When science offers salvation. Patient advocacy & research ethics

“The duty to respect individual choice is one element of the respect-for-persons principle. Respect for persons also incorporates an obligatiom to protect from harm people who cannot make autonomus choices. Thous, the respect-for-persons principle supports granting only individuals making autonomous decisions the liberty to accept experimental risks.

What makes someone’s choice an autonomous one? At a minimum, the person must have a reasonable understanding of the basic information relevat to the choice and be free of undue pressure to decide in a particular way.  A person makes an autonomous choice to enroll in a study or try an unproven agent when the decision is adequately informed and voluntary.

The need for adequate understanding underlies the ethical and regulatory requirement that people give informed consent to research participation. ”

p. 55


“Bioética no século XXI”



A obra coletiva “Bioética no Século XXI” encontra-se publicada e à venda na Amazon no seguinte link: https://www.amazon.com/dp/1983785148 .

Editada por Ana Figueiredo Sol e Steven S. Gouveia. Prefácio de Peter Singer.

Parte I: Direito e Bioética

  1. Eutanásia: Aspectos Jurídicos-Penais à Luz do Sistema Jurídico-Penal Português (Fernando Conde Monteiro)
  2. A Regulação da Procriação Medicamente Assistida em Portugal (Mariana Schafhauser Boçon)
  3. Bioética: Reflexões sobre Pesquisas com Seres Humanos à Luz da Perspectiva Brasileira (Márcia Cassimiro, Carlos Silva & Hully Falcão)
  4. Enquadramento Jurídico Luso-Brasileiro das Diretivas Antecipadas de Vontade (Sephora Marchesini)

Parte II: Problemas Tradicionais da Bioética

  1. Os Princípios Bioéticos como Reguladores do Consentimento Informado (Diana Coutinho)
  2. A “Erradicação” da Deficiência através do Aborto Selectivo: Eugenia Ilegítima? (Maria Beatriz Miranda)
  3. Paradoxos do Princípio de Autonomia (Luísa Portocarrero Silva)
  4. Notas para uma Reflexão sobre o Valor da Vida Fetal: do Enquadramento Internacional ao Contributo da Visão Habermasiana (Ana Figueiredo Sol)

Parte III: Bioética nos Contextos Profissionais

  1. O Médico na Procriação Medicamente Assistida: um Papel Meramente Técnico ou Profissional? (Rita Serejo & Miguel Ricou)
  2. O Enfermeiro como Garante da Equidade na Afetação de Recursos e no Acesso aos Cuidados de Saúde (Maria Lúcia Rocha)
  3. Ética na Transmissão de Más Notícias (João Lemos)
  4. Digital Storytelling in Healthcare and Breaking Bad News (Michael Meimaris & Maria Saridaki)

Parte IV: Bioética e Genética

  1. Biometria e Privacidade: Desafios Bioéticos na Cooperação Policial e Judicial na União Europeia (Sara Matos)
  2. Retratos Biogenéticos no Combate à Criminalidade: Desafios Éticos e Sociais (Filipa Queirós)
  3. O “Suspeito Genético”: Desafios Bioéticos na Partilha Transnacional de Informação Genética Forense (Helena Machado, Marta Martins & Filipe Santos)

Parte V: A Morte na Bioética

  1. A Eutanásia: um Olhar Bioético (Maria Teresa Mendonça)
  2. Considerações Bioéticas Sobre o Nascer e o Morrer no Século XXI (Ana Paula França)
  3. Problemas Conceptuais e Morais na Prática Médica Actual: Sobre a Distinção entre “Matar” e “Deixar Morrer” (Steven S. Gouveia)

Parte VI: Bioética e Tecnologias do Futuro

  1. Alongar o Olhar, Medir o Passo, Desenhar Limites – em Torno da Reflexão Ética sobre os “Desafios Éticos das Novas Tecnologias” (Lucília Nunes)
  2. Transumanismo: Desafios e Perspectivas para a Filosofia Contemporânea (Leonardo Nunes Camargo)
  3. Roboética: Contexto Ético e Jurídico em que se Desenvolve a Programação Ética dos “Robôs Autónomos” (Ana Elisabete Ferreira)



“O verdadeiro encenador da nossa vida é o acaso – um encenador cheio de crueldade, misericórdia e encanto cativante”

“I put myself into his look, reproduced it in me, and from that perspective absorbed my reflection. The way I looked and appeared – I thought – I had never been that way for a single minute in my life. Not at school, not at university, not in my practice. Is it the same with others: that they don’t recognize themselves from the outside? That the reflection seems like a stage set full of crass distortion? That, with fear, they note a gap between the perception others have of them and the way they experience themselves? That the familiarity of inside and the familiarity of outside can be so far apart that they can hardly be considered familiarity with the same thing?”

“The stories others tell about you and the stories you tell about yourself: which come closer to the truth?”

“To understand yourself: is that a discovery or a creation?“

Night train to Lisbon, Pascal Mercier


“Cuidados e envelhecimento. Perspetivas da Enfermagem”


Enquanto profissionais de saúde, a maioria lida com o lado mais complicado e vulnerável da existência humana, em risco de esquecer tudo o resto e de tomar a doença, a incapacidade e a fragilidade pelo todo, quando se prestam cuidados a pessoas mais velhas. Como prosseguir com um olhar equilibrado sobre o envelhecimento, de dentro de uma das profissões centrais na prestação de cuidados – a Enfermagem – na garantia do bem‑estar e qualidade de vida, ao longo do processo de envelhecimento?

 Isabel Lage terá pensado estas e outras questões sobre o envelhecimento que se colocam nomeadamente no âmbito da Enfermagem e organizou o presente livro com duas secções, uma dedicada a Questões gerais sobre envelhecimento e saúde e outra aos Cuidados à pessoa idosa.

Na Coisas de Ler


“Anti-knowledge is power”

What has defined the West is the convergence between Rome and Athens. Pope Benedict XVI related the phenomenon in his memorable 2006 Regensburg lecture. The “inner rapprochement between Biblical faith and Greek philosophical inquiry’ ultimately “created Europe and remains the foundation of what rightly can be called Europe.” It is what makes the West, the West.
The core of this convergence is reason. It is reason, of course, that makes possible human flourishing through die acquisition and development of knowledge. The admonition in commerce and governance that executives and officials must “think outside the box” has nearly achieved bromide status. But it is the most sound of principles. “The box” constitutes our premises, what die former U.S. Secretary of Defense Donald Rumsfeld—with the humility one must have in the puzzling field of intelligence analysis—would presume to call the “known knowns.” Because knowledge itself constantly reminds us that our knowledge is apt to be imperfect, we frequently need to challenge our basic assumptions in order to solve the vexing problem or find the next Information Age innovation. That is why progress requires reason.

It is one of those cruel ironies that one regularly encounters in political discourse, then, that our society’s forces of anti-reason are known as “progressives”—proving yet again the wisdom in George Orwell’s observation that “the slovenliness of our language makes it easier for us to have foolish toughts.” They are winning, which in the context of this conference is illustrated by left-wing censorship’s destruction of our universities. Free speech, the vehicle of reason, is increasingly overwhelmed by narrative, die most potent weapon in the social justice warrior’s arsenal. Today, anti-knowledge is power.

Anti-knowledge is power
by Andrew C. McCarthy, The New Criterion January 2017, p. 14-18

À parte a análise facciosa do artigo, a ideia é desafiadora.



Space, placemaking and ownership

“Talk is mainly perceived as a phenomenon anchored in time. Temporality, sequentiality, segments, events, turns, and episodes: As these terms suggest, when people think of the conceptual categories of talk, they mainly think of time-based categories (Mehan, 1985 Mehan, H. (1985). The structure of classroom discourse. In T. A. Van Dijk (Ed.), Handbook of discourse analysis (Vol. 3, pp. 115–131). London, UK: Academic Press. [Google Scholar]). The literature on talk in learning discussions has not given sufficient consideration to the notions of space and place and has not sufficiently differentiated between time and space.

Space is a leading metaphor in the learning sciences. Following Bakhtin (1981 Bakhtin, M. M. (1981). The dialogic imagination. Austin, TX: University of Texas Press. [Google Scholar]), Wegerif (2007 Wegerif, R. (2007). Dialogic, educational and technology: Expanding the space of learning. New York, NY: Springer-Verlag.[Crossref][Google Scholar]) used the term dialogical space; Erduran, Simon, and Osborne (2004 Erduran, S., Simon, S., & Osborne, J. (2004). Tapping into argumentation: Developments in the application of Toulmin’s argument pattern for studying science discourse. Science Education, 88(6), 915933. doi:10.1002/(ISSN)1098-237X[Crossref], [Web of Science ®][Google Scholar]) used the term argumentative space; Mercer and Littleton (2007 Mercer, N., & Littleton, K. (2007). Dialogue and the development of children’s thinking: A sociocultural approach. London, UK: Routledge. [Google Scholar]) used the intersubjective space; Chin and Osborne (2010 Chin, C., & Osborne, J. (2010). Supporting argumentation through students’ questions: Case studies in science classrooms. Journal of the Learning Sciences, 19(2), 230284. doi:10.1080/10508400903530036[Taylor & Francis Online], [Web of Science ®][Google Scholar]) used the terms questioning space and negotiation space; and Schwarz and Asterhan (2011 Schwarz, B. B., & Asterhan, C. S. C. (2011). E-moderation of synchronous discussions in educational settings: A nascent practice. Journal of the Learning Sciences, 20(3), 395442. doi:10.1080/10508406.2011.553257[Taylor & Francis Online], [Web of Science ®][Google Scholar]) used the term discussion space. The literature is replete with the term space, yet its definition needs to be clarified.

The term space has historically held multiple, sometimes contradictory, meanings. For the atomists, space was the place of the void in which the atoms move and collide (Berryman, 2010 Berryman, S. (2010). Democritus. Retrieved from http://plato.stanford.edu/entries/democritus/in [Google Scholar]). Space was perceived as infinite, as is the quantity of atoms. This dual infinity is the mechanism behind the possibility of movement. In Aristotle’s Physics, place rather than space functioned as the actual container of the thing. Despite this difference, both Aristotle and Democritus perceived space and place as ontologically substantive. It was only later, first in Theophrastus’s Physics and then in Leibniz’s writings, that space was understood as an organizational order projected on reality by the subject (Casey, 1997 Casey, E. S. (1997). The fate of place: A philosophical history. Berkeley, CA: University of California Press. [Google Scholar]). This view was more fully articulated in Kant’s account of space as a transcendental intuition that basically constitutes the mind.

In his seminal work The Production of Space, Lefebvre (1967/1991 Lefebvre, H. (1991). The production of space. Oxford, UK: Blackwell. (Original work published 1967) [Google Scholar]) highlighted the importance of studying space as a specific, socially produced order that results from human activity. From this standpoint, space is the outcome of interactions, and the ideational aspect of space—the concrete concept of the space people have—follows and mirrors material relations. Mondada (2013 Mondada, L. (2013). Interactional space and the study of embodied talk-in-interaction. In P. Auer, M. Hilpert, A. Stukenbrock, & B. Szmrecsanyi (Eds.), Space in language and linguistics: Geographical, interactional and cognitive perspectives (pp. 247275). Berlin, Germany: De Gruyter.[Crossref][Google Scholar]) relied on Goffman’s (1961 Goffman, E. (1961). Encounters: Two studies in the sociology of interaction. Indianapolis, IN: Bobbs-Merrill. [Google Scholar]) idea of a “situated activity system” to elaborate the notion of interactional space in face-to-face talk:

The interactional space is constituted through the situated, mutually adjusted changing arrangements of the participants’ bodies within space, as they are made relevant by the activity they are engaged in, their mutual attention and their common focus of attention, the objects they manipulate and the way in which they coordinate in joint action. (Mondada, 2013 Mondada, L. (2013). Interactional space and the study of embodied talk-in-interaction. In P. Auer, M. Hilpert, A. Stukenbrock, & B. Szmrecsanyi (Eds.), Space in language and linguistics: Geographical, interactional and cognitive perspectives (pp. 247275). Berlin, Germany: De Gruyter.[Crossref][Google Scholar], p. 250)

This interactional space is constantly being (re)established and transformed within the activity. The notion of interactional space is intended to contribute both to an interactional conceptualization of space and to a spatial conceptualization of interaction. In her research program, Mondada relates her approach to space to the sequential and temporal organization of talk and embodied action in order to show how interactional space unfolds moment by moment within the coordinated adjustment of various simultaneous streams of action and sets of multimodal resources.”


“Although Lefebvre’s ideas about socially produced spaces were not generated within the discipline of geography, they resemble its accepted definition for place (Tuan, 1977 Tuan, Y. F. (1977). Space and place: The perspective of experience. Minneapolis, MN: University of Minnesota Press. [Google Scholar]). His distinction between space and place draws on their dialectical relations; people tend to think about one in the light of the other: Whereas space is general, place is personal and implies a sense of belonging. Space signals movement, whereas place is a site of stability and immobility.

Space could turn into place as a result of actions that transpire within it in a process of placemaking: “the set of social, political and material processes by which people iteratively create and recreate the experienced geographies in which they live” (Pierce, Martin, & Murphy, 2011 Pierce, J., Martin, D. B., & Murphy, J. T. (2011). Relational place-making: The networked politics of place. Transactions of the Institute of British Geographers, 36(1), 5470. doi:10.1111/j.1475-5661.2010.00411.x[Crossref], [Web of Science ®][Google Scholar], p. 54). Places, then, are sites of history and identity. In order for a place to become a meaningful location, it has to be subject to human relations; it has to absorb a degree of agency, including emotions (Agnew, 1987 Agnew, J. (1987). The United States in world economy. Cambridge, UK: Cambridge University Press. [Google Scholar]). Placemaking actions are manifestations of agency. They are attempts to assert identity or to localize—personalize or socialize—space (Creswell, 2004 Creswell, T. (2004). Space: A short introduction. Cambridge, MA: Blackwell. [Google Scholar]). Respectively, the private and the public, the two pillars of political philosophy, are both places; a great deal of agency is invested in them.

The relation between placemaking and political becoming is mediated through the notion of ownership. Placemaking implies a growing sense of ownership toward the transformed site. Ownership is sensed in two ways: through the iterative actions needed in order to turn space into place and through projecting ownership objects and ownership signifiers, also known as self-directed identity claims (Gosling, Ko, Mannarelli, & Morris, 2002 Gosling, S., Ko, S. J., Mannarelli, T., & Morris, M. E. (2002). A room with a que: Personality judgments based on offices and bedrooms. Journal of Personality and Social Psychology, 82(3), 379398. doi:10.1037/0022-3514.82.3.379[Crossref], [PubMed], [Web of Science ®][Google Scholar]), on space and reclaiming it in this way. For example, with regard to a street, ownership could be sensed by fencing off part of it and putting up a sign with a family’s name, which might even lead to the action-invested place being treated as home. Later in this article, we develop the connection between placemaking and political agency.

This idea of ownership is in close accordance with Aristotle’s notion of having. In his Metaphysics (Delta), Aristotle (1971 Aristotle. (1971). Metaphysics (Books Gamma, Delta and Epsilon). Oxford, UK: Clarendon Press. [Google Scholar]) defined possession as a mediated act (praxis) or movement between the proprietor and the thing. The Greek word for possession is hexis. The word can also be described as a qualification that originates from practice and habituation. The physical dimension of the process of hexis is reflected in the Latin translation of the concept, the habitus, these days so familiarly associated with Bourdieu (1977/2013 Bourdieu, P. (2013). Outline of a theory of practice. Cambridge, UK: Cambridge University Press. (Original work published 1977) [Google Scholar]). The habitus refers not only to the process of acquiring through recurrence, or to the habitual aspect of being accustomed to performing an action, but also to the growing capability, readiness, and ease in performing the act in similar—yet changed—environments. The experience of ownership is then the cumulative outcome of recurring bodily practices of spatial actions. The knowledge produced in the process of having is localized and privatized.

This relation between recursive actions and political development in Aristotle’s ethical philosophy should be emphasized. The hexis, because of its habitual and bodily nature, is the cornerstone of Aristotle’s ethical virtue. Unlike the intellectual, the ethical virtue can be neither appropriated through direct teaching nor developed naturally in man; its development is the outcome of reclusiveness, of habit (ethos): “The only way to have (virtue) is to do right … we become just by doing just acts” (Aristotle, 1999a Aristotle. (1999a). Nicomachean ethics. Retrieved from http://classics.mit.edu/Aristotle/nicomachaen.html [Google Scholar], Book 2, p. 21, emphasis added). Hence the crucial importance of developing good practices at a young age: “It makes no small difference, then, whether we form habits of one kind or of another from our very youth; it makes a very great difference, or rather all the difference” (p. 21).”

“Wherever You Go, You Will Be a Polis”: Spatial Practices and Political Education in Computer-Supported Collaborative Learning Discussions.  Journal of the Learning Sciences Vol. 26 , Iss. 2,2017