Magali Gláucia Fávaro de Oliveira, Elda Bussinguer
Resumo A Organização Mundial da Saúde considera a infertilidade um problema global de saúde a ser enfrentado por meio de procedimentos de reprodução assistida. Diante disso, questiona-se se pessoas inférteis têm sido amparadas pelo Sistema Único de Saúde para a realização da técnica de fertilização in vitro como meio para efetivação de seu direito fundamental ao planejamento familiar. É confirmada a hipótese de que o acesso à fertilização in vitro é dificultoso e limitado, com escassos centros públicos oferecendo tratamento completamente gratuito. Falta de investimentos adequados, escassez de profissionais e longas listas de espera também demonstram o desamparo sofrido por pessoas inférteis. A judicialização, embora tenha sido utilizada em alguns casos, não é uma solução amplamente efetiva, sendo necessário, para garantir a universalidade do acesso, criar políticas públicas abrangentes e incorporar de forma eficiente serviços de reprodução assistida ao Sistema Único de Saúde.
Katherine Simbaña-Rivera, Damary S. Jaramillo-Aguilar, Víctor Hugo Almeida Arteaga
et al.
Abstract Background Ethical regulation of biomedical research is essential to safeguard the rights and well-being of participants. In Ecuador, Research Ethics Committees (RECs) have undergone progressive growth. This study describes and evaluates the performance of the RECs of Ecuador using the first standardized registry of approved research studies implemented by the Ministry of Public Health. Methods An observational, descriptive, and retrospective study was conducted using administrative records corresponding to the first year of implementation of the First Standardized Registry of Approved Research Studies (September 2021–October 2022). All functional RECs and approved research projects were included, characterizing variables related to geographical distribution, institutional affiliation, researcher profiles, study type, review modality, response times, and protocol follow-up. Results A total of 957 projects approved by 21 RECs were evaluated. Of these, 52% were concentrated in Quito, and 62% were affiliated with higher education institutions. Most studies were observational (96%), with a predominance in Medicine and Nursing (63%), followed by Psychology (15%) and Sociology (10%). Geographical distribution revealed a high concentration in Azuay (52%) and Pichincha (43%). Only 3% of the projects had a unique identification code, 40% involved vulnerable populations, and 9% used biological samples. The average waiting time to obtain a resolution was 31 days (95% CI: 28.5–34.2). Conclusions Despite regulatory advancements and the implementation of the First Standardized Registry of Approved Research Studies, challenges persist in terms of decentralization, operational efficiency, and follow-up. Optimizing the regulatory framework, strengthening RECs training, and fostering public-private collaboration are crucial to consolidating a robust and adaptable ethical system capable of addressing emerging challenges.
Mohaddese Hosseinzadeh, Malihe Ram, Alireza Sardashti Birjandi
et al.
Background and Objectives: One of the most important stages of life is the student period, which is associated with various changes. In this study, the relationship between spiritual health and psychological coherence with hope for the future career of medical students of Ferdows Faculty of Medical Sciences was investigated.
Methods: This is a descriptive-analytical study, in which some of the medical students of Ferdows Faculty of Medical Sciences selected by a multi-stage stratified random sampling method were studied. Data were collected using the Qureshi Rad employment hope questionnaire, the psychological coherence questionnaire, and the spiritual health of Polotzin and Ellison (1982). To analyze the data, SPSS software version 16 was used with a significance level of 0.05.
Results: The spiritual health and psychological coherence of the students were found to be average, while their hope for a future career was high. There was a positive and significant relationship between spiritual health and psychological coherence (P<0.05). However, a positive and significant relationship was found between hope for a future career, psychological cohesion, and spiritual health. Also, the psychological cohesion of male and married students was higher than that of single and female students.
Conclusion: Since hope for the future of work in students is of particular importance and has a direct effect on increasing psychological coherence and spiritual health, it is suggested that the families and relevant officials put the necessary training to improve these two important factors in their agenda.
Gustavo Batista Ferro, Carlos Arthur da Silva Morais, Erick Antonio Rodrigues Mendes
et al.
Resumo A reanimação cardiopulmonar é procedimento padrão em situações de parada cardiorrespiratória. No entanto, em pacientes oncológicos com doença em estágio terminal, o benefício da reanimação é questionável, e devem ser evitadas intervenções que prolonguem o sofrimento sem melhorar a qualidade de vida. Contudo, a ausência de consenso global e a falta de legislação específica no Brasil sobre ordens de não reanimação geram insegurança e receio entre os profissionais. Assim, problematizar o tema é crucial para garantir decisões médicas que respeitem a dignidade e as diretrizes éticas da profissão.
Ana Pedrina Freitas Mascarenhas, Ana Carolina Lopes Cavalcanti de Oliveira, Clara Janyelle Gomes de Carvalho
et al.
Diante do cenário da pandemia COVID-19, aumentou a necessidade de atenção às pessoas que vivem em situação de vulnerabilidade, contudo os princípios da bioética, a justiça e a equidade devem fortalecer a proteção à vida, a ética do cuidado por sua vez, seria a base para a implementação de políticas públicas. Este ensaio teórico objetivou analisar os efeitos da pandemia da COVID-19 sobre a população idosa, considerando suas vulnerabilidades sob a perspectiva da bioética. Trata-se de um ensaio teórico, realizado a partir da revisão integrativa da literatura, sobre bioética e vulnerabilidade nas pessoas idosas diante da pandemia COVID-19. Os resultados foram discutidos o panorama da bioética. Espera-se que este ensaio possa contribuir para reflexões sobre essa dura realidade que fere e gera sofrimento a pessoa idosa, pois só através uma nova articulação entre os processos políticos, sociais e civilizatórios, talvez seja possível pensar numa sociedade mais digna e humana.
Medical philosophy. Medical ethics, Business ethics
Luciano Ferrari, Roberta Raffaetà, Lorenzo Beltrame
This article analyses valuation practices, focusing on the way health data constitute different kinds of assets for different actors within an industry-academia partnership in the field of microbiome research. It examines emerging bioeconomic dynamics within data-driven computational biology, contributing to debates about the sociopolitical implications of multiple and synergic valuation practices in personalized medicine for future public health. Through the ethnographic exploration of a personalized nutrition startup active in Europe and the US and a metagenomics research lab based in Italy, we explore the dynamics around the intersection of knowledge production with scientific, economic, and health value. In contrast to traditional commodity and rent-based structures, we expose a hybrid model of bioeconomic enterprise that challenges rigid distinctions between commodification and asset-based rentiership, highlighting synergic business models where multiple registers of the value of worth are played out, translated, and combined. The study unveils a nuanced relationship between data, research, and economic drivers, where scientists perceive they can pursue research independently from market pressures. Beyond these perceptions and narratives, we highlight the economic dynamics that suture basic research and industry in their promotion of health governance that causes social justice concerns by restricting access to high income and hegemonic types of clients/patients. We clarify that epistemic aspects cannot be disentangled from sociopolitical aspects, especially in the digital age, and that where governments implement and enhance digital health solutions, they also need to plan for consistent social (re)adjustments.
Abstract In 1989, Thomas Donaldson requested the California courts to allow physicians to hasten his death. Donaldson had been diagnosed with brain cancer, and he desired to die in order to cryonically preserve his brain, so as to stop its further deterioration. This case elicits an important question: is this a case of euthanasia? In this article, we examine the traditional criteria of death, and contrast it with the information-theoretic criterion. If this criterion is accepted, we posit that Donaldson’s case would have been cryocide, but not euthanasia. We then examine if cryocide is an ethically feasible alternative to euthanasia. To do so, we rely on the ethical doctrine of double effect.
The article examines the issue of public health and medical services in Algeria and analyses the role of the public and private sectors in supporting and promoting public health. Our study is based on an analysis of legal texts that highlight Algeria’s health policies. Some significant aspects of the article are: the Algerian policy of opening health services up to private investment; the lack of contribution of private health institutions in the field of medical education; and issues surrounding the organisation of blood donation. The article also notes the absence of foreign investment in Algerian hospitals.
Lariane Marques Pereira, Sonia Maria Oliveira de Andrade, Melina Raquel Theobald
Resumo Esta revisão de literatura objetivou analisar a produção acerca dos cuidados paliativos e da formação de profissionais da saúde durante a graduação. Foi realizada revisão integrativa de literatura na base Periódicos Capes, com os descritores “cuidados paliativos” e “ensino”, apenas em português, dos últimos cinco anos. Dos 61 artigos encontrados, após filtros e leitura de título e resumo, foram selecionados dez. Constatou-se que as grades curriculares da maioria dos cursos de saúde não incluem o ensino dos cuidados paliativos, ocasionando despreparo teórico, prático e psicológico. Evidenciou-se o papel fundamental que a filosofia e a bioética têm na formação dos profissionais de saúde, como indutoras de condutas profissionais mais éticas, adequadas e humanas. A dinâmica teoria-prática foi a mais sugerida como forma de inserir adequadamente os cuidados paliativos no processo de formação dos cursos de saúde.
Cinzia Colombo, Michaela Th. Mayrhofer, Christine Kubiak
et al.
Abstract Background Informed consent forms for clinical research are several and variable at international, national and local levels. According to the literature, they are often unclear and poorly understood by participants. Within the H2020 project CORBEL—Coordinated Research Infrastructures Building Enduring Life-science Services—clinical researchers, researchers in ethical, social, and legal issues, experts in planning and management of clinical studies, clinicians, researchers in citizen involvement and public engagement worked together to provide a minimum set of requirements for informed consent in clinical studies. Methods The template was based on a literature review including systematic reviews and guidelines searched on PubMed, Embase, Cochrane Library, NICE, SIGN, GIN, and Clearinghouse databases, and on comparison of templates gathered through an extensive search on the websites of research institutes, national and international agencies, and international initiatives. We discussed the draft versions step-by-step and then we referred to it as the “matrix” to underline its modular character and indicate that it allows adaptation to the context in which it will be used. The matrix was revised by representatives of two international patient groups. Results The matrix covers the process of ensuring that the appropriate information, context and setting are provided so that the participant can give truly informed consent. It addresses the key topics and proposes wording on how to clarify the meaning of placebo and of non-inferiority studies, the importance of individual participants’ data sharing, and the impossibility of knowing in advance how the data might be used in future studies. Finally, it presents general suggestions on wording, format, and length of the information sheet. Conclusions The matrix underlines the importance of improving the process of communication, its proper conditions (space, time, setting), and addresses the participants’ lack of knowledge on how clinical research is conducted. It can be easily applied to a specific setting and could be a useful tool to identify the appropriate informed consent format for any study. The matrix is mainly intended to support multicentre interventional randomized clinical studies, but several suggestions also apply to non-interventional research.
Marie Gaille, Marco Araneda, Clément Dubost
et al.
Abstract Background The discovery of biomarkers of ageing has led to the development of predictors of impending natural death and has paved the way for personalised estimation of the risk of death in the general population. This study intends to identify the ethical resources available to approach the idea of a long-lasting dying process and consider the perspective of death prediction. The reflection on human mortality is necessary but not sufficient to face this issue. Knowledge about death anticipation in clinical contexts allows for a better understanding of it. Still, the very notion of prediction and its implications must be clarified. This study outlines in a prospective way issues that call for further investigation in the various fields concerned: ethical, psychological, medical and social. Methods The study is based on an interdisciplinary approach, a combination of philosophy, clinical psychology, medicine, demography, biology and actuarial science. Results The present study proposes an understanding of death prediction based on its distinction with the relationship to human mortality and death anticipation, and on the analogy with the implications of genetic testing performed in pre-symptomatic stages of a disease. It leads to the identification of a multi-layered issue, including the individual and personal relationship to death prediction, the potential medical uses of biomarkers of ageing, the social and economic implications of the latter, especially in regard to the way longevity risk is perceived. Conclusions The present study work strives to propose a first sketch of what the implications of death prediction as such could be - from an individual, medical and social point of view. Both with anti-ageing medicine and the transhumanist quest for immortality, research on biomarkers of ageing brings back to the forefront crucial ethical matters: should we, as human beings, keep ignoring certain things, primarily the moment of our death, be it an estimation of it? If such knowledge was available, who should be informed about it and how such information should be given? Is it a knowledge that could be socially shared?
Cualquier acto médico presenta siempre una doble vertiente, técnica y moral. La bioética, surge como herramienta clave para poder conjugar ambos aspectos en la toma diaria de decisiones médicas. Además, docencia y aprendizaje estarán presentes de forma patente durante toda la vida profesional de la mayoría de los médicos. En la actualidad, los avances obtenidos por la comunidad universitaria en cuanto a la docencia de la bioética son notables. No han sido tan claro, sin embargo, para la formación durante la residencia ni tras la especialidad. El contexto de la Medicina Intensiva, dedicada a pacientes con enfermedades críticas, ofrece una serie de particularidades que pueden ser beneficiosas para el aprendizaje de muchos aspectos bioéticos. Estos incluyen, entre otros, el respeto a la autonomía del paciente, la búsqueda de la beneficencia, incluso durante los cuidados al final de la vida, o la toma de decisiones en equipo o en situaciones de extrema urgencia. En cuanto al modo de enseñanza de la bioética existen diferentes aproximaciones, desde la clásica clase magistral a la clase invertida o el método del caso, que tiene su mayor exponente en la simulación. Nuestra propuesta particular consiste en la integración de la práctica y la discusión en grupo como elemento fundamental de la enseñanza de la bioética, ayudada de las metodologías más recientes, fundamentalmente, de la simulación. Cualquier acto médico presenta siempre una doble vertiente, técnica y moral. La bioética, surge como herramienta clave para poder conjugar ambos aspectos en la toma diaria de decisiones médicas. Además, docencia y aprendizaje estarán presentes de forma patente durante toda la vida profesional de la mayoría de los médicos. En la actualidad, los avances obtenidos por la comunidad universitaria en cuanto a la docencia de la bioética son notables. No han sido tan claro, sin embargo, para la formación durante la residencia ni tras la especialidad.El contexto de la Medicina Intensiva, dedicada a pacientes con enfermedades críticas, ofrece una serie de particularidades que pueden ser beneficiosas para el aprendizaje de muchos aspectos bioéticos. Estos incluyen, entre otros, el respeto a la autonomía del paciente, la búsqueda de la beneficencia, incluso durante los cuidados al final de la vida, o la toma de decisiones en equipo o en situaciones de extrema urgencia.
En cuanto al modo de enseñanza de la bioética existen diferentes aproximaciones, desde la clásica clase magistral a la clase invertida o el método del caso, que tiene su mayor exponente en la simulación.
Nuestra propuesta particular consiste en la integración de la práctica y la discusión en grupo como elemento fundamental de la enseñanza de la bioética, ayudada de las metodologías más recientes, fundamentalmente, de la simulación.
Jurisprudence. Philosophy and theory of law, Medical philosophy. Medical ethics
From the year 2000, on a class of biological drugs, the anti-VEGF proved to be quite effective in the treatment of retinal diseases, which have in its pathophysiological mechanism an important vascular proliferation component that can lead to blindness. Two of these drugs, bevacizumab and ranibizumab, are quite similar and have the same efficacy and safety. They were developed by the same laboratory and are commercialized by two major pharmaceutical companies through an agreement made between them. However, there is a big difference in the price of the drugs. The aim of this article is to present the Bioethics of intervention as grounds for choosing the cheaper drug, even if forced to do so by regulatory entities.
Medical philosophy. Medical ethics, Business ethics