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- Between scientists and public: reframing public participation in science through bioethicsPublication . Carvalho, Mónica; Carvalho, Ana Sofia; Araújo, Joana; Brites, MartaDiscourses and techniques about the relationship between science and the public have remarkably developed in the past four decades. Science communication has become an important issue for the scientific governance. Public confidence in science, decision-making and support to democracy have changed the predominance of a top-down communication model, from scientists to public, to a more participative one – the Public Engagement with Science (PES). The Institute of Bioethics at Portuguese Catholic University, in Oporto, is doing research in the role of science in society issues and the aim of this paper is to discuss the relevance of Bioethics to improve PES. The bioethical issues seem to draw people‟s attention to certain scientific facts, confronting them with the consequences of science and improving their skills in deliberating on scientific issues. Moreover, ethics influences the way one understands public engagement, „scientific citizenship‟ or „science governance‟. The role of ethics is not to re-edit the old fashionable deficit perspective which usually focuses on the impact of science and technology from the perspective of non-experts. Ethics is a theoretical and practical reference for changing the science-making in the near future, and it makes us consider the public as playing a more important role than that of mere spectators with lack of scientific knowledge or with emotional concerns. The ethical reflection could redefine the non-experts place in the context of science, involving people with science, making them not simply aware of scientific issues but also involved in the process of decision-making. On the other hand, bioethics can also contribute to the participation of scientists in the ethical reflection that takes place outside the labs, broadening their role as citizen scientists.
- O papel da educação na responsabilidade socialPublication . Araújo, JoanaO ser humano realiza o seu projecto de vida no seio da dimensão ética e se a ética se constitui como o modo próprio de ser dos seres humanos, significa que toda a actividade humana se delineia no cruzamento da liberdade e da responsabilidade e, assim, se torna necessário um momento de reflexão, de justificação e procura de referências que permitam uma orientação num mundo em perpétuo movimento. Aqui se enraíza o cerne da Educação. A esta cabe, como fim essencial, o pleno desenvolvimento da Pessoa, seja qual for a circunstância em que se encontre. A ética da responsabilidade dá a conhecer o desenvolvimento humano sustentável numa perspectiva de mudança colectiva, na nova importância atribuída ao envolvimento pessoal, na tomada de consciência, numa abertura para o futuro, alicerçada num esforço de conciliação entre os valores e os interesses, entre os direitos e os deveres de cada um.
- Eutanásia e distanásia: clarificação de conceitos em tempo de COVID-19Publication . Gomes, Carlos Costa; Araújo, JoanaRetomar as referências essenciais da ética sobre o que é a eutanásia e a distanásia em tempo de COVID-19, quando a Assembleia da República se prepara para fazer aprovar a legalização da eutanásia; clarificar o que se entende pela expressão “dignidade da morte” ou de “humanização do processo de morrer”, são aspetos importantes que, sem demora, devemos ter em atenção. Se pela eutanásia o homem afirma o seu poder sobre a morte, ao eliminar a pessoas, pela distanásia a homem afirma o seu poder terapêutico obstinado, retadando o fim da vida a todo o custo. É possível, contrariamente à eutanásia e à distanásia, um outro curso de ação: os cuidados de acompanhamento-paliativos que, como prática médica e de enfermagem, são sensíveis ao processo de humanização do morrer ou ao processo de morrer com dignidade e não incorrem na obstinação terapêutica nem no abrebiar ou acelerar a morte. Estes cuidados acompanham e assistem a pessoa doente até ao fim da vida.
- Toward a bioethical framework for antibiotic use, antimicrobial resistance and for empirically designing ethically robust strategies to protect human health: a research protocolPublication . Hernández-Marrero, Pablo; Pereira, Sandra Martins; Brandão, Patrícia Joana de Sá; Araújo, Joana; Carvalho, Ana SofiaIntroduction: Antimicrobial resistance (AMR) is a challenging global and public health issue, raising bioethical challenges, considerations and strategies. Objectives: This research protocol presents a conceptual model leading to formulating an empirically based bioethics framework for antibiotic use, AMR and designing ethically robust strategies to protect human health. Methods: Mixed methods research will be used and operationalized into five substudies. The bioethical framework will encompass and integrate two theoretical models: global bioethics and ethical decision-making. Results: Being a study protocol, this article reports on planned and ongoing research. Conclusions: Based on data collection, future findings and using a comprehensive, integrative, evidence-based approach, a step-by-step bioethical framework will be developed for (i) responsible use of antibiotics in healthcare and (ii) design of strategies to decrease AMR. This will entail the analysis and interpretation of approaches from several bioethical theories, including deontological and consequentialist approaches, and the implications of uncertainty to these approaches.
- Ethical decision making in pain management: a conceptual frameworkPublication . Carvalho, A. S.; Martins Pereira, S.; Jácomo, A.; Magalhães, S.; Araújo, Joana; Hernández-Marrero, P.; Gomes, Carlos Costa; Schatman, M. E.Introduction: The practice and study of pain management pose myriad ethical challenges. There is a consensual opinion that adequate management of pain is a medical obligation rooted in classical Greek practice. However, there is evidence that patients often suffer from uncontrolled and unnecessary pain. This is inconsistent with the leges artis, and its practical implications merit a bioethical analysis. Several factors have been identified as causes of uncontrolled and unnecessary pain, which deprive patients from receiving appropriate treatments that theoretically they have the right to access. Important factors include (with considerable regional, financial, and cultural differences) the following: 1) failure to identify pain as a priority in patient care; 2) failure to establish an adequate physician–patient relationship; 3) insufficient knowledge regarding adequate prescription of analgesics; 4) conflicting notions associated with druginduced risk of tolerance and fear of addiction; 5) concerns regarding “last-ditch” treatments of severe pain; and 6) failure to be accountable and equitable. Objective: The aim of this article was to establish that bioethics can serve as a framework for addressing these challenging issues and, from theoretical to practical approaches, bioethical reflection can contextualize the problem of unrelieved pain. Methods: This article is organized into three parts. First, we illustrate that pain management and its undertreatment are indeed ethical issues. The second part describes possible ethical frameworks that can be combined and integrated to better define the ethical issues in pain management. Finally, we discuss possible directions forward to improve ethical decision making in pain management. Discussion: We argue that 1) the treatment of pain is an ethical obligation, 2) health science schools, especially medical training institutions, have the duty to teach pain management in a comprehensive fashion, and 3) regulatory measures, which prevent patients from access to opioid treatment as indicated in their cases, are unethical and should be reconsidered. Conclusion: Developing an ethical framework for pain management will result in enhanced quality of care, linking the epistemic domains of pain management to their anthropological foundations, thereby making them ethically sound.
- Teaching bioethics in high schoolsPublication . Araújo, Joana; Gomes, Carlos Costa; Jácomo, António; Pereira, Sandra MartinsObjective: The Bioethics Teaching in Secondary Education (Project BEST) aims to promote the teaching of bioethics in secondary schools. This paper describes the development and implementation of the programme in Portugal. Design: Programme development involved two main tasks: (1) using the learning tools previously developed by the US Northwest Association of Biomedical Research and the Council of Europe and (2) applying the project in classrooms, conducting lectures on bioethics for students and teachers, and then using the previously developed learning tools. Setting: 32 schools representing the most densely populated regions of Portugal. Methods: Two surveys, based on previously validated measures, were used to evaluate the project. Results: The surveys were answered by the 179 students and 16 teachers attending a conference held by the project, which concluded the project's implementation phase. The findings point to the positive impact of this project. Conclusion: Based on evidence collected to date, it is clear that (1) students can develop reflective skills using this kind of an approach, (2) the project is well suited to secondary school syllabuses and to the age range of students from secondary schools, and (3) the teaching of values should start earlier at school, thereby helping young people develop a critical perspective on problems linked to scientific development and its implications on human health.
- Bioética no ensino secundário: estratégias e instrumentos nas ciências da vidaPublication . Araújo, JoanaA Bioética enfrenta frequentemente situações problemáticas, pela sua complexidade, e dilemáticas, pela necessidade de se decidir um curso de acção. O principal objectivo do projecto que pretendemos apresentar nesta comunicação, Projecto BEST – bioética no ensino secundário - estratégias e instrumentos na formação ética nas ciências da vida e do meio é promover o ensino da bioética no ensino secundário. Trata-se de um projecto de investigação que foi aplicado ao longo de três anos em diversas escolas no ensino secundário, divididas pelo território nacional, com o objectivo de testar estratégias e instrumentos facilitadores do ensino da bioética.
- Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagersPublication . Pereira, Sandra Martins; Araújo, Joana; Hernández-Marrero, PabloBackground: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants. Methods: An action-research study was conducted at a local community parish in Portugal in November 2015. An education programme was purposively built about palliative care, using active educational strategies adapted for teenagers. Quantitative and qualitative techniques and instruments were used for data collection: questionnaire; reflective diaries; interviews and written testimony. The program had three stages: preparation; intervention; and evaluation. Qualitative data were analysed using thematic content analysis; quantitative data were analysed descriptively. Results: 69 people (47 teenagers) participated in the education program. Findings show that the education program contributed to creating awareness about palliative care. Both the teenagers and other participants assessed the education program positively. At the end of the program, teenagers had a constructive message about palliative care. Conclusions: The education-intervention contributed to create awareness about palliative care among the participant teenagers, who ended the program with a positive message about palliative care. Based on our findings, the following policy implications can be drawn: (1) Further research is needed to evaluate the effect of education programs about palliative care among younger age groups (teenagers and children), particularly in relation to the changing of attitudes toward palliative care. (2) Education about palliative care should be promoted to local communities, involving all age groups, to foster involvement, participation and empowerment. (3) Compassionate communities should be promoted to enhance the health and wellbeing of all citizens at the end of their life.
- A educação do olhar: uma resposta à crise ambientalPublication . Araújo, Joana; Magalhães, SusanaDiariamente, somos confrontados com uma crise ambiental de dimensão planetária. Sabemos que as razões dessa crise são várias, mas também sabemos que no cerne desse problema está a acção humana e os valores que a orientam, o que exige uma resposta ao nível da reflexão ética orientada para o agir. Trata-se, portanto, de um desafio ao nível da alteração dos padrões de comportamento, que passa pela institucionalização de uma lógica de prudência. Se, por um lado, a pressão da complexidade dos acontecimentos, a urgência e a vasta amplitude do problema ecológico nos levam a retrair perante a necessidade de mudança, por outro lado é necessário que o homem sinta essa necessidade de mudança como uma exigência de toda a humanidade. Com este trabalho, pretendemos reflectir sobre a importância da educação para a percepção da crise ambiental e para a compreensão do novo paradigma da ciência pós-moderna, no qual se inscreve um novo modo de agir, que é essencial na procura de soluções para essa crise global que ameaça as gerações presentes e futuras.
- O papel da bioética na educação para os valoresPublication . Araújo, JoanaA Bioética enfrenta, frequentemente, situações problemáticas pela sua complexidade e, simultaneamente, dilemáticas pela necessidade de se decidir um curso de acção. A humanidade tem ânsia de valores éticos e morais e a educação tem um papel fundamental no despertar para um pensamento crítico onde se incluem estes valores morais. O principal objectivo deste trabalho é promover o ensino dos valores através da bioética no secundário, dado que entendemos que a transmissão de valores, no mundo actual, só poderá ser efectiva através do desenvolvimento das capacidades reflexivas dos jovens. Pretendemos, deste modo, desenvolver o método mais útil para a resolução de casos, capaz de dar respostas justificáveis para um determinado público, sendo que, por justificável, entendemos o melhor caminho a percorrer, dada a ausência de uma teoria moral universalmente aceite.