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Mostrando postagens com marcador bioética. Mostrar todas as postagens
Mostrando postagens com marcador bioética. Mostrar todas as postagens

terça-feira, 16 de maio de 2017

Texans debate ‘therapeutic privilege’ for ob-gyn doctors

A controversial bill protecting doctors against ‘wrongful birth’ claims has passed the Texas Senate, garnering strong criticism from pro-choice groups.
The Physician Liability Bill allows doctors to withhold information about fetal abnormalities or disabilities from mothers when the disclosure of the information is deemed harmful. This will in turn prevent parents from suing doctors for what is known as ‘wrongful birth’ – according to which the doctor can be held accountable for preventing parents from making an informed decision about whether to have the child.
Pro-choice advocates argue that the bill is a veiled attempt to limit abortion rights.
“This bill places an unreasonable restriction on the constitutional right of a woman to make an informed decision about whether or not to have an abortion,” said Margaret Johnson, a member of the League of Women Voters of Texas, after the bill cleared the Senate on Monday.
De Paul University bioethicist Craig Klugman was similarly critical of the proposed law. “The bill would permit doctors to purposefully mislead the patient with no regard for the patient’s autonomy or best interest in an attempt to make a particular decision favored by the physician—to choose against abortion”, he wrote in a blog post.
But Republican Senator Brandon Creighton, the sponsor of the bill, described the current legal situation as “deeply disturbing”, and said that he would “fight to protect the value and dignity of every life including those born with disabilities”.
The bill will now be debated by Texas’s House of Representatives, where it is expected to meet strong resistance.




















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CEBID - Centro de Estudos em Biodireito

quarta-feira, 15 de fevereiro de 2017

quinta-feira, 17 de novembro de 2016

Cotard’s Syndrome and bioethics

Bioethicists spend a lot of time writing about patients who want to die. But what about those who think they are already dead?
Cotard’s Syndrome is a rare mental condition that has among its symptoms delusions of being dead or not existing, and the sensation that one’s blood and internal organs are putrefying. The condition, which is typically found in people already suffering from mood or psychotic disorders, has received significant attention in the popular media, in addition to being the subject of various interdisciplinary enquiries.
The condition is believed to be associated with cognitive-malfunction in regard to awareness of one’s person and body.
The Syndrome has significance for the field of philosophy, and in particular, understanding the popularity of sceptical lines of thought in the history of ideas. The condition may also may provide significant insights for the development of artificial intelligence technology, as was highlighted in a recent article in Quartz.
At a practical level, the Syndrome presents a salient example of when clinicians would be warranted in overriding a patient wishes for the cessation of treatment. Though in a bioethical climate where mental illness is being removed as an obstacle to euthanasia, it might perhaps be interesting to see how bioethicists treat a case of severe and incurable Cotard Syndrome.



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CEBID - Centro de Estudos em Biodireito

terça-feira, 8 de novembro de 2016

Enganando a morte



Enganando a morte

POR CAMILA APPEL

Capa da revista “The Economist” dessa semana traz a frase: “Cheating death” (enganando a morte). O artigo se refere a descobertas científicas que podem desacelerar o envelhecimento. Nas décadas passadas, a expectativa média de vida da população aumentou devido a melhorias na alimentação, saúde pública, medicação e habitação. Agora, essa expectativa continuará crescendo devido ao uso de determinados remédios antienvelhecimento. Alguns, inclusive, já existem.
Em breve, não será apenas a expectativa média de vida que irá aumentar, mas sim a expectativa máxima. Poderemos viver mais. Partes do corpo já desgastadas serão substituídas por novas partes desenvolvidas a partir da célula da própria pessoa.Técnicas de edição de genes também serão possíveis, já que é sabido que algumas características de certos genes podem nos fazer viver mais.
O artigo toca num ponto importante: do ponto de vista do indivíduo, viver mais é muito bom. Mas do ponto de vista da sociedade, pode trazer desafios e não ser tão bom assim, ao exacerbar problemas econômicos e sociais já existentes.
Como, por exemplo, na área da saúde pública. Se viver mais é caro, como definir quem terá acesso ao tratamento antienvelhecimento primeiro? Como serão mais acessíveis aos mais ricos, aumentará anda mais a desigualdade social de democracias que já sofrem com essa realidade?
O artigo coloca outras questões a serem pensadas: os trabalhadores mais velhos sofrerão discriminação como ocorre hoje em dia? Os chefes vão continuar suas carreiras por mais tempo ou vão cansar ou decidirão fazer algo completamente diferente? Os velhos vão manter uma atitude mental e física jovial ou a sociedade vai ficar mais conservadora (porque os velhos tendem a ser mais conservadores)?
Há a possibilidade da vida tornar-se cheia de novos recomeços, ao invés de ser apenas uma única história. Esse ponto é meu predileto e aí o aumento da longevidade me anima. Gosto da expectativa de recomeçar várias vezes ao longo de uma vida, testar diversas profissões, estudar várias áreas do conhecimento, nos especializarmos em diferentes assuntos nas várias fases.
No lado econômico, a política de aposentadoria precisaria ser reformulada. E a família? Haveria uma tendência ainda maior de termos mais de um “grande parceiro” na vida. Os filmes poderiam começar a refletir a busca de algumas almas gêmeas ao invés de uma.
O artigo em questão cogita um futuro no qual as famílias se assemelhariam a labirintos. Com a ajuda da tecnologia, poderíamos reproduzir por muito mais tempo e, assim, termos filhos com diversos parceiros.
E toca num ponto muito falado aqui blog : focar em qualidade de vida e não apenas em quantidade, para não correr o perigo de acabar igual ao tadinho do Títono – aquele que pediu vida eterna aos deuses mas esqueceu de pedir também a eterna juventude.
Se órgãos forem realmente substituídos por novos órgãos desenvolvidos do zero a partir de nossas células, ou mesmo impressos em tecnologia 3D, eu acho que a mente será um desafio sem soluções no horizonte.  Como substituir o cérebro? Um remédio poderia tornar nossos neurônios atletas olímpicos? Mas e nossa capacidade de armazenar memórias?
Outro artigo dessa mesma edição da revista,  menciona tratamentos com restrição de caloria. Em animais, experimentos com esse tipo de restrição diminuiu o risco de câncer e doença do coração, por desacelerar a degeneração dos nervos.
Esse tratamento ainda não foi clinicamente comprovado em humanos, mas sugere que o envelhecimento não é apenas um acúmulo de defeitos, e sim um fenômeno por si só, que está sob o controle de genes e do ambiente. Dessa forma, poderia ser manipulado, seja por mudanças no ambiente (como a dieta de restrição de calorias) ou acessando os caminhos metabólicos dos genes via remédios.
Esse tipo de manipulação (focando no envelhecimento como um processo) poderia aumentar a quantidade e qualidade de vida de forma que os remédios focados em doenças específicas não conseguiriam.
Hoje em dia, as agências reguladoras não permitem drogas antienvelhecimento. Me incomoda a abordagem de ver o envelhecimento como uma doença a ser curada. Me parece uma visão distorcida e cheia de preconceitos, mas é justamente o ponto do artigo da “The Economist”: “Se os reguladores mudarem seu posicionamento, o interesse seria imenso. Uma condição que afeta a todos é o maior mercado potencial que se possa imaginar”. Há indícios de que essa proibição deva ser modificada em breve e drogas anti-idade sejam aprovadas.
O interesse mercadológico tem crescido com descobertas sobre biologia celular, funcionamento de genes e análise de dados de sequências do genoma humano, demonstrando como o envelhecimento ocorre e como pode ser restringido.
Pesquisa no Human Longetivity Inc, por exemplo, descobriu que algumas variações genéticas são ausentes em pessoas mais velhas. O que implica que sua presença pode gerar expectativas de vida mais curtas.
Um tratamento de regeneração que vem sendo estudado é o rejuvenimento de animais com o uso do sangue de animais mais novos – há pesquisas com infusões do plasma de sangues mais novos para tratar Alzheimer (ainda sem resultados conclusivos).
O artigo coloca o limite máximo que poderíamos viver, com o uso de tratamentos e drogas, em 120 anos, “porque parece ser mais ou menos o limite superior natural de uma expectativa de vida humana”.
Um artigo da revista “Time” não concordaria com esse número, pois já publicou uma capa com uma bebê e a manchete: “Esse bebê poderia viver até os 142 anos” (leia post sobre essa edição nesse link).
No velhice da geração que está nascendo agora, teremos sim limites “mas ninguém pode adivinhar quais serão esses limites”, conclui o autor.
Sobre esse assunto, recebi uma carta do leitor Fabio Storino. Reproduzo uma parte aqui: “Penso muito sobre essa questão do “viver para sempre”, que me vem à cabeça quando converso com meu filho Tom (3 anos e 8 meses) sobre a morte. E sempre chego à conclusão de que isso seria péssimo para a humanidade. Além da questão de sustentabilidade econômica e ambiental, tem outra que me pega muito: hábitos e práticas demorariam muito mais para mudar. Muita coisa avança na sociedade “um funeral de cada vez”, com a chegada de novas gerações, novas ideias, novos paradigmas. Olhando para uma foto instantânea da nossa sociedade é muito fácil ver como as múltiplas gerações que convivem hoje carregam, cada uma, alguns valores e hábitos muito próprios. Às vezes a sociedade como um todo muda, mas, muitas outras vezes, velhos hábitos vão sendo enterrados junto com as pessoas e novas mentalidades dependem de novas mentes. Tenho meus momentos de “get off my lawn, you punks!”, mas também tenho um profundo otimismo quando vejo parte da velha turma “saindo” e a turma nova que está chegando! Acho esse ciclo fundamental para a sociedade”.


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CEBID - Centro de Estudos em Biodireito

sexta-feira, 21 de outubro de 2016

Biological ties are unimportant, says bioethicist




The search for one’s “real” father or “real” mother is a motif not only of yesteryear’s literature but today’s news. Sophocles’ Oedipus Rex, Shakespeare’s Pericles, Fielding’s Tom Jones, or Star Wars’ Luke Skywalker draw on the same anxieties as AnonymousUs, a website for children of sperm donors, and the unexpected parentage of the Archbishop of Canterbury.
But is that feeling good or bad, justifiable or unjustifiable? An ethical evaluation of much of contemporary assisted reproduction rests on the answer.
The Journal of Medical Ethics today published a sturdy defence of the idea that genetic parentage is not intrinsically valuable by Ezio Di Nucci, of the University of Copenhagen.
Di Nucci begins by disputing an article by J. David Velleman, of New York University, in Philosophical Papers. In the way of philosophers, it is described as a “recent” paper, but it was published in 2010. Velleman, the descendant of Russian Jews who emigrated to the United States, tried to make sense of our attachment to our genetic heritage. He argued, basically, that knowing our forebears helps us to make sense of our own identity and he concluded that “donor conception is wrong”.
Adoptees can certainly find meaningful roles for themselves in the stories of their adoptive families. Even so, they seem to have the sense of not knowing important stories about themselves, and of therefore missing some meaning implicit in their lives, unless and until they know their biological origins.
Di Rucci’s immediate focus is on IVF with ROPA (Reception of Oocytes from Partner), in which one partner in a lesbian relationship provides the eggs and the other gestates the baby. But his arguments apply to IVF generally. He does this on two grounds.
First, he says that the biological contribution to one’s identity is not necessarily important. The fact that many disconnected offspring feel that something is missing is hardly conclusive. If 50% of adopted children may end up looking for their biological parents,  but 50% do not.  
Second, insistence on a biological contribution is patriarchal. A woman contributes half of the genetic material and all of the gestation; a man only half of the genetic material. Yet he claims half of the parentage.
Our commitment to equality, then, is exactly what should make us sceptical of this appeal to biological ties based on patriarchal prejudices about how biological ties affect role distribution and power imbalances within a family.
A parental project cannot be liberated from the patriarchal norm by trying to redistribute the very phenomenon, biological ties, which is consistently used to reinforce our patriarchal status quo: rather, liberation requires the establishment of fair and equal parental projects where biological ties do not play any role in the distribution of roles, responsibility and, ultimately, power.
Di Rucci concludes that IVF with ROPA is a legitimate preference, but that it need not be justified by referring to the importance of biological ties. That would simply be a concession to patriarchal norms.



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CEBID - Centro de Estudos em Biodireito

terça-feira, 14 de junho de 2016

El Comité de Bioética recomienda ampliar la obligación de vacunar


El Comité de Bioética recomienda ampliar la obligación de vacunar

"No es aceptable deontológicamente" que el personal sanitario se niegue a inmunizarse

Vacunas
La vacunación de una mujer. 


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CEBID - Centro de Estudos em Biodireito

Duas visões: a “pílula do câncer” deve ser liberada no Brasil?



A fosfoetanolamina sintética, a chamada "pílula do câncer", está gerando um debate no pais.

Ingrid FagundezDa BBC Brasil, em São Paulo

Promessa de vida mais longa ou irresponsabilidade médica? A fosfoetanolamina sintética, a chamada "pílula do câncer", está no meio de um debate que ganha mais um capítulo hoje.
Cápsulas de fosfoetanolamina produzidas desde os anos 90 no Instituto de Química de São Carlos (Foto: Cecília Bastos/USP Imagem)Cápsulas de fosfoetanolamina produzidas desde os anos 90 no Instituto de Química de São Carlos (Foto: Cecília Bastos/USP Imagem)
Nesta quinta-feira, o Supremo Tribunal Federal julga uma ação da Associação Médica Brasileira (AMB) que questiona a lei que libera o porte, o uso, a distribuição e a fabricação da substância, supostamente eficaz no combate contra tumores.
Sancionada pela presidente afastada Dilma Rousseff a poucos dias da votação do impeachment no Senado, o texto permite que pacientes diagnosticados com a doença usem a fosfoetanolamina por livre escolha.
A sanção foi criticada pela comunidade científica por liberar um composto que não tem registro na Anvisa nem eficácia comprovada.
‘Para minha mãezinha’: como a lei da ‘pílula do câncer’ uniu Congresso dividido e foi aprovada em tempo recorde
Produzida há mais de 20 anos, a fosfoetanolamina sintética foi estudada pelo professor aposentado Gilberto Orivaldo Chierice, no Instituto de Química da USP em São Carlos, e distribuída gratuitamente durante décadas para pacientes.
Em abril, o presidente do STF , Ricardo Lewandowski, autorizou a USP a interromper o fornecimento das pílulas, o que levou a uma enxurrada de ação judiciais e pôs a "fosfo" nos holofotes.
Para entender os argumentos contrários e favoráveis à liberação da pílula, a BBC Brasil conversou com dois dos nomes mais importantes nesta disputa: o presidente da AMB, Florentino Cardoso, e um dos principais pesquisadores da área, o imunologista Durvanei Augusto Maria.
Eficácia e efeitos colaterais
Entre as razões para barrar o acesso, Cardoso cita o desconhecimento sobre a ação e os efeitos colaterais da fosfoetanolamina em seres humanos. Na ação proposta ao STF, a AMB diz que essas incertezas seriam incompatíveis com direitos constitucionais fundamentais, como o direito à saúde, à segurança e à vida.
"Está sendo autorizado o uso de uma substância que as comunidades brasileira e internacional não conhecem em relação ao câncer. O medicamento serve para quê? Em que dose? Deve ser usado como? Qual doente pode usar? Não temos absolutamente nada disso."
Para Cardoso, os estudos feitos até agora sobre a ação da substância em tumores não comprovam sua eficácia e nem expoõem seus riscos.
No país, não são muitos os trabalhos publicados sobre o assunto. O "pai" da pílula do câncer, Gilberto Chierice, tem em seu currículo só seis pesquisas publicadas sobre a molécula em revistas internacionais. Elas saíram entre 2011 e 2013 e falam da ação da substância em células em laboratório e animais. Nenhuma envolvendo pacientes humanos foi publicada ainda.
O imunologista Durvanei Augusto Maria, que analisa no Instituto Butantan a ação da "fosfo" em células cancerígenas, tem doze trabalhos publicados sobre o tema. Para ele, que foi apresentado à substância por um aluno de Chierice, a literatura existente indica a eficácia da molécula.
Segundo Maria, desde 2000 ele observa que a substância impede o crescimento de tumores e evita a formação de metástases, ao induzir a liberação de enzimas que matariam a célula doente. Além disso, teria um "afinidade química" para penetrar nas células tumorais, poupando as saudáveis.
"A fosfo tem um mecanismo de ação distinto dos quimioterápicos. Estes não conseguem distinguir a célula normal da tumoral."
Maria também cita estudos de universidades alemãs, financiados por indústrias farmacêuticas, que estariam avançados na fase de testes com humanos.
"Já está sendo feita a avaliação de risco. É expressivo o aumento da sobrevida, o controle do crescimento e da invasão."
Cardoso diz desconhecer esses estudos e afirma que, dentro do Brasil, há muitas lacunas nas informações.
"Câncer não é uma doença só, são várias. Uma droga serve para uma e para outra não. Quando testam em camundongos, não mostram que vai ser efetivo (em pessoas)."
Após aprovação por Câmara e Senado (acima) e sanção de lei por Dilma Rousseff, Supremo Tribunal Federal julga uma ação da Associação Médica Brasileira (AMB) que questiona a lei que libera o porte, o uso, a distribuição e a fabricação da substância
Estudos do Ministério da Ciência
O presidente da Associação Médica Brasileira menciona também os resultados dos primeiros testes feitos pelo Ministério da Ciência e Tecnologia neste ano. Relatórios divulgados em março falavam que a "pílula do câncer" produzida na USP de São Carlos não era tóxica, mas também não combatia os tumores. Novas análises já estão programadas.
Logo depois da divulgação, o professor Gilberto Chierice questionou, em um ofício da Defensoria Pública da União no Rio de Janeiro, os resultados obtidos pelo ministério. Durvanei também participou da elaboração do documento. Segundo ele, um dos problemas das análises foi a ordem de grandeza testada, menor que aquela já usada em outros testes.
Apesar de rebater as críticas sobre o que já foi estudado até então, Duvarnei Maria afirma que mais análises são necessárias. Só que é preciso agilizar o caminho até o registro da Anvisa.
"Sou favorável que todos os testes sejam executados. Mas pretendo que não haja tanta morosidade, porque existem estudos há mais de 25 anos, quando o composto começou a ser estudado. Se for cumprir todas as etapas isso não sai por menos de 15 anos. E estou sendo muito otimista."
Cardoso admite que existem burocracias no processo, mas enfatiza a importância de cumprir todo o rito, para evitar complicações no futuro.
"Todo país sério, quando se descobre determinada substância e se testa, tem um rito a seguir. (É preciso) fazer a pesquisa clínica para chegar às conclusões, ver como funciona in vitro, em animais e depois em um grupo controlado de pessoas."
Ele culpa os pesquisadores por não terem aproveitado as décadas de distribuição gratuita das pílulas para fazerem análises mais profundas.
"Quando uma pessoa está utilizando uma substância há 20 anos e não fez nenhuma estudo sério... o problema é que ainda impacta muito na vida das pessoas e das famílias. E elas se apegam a qualquer coisa."
Pressão popular
Para Cardoso, foi essa pressão popular que levou a lei a ser aprovada em tempo recorde no Senado, dando aos parlamentares poderes que eles não têm: por em risco a saúde da população. Além de abrir precedentes para a liberação de outras substâncias não testadas.
"A Anvisa é que tem que regular, não é um deputado, um senador. Estamos sendo motivo de chacota no mundo inteiro."
A mesma aprovação é vista como uma conquista popular pelo imunologista Durvanei Augusto Maria. Para ele, é como se os direitos dos doentes fossem finalmente reconhecidos.
"Como cidadão, acho que é o primeiro momento que a população portadora de uma doença grave se mobilizou para ter um acesso a um composto que pode propiciar uma maior condição de vida, sem sequelas. É um marco importante."
Sobre o julgamento desta quinta-feira, no STF, os dois também têm opiniões bem diferentes Para Cardoso, a revogação da lei sancionada por Dilma seria uma prova de "seriedade" do país. Para Maria, um "retrocesso".


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CEBID - Centro de Estudos em Biodireito

quinta-feira, 9 de junho de 2016

New stem cell research guidelines


In response to the rapid development of scientific research and mounting ethical concerns, The International Society for Stem Cell Research (ISSCR) has released updated guidelines for stem cell research and the development of new clinical therapies. 
The new guidelines deal with a number of issues unaddressed in previous ISSCR documents, including genetic experimentation on human embryos, embryo research oversight processes, and the use of “undue financial inducement” to entice women to donate their eggs for research pruposes.
The full ISSCR document can be found here, and summary here
“The field of stem cell research is growing at a rapid pace, with scientists and physicians developing new therapies that can help patients around the world who suffer from a wide variety of conditions,” said Sean J. Morrison, Ph.D., ISSCR president and director of the Children’s Medical Center Research Institute at UT Southwestern. “These guidelines are essential to protect the integrity of the research and to assure that stem cell treatments are safe and effective,” he said. 
Writing in Nature, a group of several international of bioethicists commended the ISSCR for the broad-reaching new guidelines.
“The ISSCR guidelines continue the tradition of scientists creating professional standards for the responsible conduct of research. They speak most directly to those engaged in stem-cell research but are also relevant to regulators, journal editors, press officers, physicians, funding bodies and patients. Such a global effort to establish research standards offers a model for other contentious research arenas — from artificial intelligence to climate engineering.” 

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CEBID - Centro de Estudos em Biodireito

terça-feira, 24 de maio de 2016

Vulnerability in medical contexts: interview with Steve Matthews



There has been growing interest among ethicists in the theme of vulnerability. Some have gone as far as to suggest that vulnerability could serve as a new principle in bioethics. In a recent edition of the journal Theoretical Medicine and Bioethics, a number of leading bioethicists explored the topic of ‘human vulnerability in medical contexts’. This recent journal edition – a first among any of the leading bioethics journals –provides significant insight into the notion of vulnerability and its relevance to contemporary clinical practice. Xavier Symons, the deputy editor of Bioedge, recently spoke with guest editor Stephen Matthews about the key themes discussed.
Stephen Matthews is a senior research fellow at the Plunkett Centre for Ethics and a member of the Centre for Moral Philosophy and Applied Ethics at Australian Catholic University. Steve co-edited the special edition with Bernadette Tobin, Director of the Plunkett Centre for Ethics.   
******
Xavier Symons: You contend that vulnerability need not always be seen as “an obstacle or pathology to be removed”. Do you think this idea is relevant to the treatment vs. enhancement distinction in medicine? 
Steve Matthews: Yes, it’s absolutely relevant. An implicit assumption of those whose moral position is quite permissive of the technologies of human enhancement is a kind of perfectionism, or at least a maximising kind of attitude that can tend to swamp moral contemplation regarding vulnerable traits, the possession of which is not undesirable.
This is the idea expressed in John Quilter’s very thoughtful piece, and I take it that something like this is being expressed for the medical context in the article by Wendy Rogers and Mary Walker.
Actually there is a background fundamental question to all of this and it’s about whether certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. If we think there are such traits, this would inform the treatment vs enhancement question from the outset. It may be that we possess such traits and we should be concerned not to enhance ourselves to eliminate them. It may be, also, that we should not be jumping in to treatment occasioned by the slightest deviation from the path of a happy life.
We mention in the introduction the case of grief. Those who have experienced a period of grieving know that it can involve an extremely unhappy time, very disruptive and even destructive. Nevertheless there are strong arguments for thinking this is something that marks the value of the connections we had, and not something to be eliminated.
But let’s not be too glib about this. If there are such traits it does require a philosophical defence to state what they are and to understand the extent to which such (not undesirable) vulnerability should be retained. In the case of grief, this can tip over into a state of extraordinary dysfunction and pathology, in which case, a trip to one’s physician is obviously in order.
XS: How important do you think trust – which I take is archetypal kind of vulnerability in human life – is for a well-functioning healthcare system? 
Matthews: This is a very good question. Without trust the compliance costs of any human institution, where relationships are governed by rules, would be prohibitive. For a defining feature of trust is that I may rely on a trusted party without the need to monitor them constantly, or even at all. Trust is highly enabling for a well-functioning healthcare system then, just measured in the banal terms of cost as just stated.
But you’re right, if A trusts B, then A is made vulnerable to B in case B turns out to be unreliable or untrustworthy. The inference is then very clear: systems, including the healthcare system, conceptually depend on levels of vulnerability. The vulnerability goes both ways. Patients are just the obvious case, and not even the best system of informed consent can really compensate for the fact that the doctor-patient relation is one of imbalance: an epistemic imbalance and a power imbalance.
But as both Justin Oakley and Mayes et al argue, the medical fraternity, in various ways and in virtue of their positions of responsibility are vulnerable in so far as they must trust each other and the systems they operate within.

XS: Much of the role of palliative care involves helping ailing patients to come to terms with their vulnerability. Are there other areas of medicine where vulnerability is particularly important? 
Matthews: The most vulnerable patients are those whose (autonomy) competence is diminished. The limit case of this is a severely injured person who comes into a hospital unconscious and who cannot be identified. No one can speak on their behalf, and so initially healthcare workers must make, and take responsibility for, all decisions pertaining to their care.
Other groups include dementia patients, the very young, or those with a mental illness. Very depressed patients, for instance, are known to have highly limited capacities in the estimation of risk and benefit and what should be done to assist them.
Another vulnerable group is those with drug dependence issues. The United States is currently going through an opiates epidemic. In 2014, there were 47,000 overdose deaths from prescription and street opiates there. These patients are particularly vulnerable for two reasons. Often medical staff have little understanding of addiction and little sympathy for drug dependent persons who they blame. Secondly, addiction is a chronic condition, which means that over time the drug dependent person becomes resigned to their drug dependent status, and this leads to lost hope, and a sense of ineffectiveness.
Chronic conditions such as this are a great burden on healthcare systems and represent an important challenge to medical staff who may not view such people as the vulnerable types they really are.
XS: Australia has a relatively strong social security net. Is ‘vulnerability’ a justification for a universal healthcare system? 
Matthews: Good question again. The conception of a government-supported healthcare system as providing a safety net I think frames the idea of universal healthcare incorrectly. Such a conception runs the risk of making care available only to those who need the net – those vulnerable types who have fallen, and but for the net, would crash to the ground.
And this leaves open an argument that healthcare should be made available only for those whose vulnerability is unpredicted. Then we enter a range of familiar debates about whether, for instance, smokers or risk takers generally deserve the safety net – paid for by all – when other more responsible people are not smokers, risk takers etc. That is a dangerous debate, as we know, and only leads to adversaries digging themselves into positions that tend not to shift.
Now, having said that, I think there is wider philosophical conception of vulnerability – wider than the folk idea that excludes (say) smokers – that could be used to justify the establishment and maintenance of a universal healthcare system. Variations on this conception are outlined in the introduction to the special issue.
On this view, human vulnerability is fundamental, pervasive, shared and possessed by all, independently of perceived power imbalances. Of course there are special cases as well, and obviously some groups are more vulnerable than others, but on the wider conception, no one, as it were, escapes.
Under that view, we can run a line of argument which says that a universal healthcare system is rational because vulnerability is a universally held human trait. On this view the idea of a safety net is almost trivialised, and that is because the understanding is that a healthcare system is a rational response to recognising a fact about our natures, our natures as embodied, social, interdependent creatures.

XS: One theorist who wasn’t mentioned in your introduction to the issue was Alasdair MacIntyre. To what extent do you think MacIntyre’s writings on human dependency overlap with the ideas advanced in this issue of Theoretical Medicine? 
Matthews: It would take us beyond the scope of this interview to deal in depth with MacIntyre’s writings. I can at least say this much: In Dependent Rational Animals MacIntyre asserts that “an ethics independent of biology” is impossible. He argues that vulnerability and dependency are constants in the lives of human beings, regardless of what stage of life they are at. This idea is similar to what I said in answer to your first question.
Many philosophers claim that certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. MacIntyre is one such philosopher. According to MacIntyre, to develop our capacity as moral agents means to achieve a certain measure of independence, but this should not come at the expense of acknowledging our constant and continued dependence. In one sense, such an acknowledgement is constitutive of moral development. Insofar as dependency is very closely related to vulnerability, MacIntyre’s ideas overlap significantly with the themes of this journal edition.




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CEBID - Centro de Estudos em Biodireito

quinta-feira, 12 de maio de 2016

Existential risk #1: Mass extinction events


Eve of Destruction?
Human beings are more likely to die in a mass extinction event than a car crash, according to a new report released by the UK based Global Challenges Foundation.  The report – a document intended to provide international policy makers with an executive summary of contemporary existential threats for humanity – suggests that there is a 9.5% chance that a human extinction will occur in the next 100 years (the danger of dying in a car crash is below 2%).
The authors list among the most serious and likely threats over the next 5 years a ‘natural pandemic’, an ‘engineered pandemic’, and ‘nuclear war’.
While discussing the much-feared threat of global climate change, the report also places significance emphasis on catastrophic risks emerging from technology:
“Emerging technologies promise sig­nificant benefits, but a handful could also create unprecedented risks to civilization and the biosphere alike. Biotechnology could enable the creation of pathogens far more dam­aging than those found in nature, while in the longer run, artificial intelligence could cause massive disruption.”
The Global Catastrophic Risks 2016 report is a join project involving three centres focusing on the study of existential risk: The Global Challenges FoundationThe Global Priorities Project, and Oxford University’s Future of Humanity Institute.
“We don’t expect any of the events that we describe to happen in any 10-year period. They might—but, on balance, they probably won’t,” Sebastian Farquhar, the director of the Global Priorities Project, told The Atlantic. “But there’s lots of events that we think are unlikely that we still prepare for.”



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CEBID - Centro de Estudos em Biodireito

quinta-feira, 31 de março de 2016

Only in Sweden

Ernada Hidanovic and her son Armando, refugees in Sweden / Paul Madej      


The political and policing problems of allowing hundreds of thousands of refugees from Africa, the Middle East, and Afghanistan to plod into Western Europe tend to overshadow the difficulties of settling them into a new and alien society.
On the medical front countries in Western Europe are well prepared to cope with the massive influx, according to the World Health Organization. But inevitably there are exotic health issues. Female genital mutilation is one that has made headlines. One that hasn’t is “resignation syndrome” in refugee children and adolescents in Sweden.
This must be one of the most bizarre medical stories of the past decade, although it has received almost no publicity outside of Sweden. Hundreds of children and teenagers, aged 7 to 19, have been diagnosed with a mysterious ailment which leaves them unable to eat, speak and move. According to an article by Dr Karl Sallin and colleagues in Frontiers of Behavioural Neuroscience, the typical patient is “totally passive, immobile, lacks tonus, [is] withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”.
Unless they are given intensive nursing care, they will die.
And it happens only in Sweden.
In 2014 Swedish medical authorities started calling the phenomenon “resignation syndrome”, but this is just a label, not a solution. All of the affected children are members of ethnic minorities, many of them from former Soviet republics, with a disproportionate share being Uighurs. Many of them have been traumatised by experiencing domestic abuse, witnessing violence or being harassed. But only children from refugee families are affected; unaccompanied children are not.
None of the conventional explanations hold water. It could be a reaction to stress and trauma. It could be a projection of the anxieties of traumatised mothers. But there are 50 million traumatised refugees scattered all over the world. Why does “resignation syndrome” happen only in Sweden?
Dr Sallin proposes a two-fold diagnosis in his article. He argues that the affected children are actually suffering from an old and well-studied ailment: catatonia. They are conscious, but unable to move or respond, even to painful stimuli.
His second point is more controversial. He maintains that it is a kind of mass hysteria. Jean-Martin Charcot, a French neurologist in the late 19th century, was the first to characterise this phenomenon. The symptoms of his patients, mostly women, were recurring fits, often quite bizarre, which seemed to follow a standard path of growing severity.
After ruling out a physical cause, he concluded that the cause was psychological, and the ailment was transmitted by imitating other people’s hysterics. When the symptoms became “unfashionable”, the hysterical fits declined. Sallin believes that symptoms of hysteria evolve over time “through the continuous negotiation between physicians and patients immersed in cultural context”. This leads him to suggest that the refugee children are suffering from a mass psychogenic illness tailored for people in their community, just as in past outbreaks.
So this leads us to the bioethical angle to this strange phenomenon. Publicising the illness in the media may make the public more aware of a pressing public health issue, but it may be spreading it at the same time. And indeed it appears that there was a peak in cases of “resignation syndrome” when it was given extensive coverage in the media.
So Sallin concludes with a morose reflection upon the dilemma that doctors find themselves in. As physicians they are bound to tube-feed their catatonic patients, but caring for them may cause the syndrome to spread even further: “The appeal to culture-bound psychopathology raises an ethical dilemma … by offering treatment, to which there is no alternative, we are also, on another level, causing new cases.” 



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CEBID - Centro de Estudos em Biodireito

terça-feira, 22 de março de 2016

Bioethics and natural law: an interview with John Keown




Bioethics discourse is often divided into two broad categories: utilitarian perspectives and so-called deontological or Kantian approaches to ethics. An alternative viewpoint that receives far less attention is a natural law perspective on ethics and medicine. The natural law approach emphasizes interests or ends common to all members of humanity, and offers a teleological account of morality and human flourishing.
Professor John Keown of Georgetown University’s Kennedy Institute for Ethics recently co-authored a book on natural law with the late Georgetown Professor Alfonso Gómez-Lobo. The book is entitled Bioethics and the Human Goods: An Introduction to Natural Law Bioethics. The Deputy Editor of BioEdge, Xavier Symons, interviewed Professor Keown about his latest work. 
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Xavier SymonsWhat led you to write Bioethics and the Human Goods: An Introduction to Natural Law Bioethics?
John Keown: The book was largely written by my distinguished colleague and friend, the late Professor Alfonso Gómez-Lobo, who held the Ryan Chair in Metaphysics and Moral Philosophy at Georgetown. Before his untimely death at the end of 2011, he had submitted a manuscript to Georgetown University Press. With the kind permission of his widow, and with the approval of the Press, I completed the project, incorporating amendments that he had indicated, in his comments on the referees’ reports, that he wanted to make, and some amendments that I thought appropriate. About a third of the book is material I added to his original manuscript. I thought it important, given the regrettable dearth of introductory books on bioethics from a natural law perspective, that his manuscript should be enlarged, updated and completed
What contribution do you think natural law can make to the field of bioethics?
Natural law has made, and has the potential to make in future, a signal contribution to the ethics of healthcare and to bioethics more broadly conceptualised.  Natural law theory could be described as the most enduring and important moral tradition in Western thought, and it has had a profound influence on Western law, professional medical ethics, and culture.
Many laws and codes of ethics are grounded in the natural law articulation of certain fundamental moral principles that should always be respected, regardless of the consequences. For example, in relation to euthanasia, the prohibition on intentionally killing patients, which is still reflected in the law of the vast majority of jurisdictions, and in the ethics of the World Medical Association, is grounded on one such principle: the principle that it is always wrong intentionally to kill a person, even at that person’s request. 
Unlike other approaches to bioethics, most notably utilitarianism, natural law theory can offer a coherent account of the intrinsic wrongness of treating patients in certain ways, such as intentionally killing them, lying to them, or exploiting them, however beneficial it might be to others or to society to do so.
Moreover, although utilitarianism and ‘principlism’, in their various forms, are undoubtedly dominant in bioethics education today, it is important for students to realise that there is an alternative ethical tradition, one which makes sense of much of contemporary law and professional ethics, and which offers a radically different approach to bioethical reflection. Indeed, it seems to me that no student can understand bioethics (or, indeed, biomedical law) properly without at least a basic grasp of natural law theory. Without such a grasp, they have at best a partial understanding of the field. I fear that the many students of bioethics who are unfamiliar with the natural law tradition do not even know what they do not know.
Unfortunately, although the literature on bioethics is vast, that literature largely either ignores natural law theory, mentions it only in passing, or misunderstands it. There is, therefore, an important and urgent need for this book, and more books like it.  
I have lost count of the number of times I have been asked ‘Could your recommend a clear, introductory book on natural law bioethics, suitable for the college student or the general reader?’ Now, I have a ready answer. Previously, I recommended one or two books like Professor Gómez-Lobo’s Morality and the Human Goods (Georgetown University Press, 2002). However, although that book does touch on a number of bioethical issues (especially abortion and euthanasia), it is more an introduction to natural law ethics rather than natural law bioethics.  Still, it would make an excellent companion volume, and I think students would find it valuable to read it before reading Bioethics and the Human Goods.
Professor John Keown

The book mentions ‘basic goods’ and their importance for natural law theory. What are they and why are they so important?
The starting-point for natural law theory is to ask ‘What is the Good Life?’ It rejects standard utilitarian answers, whether in terms of pleasure or the satisfaction of desires, both of which could be used to justify obviously immoral acts. The answer given by natural law theory is that the Good Life is a life which involves true human fulfilment or flourishing. And what is a truly flourishing life? One in which one participates in the goods of life, health, friendship, knowledge, appreciation of art and beauty, work, play and practical reasonableness. (The precise formulation of basic goods may vary depending on which theorist one reads, but the theorists share the same, basic idea.) These goods are ‘basic’ in the sense that they are not merely instrumental goods, but are ends in themselves, worth pursuing for their own sake, and self-evidently so. (Of course, basic goods like health and knowledge can also be instrumentally valuable, but that does not reduce their worth to mere instrumentality. It is, for example, good for us to know about bioethics, or the history of the American Revolution, or one’s own personal history, even if one never uses that knowledge instrumentally.)
The basic goods form an objective basis for natural law ethics, but they need to be supplemented by intermediate moral principles, intermediate between the basic goods and our judgment about the ethics of particular conduct (‘Is it right for me to tell the patient he is fine when I know he is dying?’ ‘Should I allow the patient’s refusal of consent to prevent me from carrying out harmless and potentially ground-breaking research on her while she is anaethetised?’)  Much of Professor Gómez-Lobo’s book Morality focused on the key principles of ‘care’ and ‘respect’. In Bioethics he reformulates them in terms of ‘beneficence’ and ‘non-maleficence’. In doing so, he recognises the influential ‘four principles’ approach advocated by Professors Tom Beauchamp and Jim Childress, but he explains how those principles are conceived and applied from a natural law, rather than from a principlist, perspective. He rejected the ‘four principles’ approach on the ground that it failed to give a substantive account of the Good. Without such an account, he argued, it is impossible to judge what truly benefits or harms another.
In your book you suggest that, although natural law theory is compatible with major religious traditions, it is not grounded in religion. Can you explain?
Adherents of the great religions will find much in natural law that resonates with their teachings, such as its insistence that all human beings share a fundamental equality-in-dignity, including the most vulnerable, whether babies, people with profound intellectual disabilities, the comatose, the demented, the suffering and the dying.
For example, natural law theory’s opposition to infanticide (in contrast to its endorsement by leading utilitarians) resonates with the long-standing opposition to infanticide in the Judaeo-Christian tradition (in contrast to its endorsement by the ancient Greeks and Romans).  Natural law thinkers reject the ‘dualist’ notion of personhood, in which only some human beings, with certain mental abilities, count as ‘persons’ and others, like babies or elderly folk with severe dementia, do not.  Moreover, natural law theory is the philosophical tradition of the Catholic church.  Further, my brother Professor Damien Keown has, in his many publications, noted similarities between natural law ethics and Buddhist ethics. 
Despite these resonances between natural law theory and teachings of the great religions, however, natural law theory remains a philosophy, not a theology. It traces its origins to pre-Christian Greek thinkers like Aristotle, and is reflected in contemporary human rights documents in what many would describe as our post-Christian world.  Anyone can, and many do, adopt natural law’s absolute prohibitions on, say, torture or euthanasia, without having any religious belief whatsoever. In short, natural law is grounded on reason, not faith.
Is there not some distance between natural law theory and a detailed practical ethics? How can a medical practitioner use it to address thorny ethical issues in clinical practice?
There is always a distance between theory and practice, whichever ethical theory one adopts. But, partly because of the centuries-long history of the natural law tradition, much of the intellectual heavy lifting about its application to practical situations has already been done. That rich storehouse of reflection has shaped our laws and codes of professional ethics, whether in relation to carrying out research on patients, to treating or withholding treatment, and to killing or not killing.
That is not to say that natural law has figured out definitive answers to all the bioethical questions clinicians face in the contemporary world, but many of these questions are largely old questions in a new form. For example, the question of the moral status of the human embryo in vitro may have seemed utterly novel to many, but natural law theorists have been reflecting on the moral status of human embryos in vivo for centuries.  Again, the question whether to withhold or withdraw tube-feeding from a patient in PVS may, again, seem completely new and to require us to invent new ethical principles, but to natural law thinkers the answer lies in applying established ethical criteria which ask whether tube-feeding is a medical treatment and, if so, whether it is disproportionate as being either futile or too burdensome. This is not to suggest that the answers to such questions are easy, and will always attract consensus (even among natural law theorists) but it is to say that even challenging, contemporary bioethical questions can be resolved by the intelligent application of well-established principles.
In any event, we should not forget that most clinicians, most of the time, are not confronted with complex, thorny bioethical issues.  Most bioethical issues they face in everyday practice are fairly easily resolved by the application of established principles and codes of bioethics, such as those requiring informed consent and respect for confidentiality. And those principles and codes often reflect, to a greater or a lesser extent, natural law thinking, which requires respect for the basic rights and equality-in-dignity of each patient, not least the vulnerable, and that patients never be used as a mere means to the good of others. 
What would you say to natural law critics of the ‘new’ natural law theory which has been championed by philosophers like Grisez and Finnis?
Professors Grisez  and Finnis (and their collaborators, not least Professor Boyle) have been largely responsible for the exciting renaissance of natural law theory over the past 35 years or so. They would resist the label ‘new’ natural law on the ground that their theory is but a modern restatement of classical natural law theory. Not all natural lawyers would agree with that, but it seems to me that many of the criticisms are based on misunderstandings of the ‘new’ natural law project. This is one reason I co-edited (with Professor Robert P George of Princeton) a Festschrift in honour of John Finnis, (Reason, Morality and Law: The Philosophy of John Finnis) which was published by Oxford University Press in 2013, to allow both supporters and critics of his new classical theory to engage with him, and him with them.
In any event, college students and health care professionals interested in learning the basics of natural law bioethics may well find disagreements about whether and if so how the new classical theory of natural law differs from the old rather abstract and abstruse, and I would encourage them to start with some of the more introductory books and articles on natural law bioethics, written by scholars including Christopher Kaczor, Christopher Tollefsen, David Oderberg, Luke Gormally, David Jones, Helen Watt  and, of course, the late Alfonso Gómez-Lobo.







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CEBID - Centro de Estudos em Biodireito