often the most challenging part. How to Write a Phenomenological Dissertation gives students practical, applied advice on how to structure and develop each chapter of the dissertation specifically for phenomenological research. Phenomenology is about personal experience and personal experience varies from researcher to researcher. However, this variation is a big source of confusion for new researchers in the social, behavioral, or health sciences. This (...) brief text is written in a simple, step-by-step fashion to account for this flexibility and variation while also providing structure necessary for a successful dissertation. Broken up into chapters that follow each chapter of the dissertation, this text logically addresses the various parts of phenomenological research, starting with ensuring phenomenology is the right method for your research, writing the literature review, going through methods and results sections to analysis and discussion. The author, using experience gleaned from supervising phenomenological dissertations for many years, gives time-tested advice on how structure the dissertation to fit into more common frameworks, using checklists and tables throughout. Each chapter includes a list of helpful resources for students to use alongside this book with specific information on methods and research. Unique to this text is a chapter on creating your own phenomenological method which allows students to expand their viewpoints and experiment in future studies after the dissertation. (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)

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)

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)

People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities in Wolaita Sodo town, Ethiopia. Both descriptive and explanatory study designs were used and quantitative (...) data were collected. A self-administered questionnaire was designed and distributed to randomly selected 403 (202 females & 201 males) unmarried youth. Data analysis was undertaken using SPSS software in which both descriptive and inferential statistical techniques were utilized for data presentation. The result showed that most (85.5%) of the young people without disabilities participated in the survey were not willing to have any type of personal relationships with persons with disabilities and the main reason for 44.2% of these respondents being the fear of reaction from family members. Furthermore, it was found that the level of willingness of youth without disabilities to engage in romantic love and marital relationships was not influenced by the socio-economic status of people with disabilities. Moreover, the result of binary logistic regression analysis showed that the willingness of respondents to have marital and romantic love relationship with persons with disabilities is significantly associated to the sex (OR = 2.376; P < 0.05; 95%CI = 1.210, 4.664), raised-up area (OR = 2.512; P < 0.01; 95%CI = 1.319, 4.783), age (OR = 2.886; P < 0.05; 95%CI = 1.012, 8.228) and the presence of person with disability in the family (OR = 3.945; P < 0.01; 95%CI = 1.648, 9.442) of respondents. The findings of the present research demonstrate that people with disabilities have continued to face stereotypes and discriminations. Such stereotypes extend to assuming them as asexual and unfit to carryout roles that arise from love or marital relationships which violates the rights of PWDs to form their own family and have children. It is therefore, important to raise the awareness of young people about the differences between disability and sexuality and that physical disability has nothing to do with sexuality and relationship formation. (shrink)

The COVID-19 pandemic has occasioned a great deal of ethical reflection both in general and on the issue of reverse triage; a practice that effectively reallocates resources from one patient to another on the basis of the latter having a more favourable clinical prognosis. This paper addresses a specific concern that has arisen in relation to such proposals: the potential reallocation of ventilators relied upon by disabled or chronically ill patients. This issue is examined via three morally parallel scenarios. (...) First, the standard reallocation of a ventilator in accordance with reverse triage protocols; second, the reallocation of a personal ventilator from a chronically ill patient ordinarily reliant on it; and, third, the reallocation of a personal ventilator owned by a financially privileged individual but who is not ordinarily reliant on it. This paper suggests that whilst property rights cannot resolve these scenarios in a satisfactory manner, it may be possible to do so if we draw on the resources of phenomenology. However, in contradistinction to a recent paper on this topic, we argue that ethical claims to ventilators are not well grounded by the overly demanding notion that they are embodied objects. We suggest that the alternative phenomenological notion of homelikeness provides for a more plausible resolution of the issue. The personal ventilators of individuals who commonly rely upon them become part of their ordinary, everyday or homelike being. They are a necessary part of the continuation or maintenance of their basic state of health or wellbeing and the reallocation of such objects is unethical. Keywords: Phenomenology, COVID-19, Pandemic, Triage, Reverse triage, Ventilation, Chronic illness, Allocation of resources. (shrink)

Personalisation is the new mantra in social care; this article focuses on how personalisation can be achieved in practice, by presenting an analysis of data from people with learning disabilities and their personal assistants, where traditional care relationships have often been shown to be disempowering. The focus here is on the ways in which both parties use references to shared knowledge, joint experiences or personal-life information. These strategies can be used for various social goals, and instances (...) are given where shared references are used during non task-related talk. Both parties are seen on occasion to attempt to refer to shared information, and dense layers of inference can result, which move the interaction onto an ordinary, more symmetrical and friendly footing. The article concludes that shared knowledge referencing creates a way to shift between the personal and the professional, to blur the boundaries, and to create a new and more personalised relationship. (shrink)

The care for older and disabled people has been described as a core area of the Nordic model. The Nordic countries’ welfare model has also been described as women friendly, as women are not forced to make harder choices than men between work and family. The Swedish eldercare system has, during the last several decades, undergone significant changes. Previously, eldercare could be described as universal, meaning a publicly provided, comprehensive, high-quality service available to all citizens according to need (...) and not based on the ability to pay. In later years transformation of eldercare has been influenced by neoliberal politics, which emphasize economic efficiency and cost reduction through competition. Eldercare has become a more diverse multidimensional system, and a private market for home-based eldercare has been created. The numbers of eldercare providers have increased considerably, and new ways of organizing eldercare have been established. In January 2009, the Act on System of Choice in the Public Sector was introduced. The Act was supposed to provide an opportunity for interested municipalities and county councils to expose their publicly provided services to market competition, and to enable users to choose their providers. This article aims to illustrate how neoliberal reasoning dominated the policy process leading to adoption of the Act on System of Choice in the Public Sector. With the use of a discursive policy analysis the authors specifically explore how neoliberal logic dominated, and also how choice and equality were understood and interpreted in the policy process. They conclude that the neoliberal turn in eldercare claiming to centre on the individual choice of persons in need of care runs the risk of creating unequal care that decentres the eldercare worker and creates precarious work situations. (shrink)

The number of people with dementia is increasing worldwide. At the same time, family and professional caregivers’ resources are limited. A promising approach to relieve these carers’ burden and assist people with dementia is assistive technology. In order to be useful and accepted, such technologies need to respect the values and needs of their intended users. We applied the value sensitive design approach to identify values and needs of patients with dementia and family (...) and professional caregivers in respect to assistive technologies to assist people with dementia in institutionalized care. Based on semi-structured interviews of residents/patients with cognitive impairment, relatives, and healthcare professionals (10 each), we identified 44 values summarized by 18 core values. From these values, we created a values’ network to demonstrate the interplay between the values. The core of this network was caring and empathy as most strongly interacting value. Furthermore, we found 36 needs for assistance belonging to the four action fields of activity, care, management/administration, and nursing. Based on these values and needs for assistance, we created possible use cases for assistive technologies in each of the identified four action fields. All these use cases already are technologically feasible today but are not currently being used in healthcare facilities. This underlines the need for development of value-based technologies to ensure not only technological feasibility but also acceptance and implementation of assistive technologies. Our results help balance conflicting values and provide concrete suggestions for how engineers and designers can incorporate values into assistive technologies. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and (...) informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (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 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)