Publicado em Ética, Sociedade

World Values Survey – World cultural map

WVS

Portugal não consta, mas vale a pena saber.

The World Values Survey provides data on socio-cultural and political change worldwide. The WVS consists of national sample surveys in over 90 countries, using a common questionnaire with variables on beliefs, values, economic development, democratisation, religion, gender equality, social capital, and subjective well-being.

The survey is coordinated by the World Values Survey Association (Stockholm) and undertaken by social scientists since 1981. Work on the seventh wave of WVS commenced in 2017.

See also the EUI Library resource pages for the European Values Study, European Social Survey, Eurobarometer and the ICPSR data archive.

Time period – Six waves of the World Values Survey are available:   Wave 6 (2010-2014)

Wave 7 (forthcoming 2019)

  • The WVS Association also provides integrated longitudinal multiple-wave data files in Stata, SPSS and rdata format:

Support links

The WVS documentation page gives user instructions and details of data collection methology.

Publicado em Ética, Política, Sociedade

Michael Sandel e Steven Pinker em Lisboa

Ética, Valores e Política

Conferência promovida pela Fundação Francisco Manuel dos Santos, em streaming…. o que permitiu assistir em qualquer sítio (como em casa). Vantagens da tecnologia!

Should we worry with market societies? Two reasons to worry about…. the first has to do with inequality… the second reason is more hard to describe and more insidious…. corrupt things…

We lack a richer moral vocabulary to reasoning together… deepen human ties…

Do resumo

“O dinheiro não dá felicidade mas talvez contribua para a democracia.” – “As crises podem não ser o fracasso da política” – “O populismo faz parte da democracia” – “A política é a construção das nuances” – “Como é que democracia deve fazer bem as coisas certas?” – “A crise económica agravou a crise da confiança” – “menos confiança nos partidos, mais interesse na política” (“será este paradoxo o crescimento do populismo?”)

“O debate dos nossos dois pensadores foi fascinante” – “Individualmente ou coletivamente, talvez seja um desafio tentarmos definir o que é uma vida boa” –

“talvez os princípios e valores não existam para nos fazer felizes mas para nos fazer dignos da felicidade”

Publicado em Ética, Bioética, Livros e leituras, Saúde

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

Publicado em Ética, Big Data, Bioética

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.
Publicado em Ética, Sociedade

Ciclo de debates. Decidir Sobre o Final da Vida. #2

“Iniciativas recentes de cidadãos destinadas a promover intervenções legislativas sobre a eutanásia e o suicídio assistido colocaram estes temas na discussão pública. A sociedade é chamada a refletir sobre as questões relacionadas com o final da vida e os dilemas éticos que enfrenta nas opções que irá tomar.

O Conselho Nacional de Ética para as Ciências da Vida tem a honra de convidá-lo a estar presente na segunda sessão do Ciclo de Debates “Decidir sobre o final da Vida”, que decorrerá no próximo dia 5 de junho, das 17h00 às 19h30, no Palácio da Bolsa, no Porto.

A entrada é livre, mediante reserva de lugar.”

site CNECV

A 1ª sessão decorreu em Lisboa, dia 22 de maio.

Publicado em Ética, Guidelines, Saúde, Sociedade

“Guidance for managing ethical issues in infectious disease outbreaks” [OMS, 2016]

oms-2016
World Health Organization 2016
Forewords:
“Infectious disease outbreaks are periods of great uncertainty. Events unfold, resources and capacities that are often limited are stretched yet further, and decisions for a public health response must be made quickly, even though the evidence for decision-making may be scant. In such a situation, public health officials, policy-makers, funders, researchers, field epidemiologists, first responders, national ethics boards, health-care workers, and public health practitioners need a moral compass to guide them in their decision-making. Bioethics puts people at the heart of the problem, emphasizes the principles that should guide health systems, and provides the moral rationale for making choices, particularly in a crisis.”
Introduction:
“This guidance grew out of concern at the World Health Organization (WHO) about ethical issues raised by the Ebola outbreak in West Africa in 2014–2016. The WHO Global Health Ethics Unit’s response to Ebola began in August 2014, immediately after it was declared a “public health emergency of international concern” pursuant to the International Health Regulations (2005). That declaration led to the formation of an Ethics Panel, and later an Ethics Working Group, which was charged with developing ethics guidance on issues and concerns as they arose in the course of the epidemic. It became increasingly apparent that the ethical issues raised by Ebola mirrored concerns that had arisen in other global infectious disease outbreaks, including severe acute respiratory syndrome (SARS), pandemic influenza, and multidrug-resistant tuberculosis. However, while WHO has issued ethical guidance on some of these outbreaks, prior guidance has only focused on the specific pathogen in isolation. The purpose of this document is to look beyond issues specific to particular epidemic pathogens and instead focus on the cross-cutting ethical

issues that apply to infectious disease outbreaks generally. In addition to setting forth general principles, it examines how these principles can be adapted to different epidemiological and social circumstances.”
Relevant ethical principles
Ethics involves judgements about “the way we ought to live our lives, including our actions, intentions, and our habitual behaviour.” The process of ethical analysis involves identifying relevant principles, applying them to a particular situation, and making judgements about how to weigh competing principles when it is not possible to satisfy them all. This guidance document draws on a variety of ethical principles, which are grouped below into seven general categories. These categories are presented merely for the convenience of the reader; other ways of grouping them are equally legitimate.”
Justice
Beneficence
 Utility

Respect for persons
 Liberty
Reciprocity
Solidarity

Table of Contents

Guidelines
1. Obligations of governments and the international community

2. Involving the local community

3. Situations of particular vulnerability
4. Allocating scarce resources

5. Public health surveillance

6. Restrictions on freedom of movement

7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease

8. Research during infectious disease outbreaks

9. Emergency use of unproven interventions outside of research

10. Rapid data sharing
11. Long-term storage of biological specimens collected during infectious disease outbreaks

12. Addressing sex- and gender-based differences

13. Frontline response workers’ rights and obligations

14. Ethical issues in deploying foreign humanitarian aid workers