Over the past 15 years income sources in the Amazonian community of Carvão have diversified to include government salaries, retirement and welfare benefits, and wages from an evolving informal service sector. These non-farm incomes are now more important to household incomes than the sale of agricultural products. Out of 80 households only three families were found to depend almost entirely on the sale of agricultural goods for cash income. Agriculture is still a part of most families’ livelihoods; however, production today (...) is mainly a subsistence activity. Recent changes in Carvão are consistent with trends of livelihood diversification observed in rural societies across the globe. However, current research reveals that Carvão is different from other case studies in a number of ways. A history of livelihoods illustrates that residents in Carvão have always engaged in a range of activities, including farming, extractive activities, and wage labor. New incomes are the result of new jobs in the public sector and social policies benefiting the rural poor. In contrast to the literature on livelihood diversification, the decentralization of the federal government in Brazil has resulted in greater opportunities for rural income and employment. Consistent with recorded trends, research shows that small farmers in Carvão have down-sized agricultural production. Farmers cite low market prices (the result of vertical integration of local markets) as one cause of this decline. Residents, especially small farmers, interested in diversifying agricultural production are limited by inadequate extension services and credit, and younger residents seek public sector employment. Income diversification has increased livelihoods security; however, future livelihoods will depend on new economic growth. Given the stagnating public sector and a weak industrial sector, production geared toward growing urban markets is a viable means for further income generation in Carvão. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...) particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

Vulnerability has been extensively discussed in medical research, but less so in health care. Thus, who the vulnerable in this domain are still remains an open question. One difficulty in their identification is due to the general criticism that vulnerability is not a property of only some, but rather of everyone. By presenting a philosophical analysis of the conditions of vulnerability ascription, we show that these seemingly irreconcilable understandings of vulnerability are not contradictory. Rather, they are interdependent: they refer to (...) the same concept with different likelihoods of manifestation. We argue that the general vulnerability of living beings relies on their having certain types of interests. In health care, those individuals are particularly vulnerable who are more likely to have these interests unjustly considered. They should be afforded special protection in order to receive what is due to everyone, but which they are likely to fail to receive. (shrink)

There is broad agreement that humans can be wronged independently of their incurring any harm, that is, when their welfare is not affected. Examples include unnoticed infringements of privacy, ridiculing unaware individuals, or disregarding individuals’ autonomous decision-making in their best interest. However, it is less clear whether the same is true of animals—that is, whether moral agents can wrong animals in situations that do not involve any harm to the animals concerned. In order to answer this question, I concentrate on (...) the illustrative case of treating animals in a demeaning yet harmless way that would be disrespectful if humans were concerned. I discuss whether such actions are permissible or unjustifiably discriminatory from a moral point of view. I conclude that moral agents cannot directly wrong animals without harming them and thus do not owe it to a particular animal to refrain from such actions. However, if the actions increase the likelihood that animal abuse will occur, this presents a strong indirect reason against performing them. Thus, the reasons for refraining from such actions are merely indirect rather than direct. (shrink)

Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector (...) health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data. (shrink)

There is an alleged tension between undue inducement and exploitation in research trials. This paper considers claims that increasing the benefits to research subjects enrolled in international, externally-sponsored clinical trials should be avoided on the grounds that it may result in the undue inducement of research subjects. This article contributes to the debate about exploitation versus undue inducement by introducing an analysis of the available empirical research into research participants' motivations and the influence of payments on research subjects' behaviour and (...) risk assessment. Admittedly, the available research in this field is limited, but the research that has been conducted suggests that financial rewards do not distort research subjects' behaviour or blind them to the risks involved with research. Therefore, I conclude that research sponsors should prioritise the prevention of exploitation in international research by providing greater benefits to research participants. (edited). (shrink)

In 2004 Emanuel et al. published an influential account of exploitation in international research, which has become known as the 'fair benefits account'. In this paper I argue that the thin definition of fairness presented by Emanuel et al, and subsequently endorsed by Gbadegesin and Wendler, does not provide a notion of fairness that is adequately robust to support a fair benefits account of exploitation. The authors present a procedural notion of fairness – the fair distribution of the benefits of (...) research is to be determined on a case-by-case basis by the parties involved in each study. The fairness of the distribution of benefits is not assessed against an independent normative standard. Emanuel et al.'s account of fairness provides a framework for objecting only to transactions that occur without the fully informed consent of the weaker party. As a result, a debate about exploitation collapses into a debate about consent. This is problematic because, as the proponents of the fair benefits framework acknowledge, neither the trial participants' consent nor the host community's consent preclude exploitation. Attempts to stipulate normative standards of fairness to protect research subjects in developing countries have been controversial and divisive, and it is therefore understandable that bioethicists would be tempted to develop accounts of exploitation that are independent of such prescriptive principles. I conclude, however, that the utility of the fair benefits model of exploitation as a policy tool will ultimately depend on whether a substantive principle of fairness can be developed to underpin it. (shrink)

One of the most exciting developments in philosophy in the last fifty years is the resurgence in the philosophy of action. The concept of action now occupies a central place in ethics, metaphysics and jurisprudence. This collection of original essays, by some of the most astute and influential philosophers working in this area, covers the entire range of the philosophy of action. Topics covered include the nature of actions themselves; how the concepts of act, agent, cause and event are related (...) to each other; self-knowledge, emotion, autonomy and freedom in human life; and the place of the concept of action in criminal law. The volume concludes with a major essay by one of America's leading authorities in the philosophy of law on 'the 3.5 billion dollar question': was the destruction of the World Trade Center one event or two? (shrink)

This book proposes a new interpretative key for reading and overcoming the binary of idealism and realism. It explores the way human consciousness unfolds through the relationship between the I and the world-a field of phenomenological investigation that cannot and must not remain closed within the limits of its own disciplinary boundaries. The book focuses on the question of realism in contemporary debates, ultimately dismantling prejudices and automatisms that one finds therein. It shows that at the root of the controversy (...) between realism and idealism there often lie equivocations of a semantic nature. By returning to the origins of modern phenomenology this study mines the Husserlian concept of transcendental idealism. Following this path, and neutralizing the extreme positions of an acritical idealism and a naïve realism, the book proposes a "transcendental realism": the horizon of a dynamic unity that embraces the process of cognition and that grounds the relation, and not the subordination, of subject and object. The close reading of this reciprocity offered here allows one to surpass the limits of the domain of knowing, leading one to fundamental questions about the ultimate sense of things and their origin. (shrink)

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data (...) for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Pragmatist Aesthetics and New Visions of the Contemporary Art Museum:The Tate Modern and the Baltic Centre for Contemporary ArtAngela Marsh (bio)John Dewey mandated the repositioning of our experience of art within the realm of the everyday, and recognized the importance of art objects principally with regard to how they operate within an experience as "carriers of meaning."1 In this quote from Art as Experience, Dewey illustrates the segue between (...) art and the perceiver, and his belief that within the profound art experience, lived dichotomies are healed:In art as an experience, actuality and possibility or ideality, the new and the old, objective material and personal response, the individual and the universal, surface and depth, sense and meaning, are integrated in an experience in which they are all transfigured from the significance that belongs to them when isolated in reflection.2Although the ephemeral nature of Dewey's definition of art-as-experience — hinged upon immediacy and the subjective heuristics of the perceiver — may seem difficult to capture and apply, the practicality of the concept, Richard Shusterman argues, lies in its "transformative potential," as a way to reconceive the place of art and its function in our world:Defining art as experience, I argue, also has value in widening the realmof art by challenging the rigid definition between art and action that is supported by definitions that define art as mimesis, poiesis, or the narrow practice as defined by the institutional art world. In other words, I argue that Dewey's definition of art as experience has a very fruitful transformational potential.3By defining art as experience, Dewey also sought to dissolve the binary structures of aesthetic rifts: art and life, high art and low art, body and mind, subject and object, self and world, emphasizing the holistic action in our engagement with art.4 But according to Dewey, the divisor of art from life and thus to blame for the aesthetic barrenness of our lived reality is the museum institution, as Shusterman describes: [End Page 91]The compartmentalization and spiritualization of art as an elevated "separate realm" set "upon a far-off pedestal," divorced from the materials and aims of other human effort, has removed art from the lives of most of us, and thus impoverished the aesthetic quality of our lives.(PA, 19)However, we must keep in mind that Art as Experience was published in 1934. Today, new approaches towards encounter and engagement within public museums are taking form and gaining momentum, with unprecedented directorial visions and mandates designed to nurture and make accessible art-based experiences among diverse audiences — where art and life can meet via multiple approaches. Theoretical synchronicities between pragmatist approaches to aesthetics and fruitful museum experiences can be suggested upon consideration of various innovative programs and approaches initiated at the Tate Modern in London and the Baltic Center for Contemporary Art in Gateshead. The overwhelming success of both venues could signify a reengagement of the general public with contemporary art, fed by "democratic," participatory approaches to exhibiting and programming art that make the museum more accessible to the various mixed publics it serves. In light of these new museological developments, Dewey's polemic oppositions between his conceptualizations of the museum experience and "art-as-experience" should be reexamined and possibly redefined.Dewey was entirely opposed to the concept of "art for art's sake." By exonerating art of any functional value — deeming it "fine" — art was elevated to a position separate from life, and thus rendered impotent to effect a lived aesthetic experience (which is how, Dewey would argue, the arts function most powerfully — as the purveyors of heightened experience). As Shusterman describes:The underlying motive for such attempts to purify art from any functionality was not to denigrate it as worthlessly useless, but to place its worth apart from and above the realm of instrumental value...and this freedom from use would be its defining and ennobling feature.(PA, 9)Dewey (and Shusterman) thus maintained that the very power construct that put the "fine" in art did so by removing the aspect of function from it. As previously stated, Dewey blamed museum institutions for removing art from its... (shrink)

A perspectiva de Jacques Rancière sobre o “momento qualquer” tem sido um dos conceitos mais frutíferos para compreender a elaboração contemporânea de cenas políticas de dissenso de um ponto de vista estético. Mas o que exatamente seria um “tempo qualquer”? Como se relaciona com a criação de narrativas políticas? Este texto descreve algumas relações entre tempo e comunicação a partir da visão de Rancière acerca das temporalidades intervalares que coexistem na construção de narrativas contra-hegemônicas sobre a existência de formas de (...) vida heterogêneas. Argumenta que (1) o conceito de "momento qualquer" se refere a uma categoria política, não apenas temporal; (2) a formação de cenas de dissenso está relacionada à definição dos significados de “tempos desmedidos” em cada ocasião, pois (3) opera na liminaridade dos tempos hegemônicos que enquadram a comunicação. (shrink)

RESUMO Neste artigo pretendemos refletir acerca da constituição do sujeito político a partir de dois conceitos específicos: rosto e cena de dissenso. Nosso argumento pretende evidenciar como, ao “aparecerem”, os indivíduos produzem uma cena polêmica de enunciação na qual se desencadeia um processo de subjetivação política e de criação de formas dissensuais de comunicação e performance que inventam modos de ser, ver e dizer, configurando outras interfaces entre experiência estética e política. Tal processo potencializa a invenção de novas visualidades e (...) interlocuções nas quais se inscreve o rosto, definido aqui como o vestígio de um lugar do outro que se transforma na promessa do meu próprio lugar, assumindo caráter político e comunicacional, num processo incessante de subjetivação política em que ética e estética se tangenciam. ABSTRACT The aim of this article is to ponder on the constitution of the political subject from two specific concepts: the face and the scene of dissensus, in order to show how the “appearance” of the individuals can produce a controversial scene of dissensus, trigger a process of political subjectivation and the creation of dissensual forms of expression and communication that invent new ways of being, seeing and saying, configuring new ways of collective enunciation and interconnections between aesthetic experience and politics. This is related to the invention of new visualities and interlocutions in which the face is inscribed. Face is defined here as the vestige of a place of the other that is transformed into the promise of my own place, assuming a political and communicational character, in an incessant process of political subjectivation where ethics and aesthetics are related. (shrink)

In their response to ‘Public interest in health data research: laying out the conceptual groundwork’, Grewal and Newson critique us for inattention to the law and putting forward an impracticably broad conceptual understanding of public interest. While we agree more work is needed to generate a workable framework for Institutional Review Boards/Research Ethics Committees, we would contend that this should be grounded on a broad conception of public interest. This broadness facilitates regulatory agility, and is already reflected by some current (...) frameworks such as that found in the guidelines approved under Australia’s Privacy Act. It remains unclear which elements of our broad account Grewal and Newson would reject, or indeed where the substantive disagreement with our position lies. (shrink)

RESUMEN Se analiza si la versión de la justicia como equidad, presentada en El liberalismo político, es genuinamente una concepción política. Se examina el problema de la razonabilidad de las doctrinas comprehensivas, y se indaga luego si el argumento en dos etapas afecta la integridad estructural del liberalismo político. Se concluye que J. Rawls fracasa en su intento de justificar un liberalismo independiente de una doctrina comprehensiva de carácter liberal. ABSTRACT The article analyzes whether the conception of justice as fairness, (...) set forth by Rawls in Political Liberalism, is a genuine political conception. It first examines the issue of reasonableness of comprehensive doctrines and then goes on to inquire whether the two-step argument affects the structural integrity of political liberalism. The paper concludes that J. Rawls fails in his attempt to justify liberalism independently of a comprehensive liberal doctrine. (shrink)

El bioderecho es un neologismo que trata las reglas jurídicas de comportamiento en el contexto de cuestiones bioéticas; se ocupa también del hombre, su dignidad, vida e identidad. El presente estudio descriptivo busca atribuir significado al concepto de dignidad en dos modelos de bioderecho, que develan el estatuto jurídico reconocido por estos a los adultos mayores. Se aplica el método de análisis elaborado por Laura Palazzani. Los resultados evidencian diferencias en el contenido del concepto de dignidad y, por ende, en (...) el estatuto jurídico reconocido a las personas mayores. (shrink)

Biotechnology might contribute to solving food safety and security challenges. However, gene technology has been under public scrutiny, linked to the framing of the media and public discourse. The study aims to investigate people’s perceptions and acceptance of food biotechnology with focus on transgenic genetic modification versus genome editing. An online experiment was conducted with participants from the United Kingdom and Switzerland. The participants were presented with the topic of food biotechnology and more specifically with experimentally varied vignettes on transgenic (...) and genetic modification and genome editing. The results suggest that participants from both countries express higher levels of acceptance for genome editing compared to transgenic genetic modification. The general and personal acceptance of these technologies depend largely on whether the participants believe the application is beneficial, how they perceive scientific uncertainty, and the country they reside in. Our findings suggest that future communication about gene technology should focus more on discussing trade-offs between using an agricultural technologies and tangible and relevant benefits, instead of a unidimensional focus on risk and safety. (shrink)

Earp et al. (2024) sketch a thought-provoking potential use of generative AI to enhance supported decision-making for adults who have lost capacity/competence to make their own medical decisions. T...

This is a short preface to an edited collection, 'Agency and Action'.

Explores the theme of aesthetic agency and its potential for social and political progress.

This book discusses 'how' to respectfully and responsibly include pregnant women in clinical research. In sharp contrast, the existing literature predominantly focuses on the reasons 'why' the inclusion of pregnant women in clinical research is necessary - viz., to develop effective treatments for women during pregnancy, to promote fetal safety, to reduce harm to women and fetuses from suboptimal care, and to allow access to the benefits of research participation. This book supports the shift to a new default position, whereby (...) pregnant women are included in clinical research unless researchers argue convincingly for their exclusion. This shift raises many as yet unexplored ethical and policy questions about existing barriers to the equitable inclusion of pregnant women in research. This book is original in three key ways. First, it presents an unparalleled depth of analysis of the ethics of research with pregnant women, bringing together many of the key authors in this field as well as experts in research ethics and in vulnerability who have not previously applied their work to pregnant women. Second, it includes innovative theoretical work in ethics and disease specific case studies that highlight the current complexity and future challenges of research involving pregnant women. Third, the book brings together authors who argue both for and against including more pregnant women in formal clinical trials. (shrink)

The article addresses Europeanization of social movements in the context of the European Sovereign Debt Crisis. Europeanization occurs when movements collaborate, or make horizontal communicative linkages with movements in other countries, contest authorities beyond the state, frame issues as European and claim a European identity. The article presents a theoretical framework and research design for measuring the degree of social movement Europeanization followed by results of a pilot study on mobilization in Spain and Greece during 2011. While many contentious action (...) events studied only encompassed the domestic arena, the pilot study showed a relatively high degree of Europeanization in the Greek case, suggesting the viability of future research.El presente artículo aborda la europeización de los movimientos sociales en el contexto de la crisis de la deuda soberana europea. La europeización se produce cuando los movimientos colaboran, o establecen vínculos horizontales, con movimientos de otros países, contestan a las autoridades más allá de los límites del Estado-nación, identifican cuestiones como europeos y reclaman una identidad europea. El artículo presenta un marco teórico y un diseño investigación para medir el grado de europeización de los movimientos sociales seguido por los resultados de un estudio piloto de la movilización en España y Grecia durante el año 2011. Mientras que muchas de las acciones de protesta estudiadas solamente apelaban al ámbito doméstico, el estudio piloto muestra un relativamente alto grado de europeización en el caso griego, lo que sugiere la viabilidad de futuras investigaciones. (shrink)

We address Dubourg and Baumard's claim that imaginary worlds are most appealing early in the lifespan when the exploratory drive is highest. Preschool-age children prefer fictions set in the real world, and fantastical information can be difficult for children to represent in real time. We speculate that a drive to explore imaginary worlds may emerge after children acquire substantial real-world skills and knowledge. An account of age effects on fictional preferences should encompass developmental change.

In the history of its reception, the myth of Medea has always been of prime importance for reflections on an awareness of civilization crisis. This process culminates in the modern age, and especially so with Pier Paolo Pasolini’s exceptionally significant version of the Medea story. Pasolini’s far-seeing and complex poetics of cinema combines the ancient myth with sources drawn from the history of religions and thereby exposes the concept of social naturalness as ideologically posited. Against an ideology of the allegedly (...) natural, his „Medea“ brings to bear an ethnoaesthetic mythography, which casts doubt on the postulate of the progress of civilization. To be sure, in the context of modernism, a rehabilitation of religious myth is impossible except in a mode of aesthetic illusion. But it is the fiction of ›mythopoiesis‹ which assures that such an enterprise can make sense, if only in an imaginary way. (shrink)

Introducción: La relación entre la comida y cultura es bastante amplia, por ello, se expone la agenda de investigación en torno al tema, a través de la revisión de artículos indexados publicados entre el 2016 y el 2022. Objetivo: sintetizar la producción académica de los últimos años teniendo en cuenta los temas claves, los países de producción y las corrientes teórico-metodológicas utilizadas en los diseños de investigación. Metodología: Revisión documental integrativa. Conclusiones: La literatura encontrada se presenta a través de seis (...) ejes temáticos grandes: alimentos y medicina, identidad y nación, transmisión de saberes, relaciones G-locales y dimensiones sociales. (shrink)

This paper deals with one of Plutarch’s favourite subjects - the relation between human beings and animals. In order to gain new insight into this topic, a three-step approach is chosen: First, the paper investigates some of the essential ideas concerning animals (their soul, their emotions and intellectual capacities) to be found in Plutarch’s work and the vocabulary he employs. Secondly, the paper focuses on Plutarch’s unique style of writing and his skillful use of the Socratic method to guide his (...) audience. Thirdly, Plutarch’s personal opinion will be analyzed. In the first part of this paper, Plutarch’s work serves as a lens to unfold the nature of contemporary discourses on the relation between man and animal (with broad agreement on some points and controversies about others) as well as the different notions associated with the terms theria and zoa. A special focus is placed on the ‘Gryllos’ (mor. 985 d-992 e). Plutarch’s treatise ‘Whether the creatures of the land or the creatures of the sea have more phronesis’ (mor. 959 b-985 c) is an important contribution to the field of animal ethics and the subject of the second part of this paper. The ingenious structure of said text illustrates Plutarch’s qualities as a writer and how carefully he employs maieutic methods to support his readers in developing their own point of view. The third part of this paper is devoted to passages from Plutarch’s oeuvre which illustrate his personal position in the debate on the relation between human beings and animals. He is clearly aware that life on earth is inextricably interwoven with acts of killing and destruction, yet he also believes that observing animals has some lessons to offer to mystery religions. Plutarch describes animals as ‘clearer mirrors to the divine’, thereby illustrating that he perceives creatures - whether tiny or large - as a unique chance to gain a better understanding of the miracle of life. In this capacity animals provide a way for human beings to improve their insight into the nature of the divine. (shrink)

Giusti, Miguel. Disfraces y extravíos. Sobre el descuido del alma. Ciudad de México: Fondo de Cultura Económica, 2016. 248 pp.

Research on mental health of non-professional caregivers has focused on caregivers of people with specific diseases, especially dementia. Less is known about caregivers of people with other diseases. The aims of this study were (a) to determine the caregivers’ emotional state in a random sample of caregivers of people in situations of dependency, (b) to analyze the association between each disease of the care-recipient (a variety of 23 diseases included in the International Classification of Diseases) and the emotional state of (...) the caregiver, and (c) based on the theoretical model, to analyze the relationship of the different study variables in the appearance of the emotional distress of the caregiver. A sample of 491 non-professional caregivers was selected randomly (89.0% women, average age 55.3 years). Trained psychologists collected sociodemographic and care-related characteristics and evaluated the global emotional distress, somatic symptoms, anxiety-insomnia, social dysfunction, depression, probable mental disorder case, self-esteem and social support. It was found that (a) the caregivers showed moderate emotional distress, and 33.8% presented a probable mental disorder. (b) Caring for a care-recipient with cat's cry syndrome or epilepsy was related to suffering from social dysfunction, and caring for a care-recipient with autism was related to having a probable mental health case. (c) Social support mediated the relationship between social class, daily hours of care, monthly family income, self-esteem and global emotional distress. There is an important impact on the emotional state of the caregivers. This impact was similar in caregivers of care-recipients with different diseases, except in caregivers caring for a care-recipient with cat's cry syndrome or epilepsy (related to social dysfunction), and in caregivers caring for a care-recipient with autism (related to having a probable mental health case). (shrink)

This paper presents a framework for the design of human-centric identity management systems. Whilst many identity systems over the past few years have been labelled as _human-centred,_ we argue that the term has been appropriated by technologists to claim moral superiority of their products, and by system owners who confuse administrative convenience with benefits for users. The framework for human-centred identity presented here identifies a set of design properties that can impact the lived experience of the individuals whose identity is (...) being managed. These properties were identified through an analysis of public response to 15 historic national identity systems. They capture the practical design aspects of an identity system, from structural aspects that affect the flow of information - _Control Points, Subject Engagement, Identity Exposure, Population Coverage_—to the metrical aspects that considers how information is used and perceived—_Expert Interpretation, Population Comprehension, Information Accuracy, Information Stability, Subject Coupling, Information Polymorphism_. Any identity system can be described in terms of these fundamental properties, which affect individuals’ lived experience, and therefore help to determine the acceptance or rejection of such systems. We first apply each individual property within the context of two national identity systems—the UK DNA Database and the Austrian Citizen Card, and then also demonstrate the applicability of the framework within the contexts of two non-government identity platforms—Facebook and Phorm. Practitioners and researchers would make use of this framework by analysing an identity system in terms of the various properties, and the interactions between these properties within the context of use, thus allowing for the development of the potential impacts that the system has on the lived experience. (shrink)