'We came here to stay': Making biobanks worth maintaining in Spain.

The oscillation between the promise and the disappointment of biobanks as techno-scientific infrastructures for contemporary biomedical research is frequent in the literature. In this article, we analysed how the precariousness of biobanks is leading to shifts in the focus of biobanking in Spain, where there are calls for some practices to be rearticulated. Drawing upon fieldwork and interviews with biobankers, we looked at which practices are highlighted for change to make biobanks worth maintaining and keep them afloat. We analysed these practices to unpack the values biobankers deploy to make sense of biobanking and turn it into two worthiness criteria: social return and dynamism. These criteria are intertwined and revolve around ethically calibrating the accumulation and sharing practices, 'sharing but not too much'. The porosity of biobanking practices and legislation, not to mention over a decade of austerity measures make biobanks fragile scientific infrastructures in Spain. We examine how biobanking practices are shifting in Spain to stay in the precarious techno-scientific present while challenging assumptions on cryopreservation and preparedness. Our local account highlights the relevance of further inquiries on shifts in biobanking to attend to which kinds of biomedical research and knowledge might be coproduced by such infrastructural reconfigurations.

Ethical implications of home telecare for older people: a framework derived from a multisited participative study.

CONTEXT: Telecare and telehealth developments have recently attracted much attention in research and service development contexts, where their evaluation has predominantly concerned effectiveness and efficiency. Their social and ethical implications, in contrast, have received little scrutiny. OBJECTIVE: To develop an ethical framework for telecare systems based on analysis of observations of telecare-in-use and citizens' panel deliberations. DESIGN: Ethnographic study (observation, work shadowing), interviews, older citizens' panels and a participative conference. SETTING: Participants' homes, workplaces and familiar community venues in England, Spain, the Netherlands and Norway 2008-2011. RESULTS: Older respondents expressed concerns that telecare might be used to replace face-to-face/hands-on care to cut costs. Citizens' panels strongly advocated ethical and social questions being considered in tandem with technical and policy developments. Older people are too often excluded from telecare system design, and installation is often wrongly seen as a one-off event. Some systems enhance self-care by increasing self-awareness, while others shift agency away from the older person, introducing new forms of dependency. CONCLUSIONS: Telecare has care limitations; it is not a solution, but a shift in networks of relations and responsibilities. Telecare cannot be meaningfully evaluated as an entity, but rather in the situated relations people and technologies create together. Characteristics of ethical telecare include on-going user/carer engagement in decision making about systems: in-home system evolution with feedback opportunities built into implementation. System design should be horizontal, 'two-way'/interactive rather than vertical or 'one-way'. An ethical framework for telecare has been developed from these conclusions (Table 1).

[The euthanasia law and professional experiences: tensions in clinical practice]. / La ley de eutanasia y experiencias profesionales: tensiones en la práctica clínica.

OBJECTIVE: To analyze the process of assisted death provision in Catalonia and identify the main tensions, difficulties, and/or sources of discomfort related to professional practice. METHOD: A qualitative study was conducted based on interviews (n=29) and focus groups (n=19) with professionals who participated in the euthanasia process. The selection of participants combined the snowball and maximization of variability procedures, taking into account the variables of professional profile, setting, gender, age and territoriality. Intentional and theoretical sampling process. RESULTS: The assisted death process is divided into four main moments: 1) reception of the request, 2) medical-bureaucratic procedure, 3) the actual procedure, and 4) closure. At each of these moments, difficulties arise that can be a source of discomfort and have to do with the limits and tensions between the legal and moral, the conception of one's own professional role, the lack of recognition of some professional roles, stress and overload, the lack of formal and informal support, and the relationship with the patient and his/her family. The bureaucratic-administrative stress derived from a protective law, with both prior and subsequent verifying control, stands out, given that it stresses the professionals immersed in a healthcare system already under high pressure after budget cuts and the COVID-19 epidemic. CONCLUSIONS: Throughout the assisted death process, the sources of distress are diverse and of a psychological, psychosocial, and structural nature. These results may lead to interventions for psychological and peer support, information, training, institutional involvement, and burden reduction.

Challenging "The Hands of Technology": An Analysis of Independent Living for People with Intellectual Disabilities.

Technology has been holding out the promise of facilitating greater autonomy and improving care for people in a situation of dependency. This trend is expected to grow and this is happening precisely at a time of expansion of the so-called Independent Living paradigm. In this context, however, disability activists are generally suspicious of approaches based on being "left" in the hands of technology. They instead advocate for "subordinating hands" to their ability to decide, a principle that stands in tension with the field of intellectual disability, where individuals are perceived as intrinsically unable to make "good decisions". Therefore, the aim of this paper is to provide insight into the uses and developments of technologies with regard to care and autonomy for people with intellectual disabilities. By ethnographically examining the case of a specific technology; QR (quick response) codes in the context of an independent living service, and in the framework of Science and Technology Studies and Disability Studies, the paper reveals the role and possibilities of care and autonomy technologies for people with intellectual disabilities. Based on these findings, and by thinking from what we could define as "within a sociotechnical assemblage", this paper aims to rethink the ways in which technologies for independent living can be used in the field.

Robots in Healthcare? What Patients Say.

In this paper, we analyse patients' perspectives on the introduction of artificial intelligence (AI) and robotic systems in healthcare. Based on citizens' experiences when hospitalised for COVID-19, we explore how the opinions and concerns regarding healthcare automation could not be disassociated from a context of high pressure on the health system and lack of resources, and a political discourse on AI and robotics; a situation intensified by the pandemic. Thus, through the analysis of a set of interviews, a series of issues are identified that revolve around the following: the empirical effects of imagined robots, the vivid experience of citizens with the care crisis, the discomfort of the ineffective, the virtualised care assemblages, the human-based face-to-face relationships, and the automatisation of healthcare tasks. In light of these results, we show the variability in patients' perspectives on AI and robotic systems and explain it by distinguishing two interpretive repertoires that account for different views and opinions: a well-being repertoire and a responsibility repertoire. Both interpretative repertoires are relevant in order to grasp the complexity of citizens' approaches to automatisation of healthcare. Attending to both allows us to move beyond the dominant (political) discourse of technology markets as the only way to respond to healthcare challenges. Thus, we can analyse and integrate patients' perspectives to develop AI and robotic systems in healthcare to serve citizens' needs and collective well-being.

The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes?

Freezers with biospecimen deposits became biobanks and later were networked at the pan-European level in 2013 under the Biobanking and BioMolecular Resources Research Infrastructure-European Research Infrastructure Consortium (BBMRI-ERIC). Drawing on document analysis about the BBMRI-ERIC and multi-sited fieldwork with biobankers in Spain from a science and technology studies approach, we explore what biobanks are expected to do and become under the BBMRI-ERIC framework, and how infrastructural transitions promote particular transformations in biobanking practices. The primary purpose of biobanks in Europe is presented as being to become mediators in contemporary biomedical research (global sharing nodes) distribution, and distributed nodes of samples and their associated data. We argue that infrastructural transitions are complicated and heterogeneous, giving rise to unattended local concerns on adjusting their practices to fit into the BBMRI-ERIC framework, even for non-members, as the case of Spain illustrates, where "old practices" of collection and storage are questioned. In this article, we aim to encourage qualitative studies to explore the lags between pan-European policies and prospects, different contextual interpretations, and biobanking reconfigurations as an opportunity to explore what that lag is made of (e.g. tensions with "old practices," unresolved conflicts with the national agendas, reservations on a possible centralization of the biobanking practices by regional biobanks, lack of funding, etc.). Such research could enrich not only policy guidance, but also the understanding of technoscientific infrastructures' scalability.

[Robots for care. The ethics of measured action in the face of uncertainty]. / Robots para los cuidados. La ética de la acción mesurada frente a la incertidumbre.

Beyond the utopian or dystopian scenarios that accompany the progressive introduction of robots for care in daily environments, their use in the medical field entails controversies that require alternative forms of ethical responsibility. From this general objective, in this article we propose a series of reflections to articulate an ethical framework capable of orienting the introduction and use of robots in the field of health. The presented proposal is developed from a series of considerations about robots and care, as a starting point to develop an ethical framework based on the principle of precaution and measured action. It proposes a non-essentialist conceptualization of robots, that emphasizes their relational and contextual nature, understanding robots as heterogeneous artifacts that are constituted in a network of therapeutic relationships and that mediate our care relationships. This approach has a set of implications, which we articulate around measured action as an ethical proposal. The measured action, in our interpretation, responds to the principle of precaution and is configured through four dimensions: (1) the institutional commitment, (2) which integrates the fears and hopes of all those concerned actors, (3) which is realized carrying out progressive and revocable actions, under continuous monitoring and evaluation, and (4) which incorporates into the design process those actors practicing ″good care″.

[Ethical, legal and social issues publications on biobanks 2011-2018. A scoping review.] / Publicaciones sobre los aspectos éticos, legales y sociales de los biobancos entre 2011-2018. Una revisión panorámica.

BACKGROUND: Human-based biobanks have been presented as intermediary agents between donors/participants, the scientific community, the healthcare system, and patients. The objective of this systematic review was to contribute with an updated thematic synthesis in Spanish of the international literature (2011-2018) regarding ethical, legal, and social issues on contemporary biobanks. METHODS: A scoping review and thematic analysis were carried out on biobanks' ethical, legal, and social issues. The following databases were searched: Web of Science, SciELO, and Dialnet. The review included 2011-2018 publications with the term "biobank" or "biobanco" in English, Spanish, Portuguese, and French. RESULTS: A total of 153 publications were analyzed. The most published themes were: informed consent, biobanks as a scientific tool, other ethical issues, public engagement, and regulation. While documents published in English provide studies with a broader anthropologic approach and display the participatory turn, in Spanish a technical approach is more common. Aportar datos y cifras principales. CONCLUSIONS: Publications confirm and support biobanks' relevance in current and future biomedical research, but also illustrate the entanglement of a diverse range of healthcare institutions and relations. Biobanks' techno-scientific issues cannot be split from the ethical, legal, and social ones or place them as secondary; all of them are co-produced. This review points to current topics and challenges which need to be addressed to establish transparent, accountable, dynamic, and trust-worthy biobanks.

OBJETIVO: Los biobancos, con muestras de origen humano, han sido definidos como agentes intermedios entre los donantes/participantes, la comunidad científica, el sistema sanitario y los pacientes. El objetivo de esta revisión fue aportar una revisión de la literatura internacional actualizada (2011-2018), que incluyera publicaciones en español y sintetizara los temas más publicados sobre los aspectos éticos, legales y sociales de los biobancos. METODOS: Se llevó a cabo una revisión panorámica y un análisis temático de las publicaciones que abordaban los aspectos éticos, legales y sociales de los biobancos. Se realizaron búsquedas en las bases de datos Web of Science, SciELO y Dialnet. Se incorporaron publicaciones entre 2011-2018 con el término "biobank" o "biobanco" en inglés, español, portugués y francés. RESULTADOS: Se incluyeron 153 publicaciones. Los temas con más publicaciones fueron: consentimiento informado, el biobanco como herramienta científica, otras cuestiones éticas, participación ciudadana y regulación. Se encontró una clara diferencia entre las publicaciones en inglés y español. Las primeras se centraron en el giro participativo, mientras que las segundas se situaron más en una esfera técnica. CONCLUSIONES: Las publicaciones señalan la relevancia de los biobancos en la investigación biomédica contemporánea y futura, así como el entramado de instituciones y relaciones que los componen. Las cuestiones científico-técnicas de los biobancos no pueden separarse de las éticas, legales y sociales, ni relegarlas a un segundo plano, ya que se coproducen. La revisión sintetizó los temas y retos existentes para establecer unos biobancos transparentes, responsables, dinámicos y que fomenten la confianza ciudadana.

Children's Imaginaries of Human-Robot Interaction in Healthcare.

This paper analyzes children’s imaginaries of Human-Robots Interaction (HRI) in the context of social robots in healthcare, and it explores ethical and social issues when designing a social robot for a children’s hospital. Based on approaches that emphasize the reciprocal relationship between society and technology, the analytical force of imaginaries lies in their capacity to be embedded in practices and interactions as well as to affect the construction and applications of surrounding technologies. The study is based on a participatory process carried out with six-year-old children for the design of a robot. Imaginaries of HRI are analyzed from a care-centered approach focusing on children’s values and practices as related to their representation of care. The conceptualization of HRI as an assemblage of interactions, the prospective bidirectional care relationships with robots, and the engagement with the robot as an entity of multiple potential robots are the major findings of this study. The study shows the potential of studying imaginaries of HRI, and it concludes that their integration in the final design of robots is a way of including ethical values in it.

[Aging at home with telecare in Spain. A dicourse analysis]. / Envejecer en casa con teleasistencia en España. Un análisis del discurso.

Caring for the elderly is turning to forms of community care and home care. Telecare is one of those emergent modalities of caring. This article will explore the meanings that older people give to the experience of staying at home in later life by using telecare. Discourse analysis is used to examine a set of focus groups and interviews with telecare users from different cities of Catalonia (Spain). The outcomes include three interpretative repertoires that we called: "Aging at home", "normal aging" and "unsafe aging". For each repertoire we examine how the permanence of older people in their homes is accounted, and which role telecare plays in such experience.

Análise bibliométrica e de rede dos 40 anos da revista psicologia: ciência e profissão / Bibliometric and network analysis of the 40 years of the journal psicologia: ciência e profissão / Análisis bibliométrico y de redes de los 40 años de la revista psicologia: ciência e profissão

Resumo No ano de celebração dos 40 anos da revista Psicologia: Ciência e Profissão cabe verificar como esta revista foi delineando a sua própria história e do campo da Psicologia no Brasil. Neste sentido, o presente artigo teve como objetivo delimitar os principais autores, instituições e palavras-chave que trouxeram a revista até o momento atual. Partindo de uma análise bibliométrica e de redes, obteve-se como resultado os temas, autores e instituições que tiveram protagonismo e a interação entre esses atores. As conclusões apontam que a revista assume uma postura epistemológica pluralista e que tanto os aspectos científicos como os relacionados a práticas e atuação dos profissionais se mantêm ao longo desses 40 anos.

Abstract In the year of celebration of the 40th anniversary of the journal Psicologia: Ciência e Profissão (Psychology: Science and Profession), it is necessary to review how this journal has been outlining its own history and the field of Psychology in Brazil. In this sense, this article aimed to delimit which were the main authors, institutions and keywords that brought the journal to the present moment. Based on a bibliometric and network analysis, it was obtained as a result which themes, authors and institutions had protagonism and interaction among these actors. The conclusions indicate that the journal assumes a pluralist epistemological posture and that both the scientific aspects and those related to the practices and performance of professionals are maintained throughout these 40 years.

Resumen En el año en que se celebra el 40º aniversario de la revista Psicologia: Ciência e Profissão (Psicología: Ciencia y Profesión), es necesario revisar cómo esta revista ha ido perfilando su propia historia y el campo de la Psicología en el Brasil. En este sentido, este artículo pretendía delimitar cuáles fueron los principales autores, instituciones y palabras clave que llevaron a la revista al momento actual. Basándose en un análisis bibliométrico y de redes, se obtuvo como resultado qué temas, autores e instituciones eran los principales e interacción entre estos actores. Las conclusiones indican que la revista asume una postura epistemológica pluralista y que tanto los aspectos científicos como los relacionados con las prácticas y el desempeño de los profesionales se mantienen a lo largo de estos 40 años.

Care networking: a study of technical mediations in a home telecare service.

This article examines the processes of technical mediation within familial care networks based on a study of home telecare targeted at older people. Supported by contributions from the actor-network theory as part of the social psychology of science and technology, these processes of technical mediation are analyzed using a qualitative approach. The data were gathered through six focus groups and four in-depth interviews; the participants in the study included users, relatives and formal carers. Thematic analysis techniques encompassing the information were used, revealing the effects on the patterns of caring relationships. The results show the interplay between presence-absence made possible by the devices; the two-way direction of care between the older people and the artifacts; and the process of sustaining care using the technology. We conclude that care should be seen as a socio-technical network where technology plays an active role in sustaining family relationships.

Envejecer en casa con teleasistencia en España. Un análisis del discurso / Aging at home with telecare in Spain. A dicourse analysis

Resumen El cuidado de las personas mayores está dando un giro hacia modalidades de atención comunitaria y domiciliaria. La teleasistencia es una de dichas modalidades. Este artículo se propone explorar los significados que las personas mayores asocian a la experiencia de permanecer en el hogar a edades avanzadas con ayuda de la teleasistencia. Se utiliza el análisis del discurso para examinar un conjunto de grupos de discusión con y de entrevistas a usuarios de teleasistencia de diferentes ciudades de Cataluña (España). Como resultado se presentan tres repertorios interpretativos denominados: “envejecimiento en casa”, “envejecimiento normal” y “envejecimiento inseguro”. Para cada uno se examina la forma como describen la permanencia de las personas mayores en sus hogares, así como el papel que la teleasistencia juega en dicha experiencia.

Abstract Caring for the elderly is turning to forms of community care and home care. Telecare is one of those emergent modalities of caring. This article will explore the meanings that older people give to the experience of staying at home in later life by using telecare. Discourse analysis is used to examine a set of focus groups and interviews with telecare users from different cities of Catalonia (Spain). The outcomes include three interpretative repertoires that we called: “Aging at home”, “normal aging” and “unsafe aging”. For each repertoire we examine how the permanence of older people in their homes is accounted, and which role telecare plays in such experience.

Categorías identitarias espaciales para la comprensión de las controversias públicas: análisis de su empleo en Cataluña a propósito de los debates sobre el agua en España / Spatial Identity Categories for the Understanding of Public Controversies: Analyzing the Use of these Categories in the Context of Water Debates in Spain

Para acercarnos a cómo los ciudadanos catalanes dan cuenta de las controversias hídricas en España, se analizaron seis grupos de discusión realizados en Cataluña durante 2006. Se utilizó el concepto "identidad social espacial" para las interpretaciones, adaptándolo para resaltar su carácter interaccional. Al rastrear las categorías espaciales empleadas en las discusiones, se identificó la variedad de denominaciones usadas para debatir sobre los problemas hídricos en España. El análisis se centra en las denominaciones más usadas para determinar su utilidad e identificar las acciones discursivas que los participantes realizan con ellas. Los resultados indican que los hablantes dan cuenta de los "problemas del agua" movilizando una geografía política del sentido común que resalta el carácter socioespacial y conflictivo de los asuntos hídricos.

In order to know how Catalonian citizens account water controversies in Spain, we analyzed six focus groups carried out in Catalonia in 2006. A concept of 'urban social identity' is used for our interpretations, having been adapted to highlight its interactional character. Tracking the spatial categories used in the discussions, we identified the variety of denominations employed to debate water problems in Spain. The analysis is focused on the most frequent categories to establish their utility and identify discursive actions that participants produce. Results indicate that speakers account the "water problems" mobilizing a common sense political geography that highlights the socio-spatial and conflicting character of water issues.

Identidad de lugar en usuarios de teleasistencia: un análisis conversacional / Telecare user's place identity: A conversation analysis

Este artículo presenta un análisis discursivo de la identidad de lugar en usuarios de teleasistencia domiciliaria. Dicho análisis es parte de los resultados de dos proyectos de investigación interesados por el cuidado de las personas mayores y dependientes en España. Los datos analizados se extraen de un conjunto de diez grupos de discusión llevados a cabo en Cataluña durante 2009 (n=62). A partir del rastreo del uso que los participantes hacen de una frase hecha ("no hay lugar como el hogar"), se propone un examen secuencial y detallado de los datos inspirado en el análisis conversacional y la psicología discursiva. Este examen resalta el carácter co-producido de la identidad de lugar y llama la atención sobre diferentes herramientas discursivas que los participantes emplean para enfrentar las amenazas que la conversación le plantea a dicha identidad. El resultado es la descripción del contexto en el que se produce una identidad de hogar que da sentido a la preferencia que los participantes muestran por envejecer en casa. Dicha identidad de hogar se presenta como un recurso de orden explicativo y retórico.

This article presents a discourse analysis of place-identity in home telecare users. This analysis is part of the results of two research projects concerned with the care of old and dependent people in Spain. The data analyzed come from a set of ten focus groups conducted in Catalonia in 2009 (n=62). Drawing from tracking the participants' use of a fixed phrase ("there is no place like home"), a sequential and detailed examination of the data inspired by conversation analysis and discursive psychology is proposed. This examination highlights the co-produced nature of place-identity and draws attention to different discursive tools which the participants use to deal with threats that conversation supposes to that identity. The result is the description of the context in which a home-identity that gives meaning to the participants' preference for aging at home is produced. This home-identity is presented as an explanatory and rhetoric resource.

George Herbert Mead y la psicología social de los objetos / George Herbert Mead and the social psichology of objects

Hace más de una década que diversas disciplinas de las ciencias sociales vindican la necesidad de una semiología de lo material. Sin duda, la realidad social es eminentemente simbólica, pero tal simbolismo no se ciñe exclusivamente a lo textual, discursivo o lingüístico. Existen prácticas más allá de esta dimensión que producen sentido y significado. Los objetos y las cosas están implicados en ellas. ¿Qué elementos definen semejante semiología? ¿Cómo hay que interpretar esas prácticas? ¿Cómo se relacionan con la producción de lo social? Las respuestas vienen de la mano de la formulación de una cultura material. Mas la elaboración de ésta exige la revisión de las propuestas que al respecto realizó G.H.Mead. Efectivamente, en su obra es posible encontrar una explicación para el papel que los objetos juegan en la constitución y mantenimiento de identidades sociales, entender cómo confieren al self un ambiente estable y familiar, examinar cómo los actos de tocar y comprender, en tanto que relación básica con lo material, detentan un papel clave en la construcción y mantenimiento de la realidad, y, en definitiva, observar como la relación del self con el mundo físico se configura como relación social. En el presente trabajo revisaremos todas estas cuestiones. Y concluiremos que constituyen los primeros pasos para esbozar una Psicología Social de los objetos.