Sociedades científicas publicam guidelines éticas, face a pandemia COVID-19 – Itália e Espanha

O Italian College of Anesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI) publicou guidelines dos critérios que devem ser seguidos em circunstâncias extraordinárias.

Decisioni eticamente fondate per il trattamento dei pazienti affetti da insufficienza respiratoria grave secondaria a infezione da COVID-19

Il Documento in questione – Decisioni eticamente fondate per il trattamento dei pazienti affetti da insufficienza respiratoria grave secondaria a infezione da Covid-19 – riprende, conferma e divulga le nostre Raccomandazioni di etica clinica per l’ammissione a trattamenti intensivi e per la loro sospensione, in condizioni eccezionali di squilibrio tra necessità e risorse disponibili.

 The document begins by likening the moral choices Italian doctors may face to the forms of wartime triage that are required in the field of “catastrophe medicine.” Instead of providing intensive care to all patients who need it, the authors suggest, it may become necessary to follow “the most widely shared criteria regarding distributive justice and the appropriate allocation of limited health resources.” The principle they settle upon is utilitarian. “Informed by the principle of maximizing benefits for the largest number,” they suggest that “the allocation criteria need to guarantee that those patients with the highest chance of therapeutic success will retain access to intensive care.” The authors, who are medical doctors, then deduce a set of concrete recommendations for how to manage these impossible choices, including this: “It may become necessary to establish an age limit for access to intensive care.” Those who are too old to have a high likelihood of recovery, or who have too low a number of “life-years” left even if they should survive, would be left to die. This sounds cruel, but the alternative, the document argues, is no better. “In case of a total saturation of resources, maintaining the criterion of ‘first come, first served’ would amount to a decision to exclude late-arriving patients from access to intensive care.” In addition to age, doctors and nurses are also advised to take a patient’s overall state of health into account: “The presence of comorbidities needs to be carefully evaluated.” This is in part because early studies of the virus seem to suggest that patients with serious preexisting health conditions are significantly more likely to die. But it is also because patients in a worse state of overall health could require a greater share of scarce resources to survive: “What might be a relatively short treatment course in healthier people could be longer and more resource-consuming in the case of older or more fragile patients.” (The Atlantic)

Em Espanha, a Sociedad Española de Medicina Intensiva, Crítica y Unidades Coronarias (SEMICYUC) publicou recomendações

RECOMENDACIONES ÉTICAS PARA LA TOMADE DECISIONES EN LA SITUACIÓN EXCEPCIONAL DE CRISIS POR PANDEMIA COVID-19 EN LAS UNIDADES DECUIDADOS INTENSIVOS.(SEMICYUC)

Los objetivos principales de estas recomendaciones, en conclusión, son: 1-Apoyar a los profesionales en la toma de decisiones difíciles, facilitando criterios colegiados que permitan compartir la responsabilidad en situaciones que implican una gran carga emocional. 2-. Explicitar unos criterios de idoneidad de asignación de recursosen una situación de excepcionalidad y escasez.

Ante situaciones de crisis como la que vive España con la enfermedad Covid-19 y en un contexto de recursos limitados, las personas con más posibilidades de sobrevivir deben tener prioridad para ser ingresadas en las unidades de cuidados intensivos (UCI). «Admitir un ingreso puede implicar denegar otro a otra persona que puede beneficiarse más, de forma que hay que evitar el criterio primero en llegar, primero en ingresar».

Así reza literalmente el documento de recomendaciones UCI y Covid-19 que ha elaborado el Grupo de Trabajo de Bioética de la Sociedad Española de Medicina Intensiva, Crítica y Unidades Coronarias (Semicyuc) y cuyo contenido han consensuado con la Sociedad Española de Medicina Interna (SEMI). En suma, las sociedades médicas que representan a internistas e intensivistas, dos de los especialistas que están en primera línea de combate en la lucha contra la infección.

La limitación de recursos en una situación de pandemia como la actual obliga, según intensivistas e internistas, a «consensuar una serie de criterios técnicos y éticos comunes», y el primero que plantean es que el ingreso en UCI se base en «maximizar el beneficio común. Ante pacientes críticos con patologías críticas diferentes de la infección por Covid-19, se debe valorar ingresar prioritariamente al que más se beneficie». (El Mundo)

Solidarity and care as relational practices, Bruce Jennings

“Work in the fields of bioethics and public health ethics over several decades has been theoretically diverse, but particular styles of theorizing, let alone individual theories, do have distinctive philosophical assumptions and discursive characteristics. (…)

Relational bioethics is a conceptually dynamic and rather eclectic field today, frequently drawing on paradigm‐shifting work in moral and political philosophy and on conceptual innovations ongoing in the humanities and the social sciences, including feminist theories, critical theories of various kinds, and orientations informed by philosophical pragmatism and hermeneutics, among others. Inspired by several cognate modes of critical discourse, relational theorizing has turned away from both methodological and ethical individualism. Often, it is more concerned with diachronic (streaming over time) social practices than with synchronic (snapshot in time) individual acts. It favors what Margaret Urban Walker has called the ‘expressive–collaborative’ model of morality over the ‘theoretical–juridical’ model. It strives to place the agency of individuals within a constitutive
context of meaning and interdependence. This context includes both dyadic and small group transactions among persons in direct contact and social, structural interdependencies growing out of institutionalized forms of power. Relational theorizing is a space of historical and cultural embeddedness and embodied living in the natural, material world. (…)

The practice of solidarity begins with the latent possibilities of a given place at a given time. It builds on senses of historical memory and tradition, and it feeds on the gratitude felt when one remembers the service and contributions that others have made to one’s way of life in the past, or when one has the moral imagination to foresee the contributions that newcomers can make in the future. Solidarity begins with the recognition of reciprocal and symbiotic interdependence among members of a moral community and then intervenes in—interrupts—an ongoing community when it is unjustly exclusionary and refuses to recognize the moral standing of some within it.
Solidarity inherently leads us to view our own lives and agency as bound together with the rights, well‐being, health, and dignity of others here and now.

(…)

Like solidarity, care is grounded in the gratitude felt when one recognizes the service and contributions that others have made to one’s
way of life. And like the practice of solidarity, the practice of care interrupts an ongoing form of life in order to be present with another in the face of their need, vulnerability, and suffering, finally winning through to a life well lived. Solidarity and care can arise developmentally out of an engagement with the vocation of repairing a needful, vulnerable, responsive world.”

Jennings B. Solidarity and care as relational practices. Bioethics. 2018;32:553–561.
https://doi.org/10.1111/bioe.12510

German Ethics Council on possible interventions in the genome of human embryos or germ cells

Last year, the birth of the first genetically modified babies shook the world. The German Ethics Council now presents a comprehensive ethical investigation into possible interventions in the genome of human embryos or germ cells. The Council does not deem the human germline to be inviolable. It does, however, consider germline interventions to be ethically irresponsible at the present time because of the associated incalculable risks. The Council, therefore, calls for an application moratorium and recommends that the Federal Government and the Bundestag work towards a binding international agreement.

A prerequisite for any future application of germline interventions would be their adequate safety and efficacy as well as the establishment of appropriate oversight procedures and accompanying governance structures. To this end, the German Ethics Council unanimously renews its call for a broad national and international discourse on the subject. It also recommends the establishment of an international institution that should develop standards for germline interventions in humans and address their medical and social implications.

The German Ethics Council also states that any appropriate assessment of germline interventions must go beyond a mere risk-benefit analysis and consider the following ethical concepts: human dignity, protection of life and integrity, freedom, non-maleficence and beneficence, naturalness, justice, solidarity and responsibility.

In its Opinion, the Ethics Council applies these concepts to different areas where germline interventions might be used. These include the research process that must precede any clinical application, interventions to avoid serious monogenic hereditary diseases, interventions to reduce multifactorial disease risks, and the targeted improvement of human characteristics and abilities (enhancement).

Despite the consensus on the current need for political action, different positions exist with regard to some of these issues – within the German Ethics Council, too. For example, whilst all members agree that the human germline is not inviolable, not everyone agrees that germline interventions should be pursued. A large majority sees the further development and use of the technology as a legitimate ethical goal when aimed at avoiding or reducing genetically determined disease risks. For a few members, however, germline interventions do not offer sufficiently high-ranking benefits that could justify their potential disadvantages.

In order to render the essential questions, arguments and positions transparent and accessible for public and international discourse, the German Ethics Council has summarised them in a novel analytical toolkit. Possible decision pathways and their consequences are visualised in a decision tree.

site Ethikrat

Modificação genética em embriões humanos – posição do CNECV

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Na passada semana, dia 26, foi notícia que um cientista chinês “disse que alterou os embriões durante os tratamentos de fertilidade de sete casais, tendo resultado numa gravidez até agora. Jiankui afirmou que o objetivo não é curar ou prevenir uma doença hereditária, mas tentar criar uma capacidade de resistência a uma possível infeção futura de VIH-Sida. O cientista adiantou que os pais envolvidos não quiseram ser identificados ou entrevistados e não disse onde estes moram ou onde o trabalho foi realizado. Não há confirmação independente da reivindicação de He Jiankui, que tão pouco foi publicada ou examinada por outros especialistas.”

O Conselho Nacional de Ética para as Ciências da Vida anunciou a sua posição, nos termos seguintes:

O anúncio feito pelo investigador He Jiankui da Universidade de Shanzen-China, sobre a realização “com sucesso” de uma modificação genética efetuada em embriões humanos, com recurso à técnica de “edição de genoma” designada por CRISPR-cas9, leva o Conselho Nacional de Ética para as Ciências da Vida a tornar pública a sua veemente condenação. Embora não existindo prova científica suficiente e fiável de que o anúncio feito pelo investigador corresponda à efetiva concretização do que afirma ter sido realizado, a gravidade do propósito levou a comunidade científica internacional, através de instituições idóneas e respeitadas, a condenar os “resultados científicos” e a essa condenação associa-se o Conselho Nacional de Ética para as Ciências da Vida.
A situação reportada é tecnicamente imprudente, tem graves insuficiências de fundamentação científica, configura uma situação moralmente irresponsável e eticamente inaceitável, nomeadamente por implicar riscos reais imprevisíveis e potencialmente irreversíveis para as duas crianças nascidas após manipulação do genoma através da utilização da técnica mencionada.
Novas tecnologias direcionadas à modificação do genoma humano com o propósito de evitar doenças e malformações transmitidas devem ser encaradas com extrema prudência na fase atual do conhecimento científico, requerendo-se que sejam sustentadas em evidência científica suficientemente validada, recorrendo-se ao princípio da precaução, por forma a acautelar efeitos secundários deletérios e irreversíveis sobre as gerações presentes e futuras.
Assim, o Conselho Nacional de Ética para as Ciências da Vida entende que, apesar deste tipo de manipulações do genoma humano se encontrar proibido nos países que subscreveram em 2010 a Convenção dos Direitos do Homem e da Biomedicina do Conselho da Europa, entre os quais Portugal, deve reforçar-se a necessidade de se desenvolverem esforços adicionais de regulação científica e bioética, a nível internacional, que permitam salvaguardar situações similares futuras.
O Conselho Nacional de Ética para as Ciências da Vida, na sua missão de análise atenta dos problemas éticos suscitados pelos progressos científicos nos domínios das novas tecnologias, continuará a acompanhar e a desenvolver a reflexão sobre as aplicações potenciais destas e outras tecnologias e a expressar sobre elas a sua posição no melhor interesse dos cidadãos e do progresso científico e tecnológico que beneficie a humanidade.

Ética aplicada – Saúde, Almedina, 2018

Os cuidados de saúde estão ancestral e indissociavelmente ligados a preocupações de ordem ética, numa relação que se tem vindo a intensificar, devido ao crescente poder de intervenção da medicina, e a ampliar, devido, à crescente intervenção do paciente na gestão da sua saúde e nas decisões na doença.
O presente volume começa por perspectivar o contexto actual da prestação de cuidados de saúde, sublinhando as novas questões éticas que suscita. Na segunda parte identifica os principais problemas éticos que se colocam ao longo do ciclo da vida humana, quer na sua especificidade a determinados grupos etários, quer na sua transversalidade ao percurso vital, revestindo-se de características próprias decorrentes das circunstâncias particulares em que ocorrem.


Índice

O paciente como pessoa

Maria do Céu Patrão Neves e Jorge Soares. . . . . . . . . . . . . . 9

I – TEMAS FUNDAMENTAIS

A humanização em saúde

Filipe Almeida. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .31

Da prática clínica ao papel social da medicina

Luís Duarte Madeira e Susana Raposo Alves. . . . . . . . . . . . 61

Relações interpessoais e institucionais na prática clínica

António Sarmento . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85

Ética e prioridades em saúde

António Correia de Campos . . . . . . . . . . . . . . . . . . . . . . . . . . 99

A iniciativa dos cidadãos e patient advocacy

Carlos Freire de Oliveira e Miguel Pina . . . . . . . . . . . . . . . . 127

II – DESAFIOS ÉTICOS AO LONGO DO CICLO DA VIDA

Fecundação, gestação e procriação medicamente assistida

Miguel Oliveira da Silva . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151

Nascimento e infância

Maria do Céu Machado . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . 173

Adolescência

Helena Fonseca . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191

Vida adulta e prevenção da doença

Jorge Torgal. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 211

Vida adulta e previsão da doença

Fernando J. Regateiro . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227

Vida adulta e doença crónica

Luís Campos. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. .  251

Doença e vulnerabilidades

Jorge Costa Santos . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 285

Saúde e inclusão

Vítor Feytor Pinto. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 309

O processo de envelhecimento

António Leuschner . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 329

O processo de morte: directivas antecipadas de vontade e outras questões do fim de vida

Lucília Nunes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . .355

Lists of ethical , legal, societal and economic issues of big data technologies

Sem dúvida, uma leitura que se recomenda….
Executive Summary
The main aim of this document is to identify and analyse the most relevant ethical, legal, societal and economic issues implicated by the development of big data technologies. With this purpose in mind, each distinctive perspective approaches the technological innovation brought about by big data technologies from a different angle.
First, the ethical perspective contains a comprehensive review of different ethical outlooks: moral philosophy, philosophy of technology and biomedical ethics which provide the guidelines for developing a list of values that are useful to shape an ethical perspective on big data technologies for all stakeholders. The ethical issues mapped
particularly concern these values to the extent they are under pressure by the developments in big data technologies. The selection was primarily guided by the views on technology development from a virtue ethics perspective. The ethical issues identified are: human welfare, autonomy, non-maleficence, justice (including equality, non-discrimination, digital inclusion), accountability (including transparency), trustworthiness (including honesty and underpinning also security), privacy, dignity, solidarity and environmental welfare.
Second, the legal perspective focuses on the lists of human rights derived from the European Convention on Human Rights (ECHR) and the EU Charter of Fundamental Rights (the EU Charter), which together constitute the main legal framework for the EU in the field of human rights.
The rights of particular relevance in the context of big data technologies are the rights to private and family life, personal data protection, freedom of expression and information, freedom of assembly and association, non-discrimination, fair trial and consumer protection. By analysing the normative scope of each of these human rights, looking at both legislation and case law of the
European courts and the way in which big data technologies challenge different aspects of each human right at stake, the legal part distils the list of the most relevant issues at the nexus of big data technologies and human rights in the EU.
The legal issues identified are: lack of transparency, vagueness of the concept of harm, accountability, proportionality, establishing a regulatory framework and the role of private actors in applying fundamental rights.
Third, the societal perspective makes use of the extensive literature on Societal Impact Assessments (SIA). The analysis of literature was combined with a review of research project propositions and complemented by discussions at two workshops. Societal impact is very generally understood as changes to one or more of
a number of elements of social life: people’s way of life, their culture, their community, their political systems, their environment, their health and well-being, their personal and property and their fears and aspirations.
The societal issues are mapped by examining different actors and distinctions between these actors, by examining the relationship between data subjects and data controllers and processors, and by examining the risk and impact of potential abuses of big data technologies. On top of the SIA approach, a survey of literature on societal issues in the context of big data technologies identified data culture, data quality, analytics methodology and visualisation as related aspects, essential to understand societal issues and to develop means to address them.
The societal issues identified are: unequal access, normalisation, discrimination, dependency, intrusiveness, non-transparency and abusiveness.
Fourth, the economic perspective mainly builds on the societal perspective, as the societal perspective already includes business-to-business and business-to-consumer relations. Societal issues may affect community capital, which may include human capital, social capital, political capital and cultural capital.
Natural and physical capital are outside the scope of this deliverable. Due to this close relationship between the societal and the economic perspective, many of the societal issues also include economic aspects and, as such, societal and economic issues cannot always be clearly distinguished. Therefore, the starting point for listing the economic issues are the societal issues derived from the SIA analysis, with an emphasis on economic aspects.
There are no economic issues that are not societal issues at the same time.
The economic issues iden tified are: unequal access (including the shortage of a skilled workforce and the creation of a new digital divide), normalisation, discrimination, dependency, intrusiveness, non-transparency and abusiveness.
Observing the four lists of issues identified, the following conclusions can be drawn:
• Although there is some overlap in issues from the different perspectives, this does not mean that the overlapping issues are the same from each perspective – each perspective simply shows different aspects of each issue.
• The list of issues identified is very extensive, but not exhaustive. The rapid changes in big data technologies call for periodic updates of identification of issues.
• The issues identified are hard to prioritize, as this may be context-dependent and many issues are interconnected.
• The issues identified should not only or merely be regarded as problems to be solved, but rather as providing the
goals to strive for. An attitude of continuous attention is required for these issues.
These conclusions call for further work. The inventory in this deliverable may require periodic updates after some time. Furthermore, balancing and prioritizing the issues identified is hard in abstracto and may, therefore, call for more detailed, context-specific approaches.
Finally, because many of these issues cannot be solved once and forever, an attitude of continuous attention for these issues is called for.