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

Anúncios

“Do ensino da bioética e as escolhas temáticas dos estudantes”

Do ensino da bioética e as escolhas temáticas dos estudantes

Lucília Nunes

v. 25, n. 3 (2017)

Resumo

O ensino da bioética no Curso de Licenciatura em Enfermagem, em Setúbal, Portugal, na unidade curricular de Ética II, desde o ano letivo 2008/2009 a 2016/2017, ancorou-se na premissa da livre escolha pelos estudantes do tema para estudo e aprofundamento. Neste artigo, contextualizamos essa prática pedagógica, identificamos e analisamos as escolhas dos estudantes, problematizamos mudanças no decurso de nove anos letivos em breve relação com debates na sociedade civil e alterações do biodireito. Os temas mais escolhidos referiam-se a início de vida (interrupção voluntária de gravidez, gestação de substituição), fim de vida (eutanásia, distanásia) e biotecnologias (doação e transplante de órgãos). As conclusões apontam a relação entre bioética e formação profissional nas temáticas escolhidas e também a educação bioética para a cidadania.

Palavras-chave -Bioética. Ética. Educação em enfermagem.

Texto completo:
Adiciono que, nestes anos letivos, viver esta UC foi muito enriquecidor, pelos estudantes, pelas suas questões. E que investigar o que se faz, quando se é professor, pode bem passar por este género de investigação. Certo?!

Seminário de Encerramento do Ciclo de debates: “Decidir sobre o Final da Vida”

O Ciclo de Debates «Decidir no final da vida”, organizado pelo Conselho Nacional de Ética para as Ciências da Vida (CNECV) com o Alto Patrocínio do Presidente da República, encerra-se, em Lisboa, no próximo dia 5 de dezembro, das 10h30 às 17h30, na Fundação Champalimaud.

RECAPITULANDO, este ciclo de debates começou em Lisboa, dia 22 de maio, 

5 de junho, Porto,

20 de junho, Braga,

4 de julho, Vila Real,

18 de julho, Aveiro

12 de setembro, Covilhã,

26 de setembro, Ponta Delgada,

10 outubro, Évora,

27 de outubro, Setúbal,

7 de novembro, Coimbra,

20 de novembro, Funchal.

Em cada debate estiveram grupos e perspetivas diferentes, encerrando-se com um Seminário com participações internacionais.

“A landmark case transforms informed consent in the UK”, BioEdge

screenshot_1

“A ruling by a UK court last year forces doctors to tell their patients the full range of treatment options and allowing them to choose. The Royal College of Surgeons has warned of “a dramatic increase in the number of litigation pay-outs” made if doctors and hospitals do not make changes to the processes they use to gain consent from patients before surgery.

Traditionally it was up to British doctors to decide what risks to communicate to patients. But last year the UK Supreme Court held in a case called Montgomery vs Lanarkshire Health Board, that doctors must ensure patients are aware of any and all risks that an individual patient, not a doctor, might consider significant.

In other words, doctors can no longer be the sole arbiter of determining what risks are material to the patient.

In the past, litigation in malpractice suits was governed by the Bolam principle, which saw the judgement of medical experts as the main criterion for assessing reasonable care in negligence cases and for deciding what risks should be communicated to the patient for a chosen treatment.

Now the pendulum has swung from the “reasonable doctor” to the “reasonable patient”. This could mean a huge increase in the workload of doctors. A spokesman for the College said:

“It’s not hard to see how in many hospitals gaining a patient’s consent has become a paper tick-box exercise, hurriedly done in the minutes before a patient is wheeled into theatre for their procedure. Operating lists and consultation clinics are packed leaving little time for these important consent discussions. Patients must be given enough time to make an informed decision about their treatment and hospitals are going to have to give serious thought to how they plan in time for these discussions.”

Philippa Taylor, a bioethicist with the Christian Medical Fellowship, in London, believes that the Montgomery ruling may have the unexpected consequence of curbing abortion in the UK.

There is no absolute legal requirement for the doctor to have seen a patient requesting an abortion, or to have a one-to-one conversation about personal values and beliefs. However the new ruling has now made it clear that in the consent process doctors should explore options with that specific patient in mind. Those who ignore or withhold information due to bias (or paternalism) are breaking the law.

It is also possible that doctors who withhold information on the risks of abortion, even if small, such as the now well recognised link between abortions and later preterm deliveries, and the link to adverse mental health consequences, and even on the possible link to breast cancer, evidenced in some research, may be at risk of now breaking the law. It seems that the case for independent abortion counselling and accurate information giving has just got stronger.”

(os negritos foram assinalados por mim)

– See more at: http://www.bioedge.org/bioethics/a-landmark-case-transforms-informed-consent-in-the-uk/12082#sthash.2mpKywVJ.dpuf

João Lobo Antunes, 04.06.1944 – 27.10.2016

Site CNECV “É com profunda tristeza que damos conta do falecimento do Presidente do Conselho Nacional de Ética para as Ciências da Vida, Professor Doutor João Lobo Antunes.

A intervenção do Professor João Lobo Antunes no Conselho Nacional de Ética, como seu Presidente desde 2015, mas também como membro do seu terceiro mandato, de 2003 a 2009, deixa, a todos quantos tiveram a ventura de com ele partilhar a reflexão bioética, a força e a inspiração de uma participação intelectualmente elevada, humanista, de grande sensibilidade, movida por um grande sentido de serviço ao país, que estendeu ao Conselho Nacional de Ética, onde promoveu e estimulou uma reflexão da maior pertinência em matérias de particular sensibilidade.

Homem da ciência, médico, ensaísta, pensador, o Professor João Lobo Antunes deixa uma marca indelével na cultura portuguesa e a certeza de que a sua obra permanecerá, perpetuada na nossa memória e no nosso quotidiano. Deixa a todos uma enorme saudade também pelas suas qualidades pessoais, a sua generosidade e o seu afeto, que tocaram todos quantos tiveram a felicidade de o conhecer.

O CNECV presta assim a sua mais sentida homenagem e exprime uma imensa gratidão pelo contributo dado pelo Professor João Lobo Antunes para a construção pioneira deste Conselho e para a Bioética em Portugal.”

http://www.cnecv.pt/

14718867_10209638792360206_5572548487794925256_n

“Are ethical norms and current policies still relevant in face of the recent mass terror events?”

screenshot_1

Um antigo estudante enviou-me o link e o artigo vale a leitura:

Are ethical norms and current policies still relevant in face of the recent mass terror events?

Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine, 2016, 24:118
Abstract

The widespread utilization of social media in recent terror attacks in major European cities should raise a “red flag” for the emergency medical response teams. The question arises as to the impact of social media during terror events on the healthcare system. Information was published well before any emergency authority received a distress call or was requested to respond. Photos published at early stages of the attacks, through social media were uncensored, presenting identifiable pictures of victims. Technological advancements of recent years decrease and remove barriers that enable the public to use them as they see fit. These attacks raise ethical considerations for the patients and their rights as they were outsourced from the medical community, into the hands of the public. The healthcare system should leverage social media and its advantages in designing response to terror, but this requires a re-evaluation and introspection into the current emergency response models.

………………….

excertos:

The widespread utilization of social media in recent terror attacks of major European cities, including Brussels (March 2016), Paris (November 2015 & June 2016), and Istanbul (June 2016) should raise a “red flag” for the emergency response community, most specifically for medical response teams.

Social media has been researched extensively in regards to emergency management for both natural and man made emergencies [1, 2]. Major recent disasters, such as the 2010 Haiti earthquake, the 2012 “Super-storm Sandy” or the 2015 Nepal earthquake have all presented social media as the major communication channel between first responders and the public. The question arises as to the impact of social media during terror events, and whether the bi-directional and extremely rapid communication should serve as a wake-up call for the healthcare system concerning ethical norms that up to now have been accepted as important.

……………

conclusions

The terror attacks that were inflicted on European cities during the last year exemplified that EMS organizations, as well as other health services, should reassess their response policies. This should include better education of the public sharing photos and information that may harm and invade patients’ privacy. There is a growing rift between the ethical norms which emergency medicine and health services’ professionals adhere to, compared to those that the public adopts while engaging in social media during emergencies. Medical guidelines and policies utilized during the response phase should be modified and adjusted to the new reality that had already changed.

The healthcare system should adopt, use and leverage social media and its advantages in designing response to terror events as well as other types of emergencies

———————–

Junto o pdf aqui: are-ethical-norms-and current-policies still relevant

Leituras ou [re]leituras: “Pessoas transparentes”

screenshot_3

Pessoas Transparentes. Questões Actuais de Bioética, de Manuel Curado e Nuno Oliveira

 O que primeiro vi no livro, a par do título, foi a silhueta recortada de uma pessoa na capa (mesmo recortada) e a interrogativa sobre o conceito – «transparentes»?!
Prefácio
“A nossa boca abre-se de espanto quando nos deparamos com notícias relacionadas com a Bioética. A história dos bebés que nascem depois da morte das suas mães, as técnicas de reprodução que usam óvulos de duas mulheres e esperma de um homem para conceber uma criança, as aplicações de engenharia biomédica no corpo humano, os transplantes da cara, a interrupção das medidas de nutrição e hidratação artificiais de pessoas em coma, a clonagem, a investigação e comércio de células estaminais, o transplante de órgãos, a utilização de fármacos para alteração do humor e da personalidade das pessoas, o aborto em diferentes momentos de gestação,  a alteração do sexo, a engenharia genética, o consentimento informado, o direito a saber, o direito a não saber, a definição de morte, o diagnóstico pré-natal, o armazenamento de embr´~oes humanos congelados, o uso de seres humanos, de animais e de tecido fetal na investigação científica, a identificação de portadores do vírus da SIDA e de outras infecções graves, o destino a dar aos resíduos tóxicos e hospitalares, a afetação de recursos escassos na saúde, a fronteira ténue e perigosa entre o estado e o indivíduo no que diz respeito à vida e à intimidade, a eutanásia e o suicídio assistido… A lista de notícias que nos surpreendem, encantam, chocam e nos envchem de perplexidade pode continuar infindavelmente.”

Edições Almedina, 2010