Bioética / Bioethics

Bioética. El título de una obra dedicada a temas centrales y estructurantes de una bioética plural y secular, pero también dedicada a una práctica profesional en consonancia con los valores universales de la medicina y de la sociedad. De hecho, los médicos nunca se han enfrentado a dilemas tan profundos en su práctica diaria, dado que los valores tradicionales y atemporales de la ética hipocrática, aunque absolutamente necesarios, son hoy insuficientes para una medicina moderna y atenta al devenir plural de la humanidad. Aspectos divisivos, como la neoeugenesia, la mejora cognitiva, el testamento vital, la biología sintética, la inteligencia artificial, la criogenia de las personas o incluso la selección de embriones evocan algunas de las cuestiones éticas más complejas de las sociedades contemporáneas, por lo que la definición de reglas claras de conducta aparece como un imperativo insuperable. Sin embargo, la importancia de la reflexión ética no solo se encuentra en estos problemas divisivos de la biomedicina contemporánea. Aspectos más tradicionales, pero no menos relevantes, como el secreto médico, el consentimiento informado o la integridad profesional, asumen hoy, más que nunca, una importancia crucial en una sociedad global, fuertemente tecnológica, pero profundamente deshumanizada. Son el garante de que la medicina, tanto ayer como mañana, siempre será considerada una profesión digna y respetable, un arte y una ciencia.

Direct-to-Consumer Genetic Testing: Value and Risk.

Although the explosive growth of direct-to-consumer (DTC) genetic testing has moderated, a substantial number of patients are choosing to undergo genetic testing outside the purview of their regular healthcare providers. Further, many industry leaders have been expanding reports to cover many more genes, as well as partnering with employers and others to expand access. This review addresses continuing concerns about DTC genetic testing quality, psychosocial impact, integration with medical practice, effects on the healthcare system, and privacy, as well as emerging concerns about third-party interpretation services and non-health-related uses such as investigative genetic genealogy. It concludes with an examination of two possible futures for DTC genetic testing: merger with traditional modes of healthcare delivery or continuation as a parallel system for patient-driven generation of health-relevant information. Each possibility is associated with distinctive questions related to value and risk.

Introducing "Precision Health Promotion": The Convergence of Genomics, Health Education, and Lived Experience.

The prospect that modifying just one mutated letter in a genomic sequence could save millions of lives has spawned a growing discipline called personalized medicine (PM). Where PM focuses on bringing greater precision to individual treatments, the genetics revolution also invites questions about how genetics testing and genetics reference panels can be applied in a public health context. Some voice concerns that the growth of PM will shift us back to an emphasis on the medical model for health advancement with undue focus and investment on individual rather than societal solutions. This editorial introduces precision health promotion and defines it as "the personalized design of lived experiences that foster improved health and well-being for individuals within the context of their families, organizations and communities."

Knowledge development, technology and questions of nursing ethics.

This article explores emerging ethical questions that result from knowledge development in a complex, technological age. Nursing practice is at a critical ideological and ethical precipice where decision-making is enhanced and burdened by new ways of knowing that include artificial intelligence, algorithms, Big Data, genetics and genomics, neuroscience, and technological innovation. On the positive side is the new understanding provided by large data sets; the quick and efficient reduction of data into useable pieces; the replacement of redundant human tasks by machines, error reduction, pattern recognition, and so forth. However, these innovations require skepticism and critique from a profession whose mission is to care for and protect patients. The promise of technology and the new biological sciences to radically and positively transform healthcare may seem compelling when couched in terms of safety, efficiency, and effectiveness but their role in the provision of ethical nursing care remains uncertain. Given the profound moral and clinical implications of how today's knowledge is developed and utilized, it is time to reconsider the relationship between ethics and knowledge development in this new uncharted area.

LeRoy Walters's Legacy of Bioethics in Genetics and Biotechnology Policy.

LeRoy Walters was at the center of public debate about emerging biological technologies, even as "biotechnology" began to take root. He chaired advisory panels on human gene therapy, the human genome project, and patenting DNA for the congressional Office of Technology Assessment. He chaired the subcommittee on Human Gene Therapy for NIH's Recombinant DNA Advisory Committee. He was also a regular advisor to Congress, the executive branch, and academics concerned about policy governing emerging biotechnologies. In large part due to Prof. Walters, the Kennedy Institute of Ethics was one of the primary sources of talent in bioethics, including staff who populated policy and science agencies dealing with reproductive and genetic technologies, such as NIH and OTA. His legacy lies not only in his writings, but in those people, documents, and discussions that guided biotechnology policy in the United States for three decades.

What Should a Psychiatrist Know About Genetics? Review and Recommendations From the Residency Education Committee of the International Society of Psychiatric Genetics.

The International Society of Psychiatric Genetics (ISPG) created a Residency Education Committee with the purpose of identifying key genetic knowledge that should be taught in psychiatric training programs. Thirteen committee members were appointed by the ISPG Board of Directors, based on varied training, expertise, gender, and national origin. The Committee has met quarterly for the past 2 years, with periodic reports to the Board and to the members of the Society. The information summarized includes the existing literature in the field of psychiatric genetics and the output of ongoing large genomics consortia. An outline of clinically relevant areas of genetic knowledge was developed, circulated, and approved. This document was expanded and annotated with appropriate references, and the manuscript was developed. Specific information regarding the contribution of common and rare genetic variants to major psychiatric disorders and treatment response is now available. Current challenges include the following: (1) Genetic testing is recommended in the evaluation of autism and intellectual disability, but its use is limited in current clinical practice. (2) Commercial pharmacogenomic testing is widely available, but its utility has not yet been clearly established. (3) Other methods, such as whole exome and whole genome sequencing, will soon be clinically applicable. The need for informed genetic counseling in psychiatry is greater than ever before, knowledge in the field is rapidly growing, and genetic education should become an integral part of psychiatric training.

Somatic individuality in context, a comparative case study.

Scholars have challenged the totalizing nature of the "geneticization thesis," arguing that its brushstrokes are too broad to capture the complicated nature of the new genetics. One such challenge has come from Nikolas Rose's argument that genetic medicine is governed by a new biopolitics in which patients understand themselves as "somatic individuals" who treat their bodies as an "ethical substance" to be worked on in order to secure a healthier future. I argue that Rose's argument, while compelling, paints the new genetics in equally broad brushstrokes and that in order for a concept like somatic individuality to become useful, we must study its manifestation across different communities of at-risk individuals. I undertake such a study by analyzing discourse use in two online biosocial communities, showing how the decision-making situations specific to each affect representations of somatic individuality, often creating opportunities for the rhetorical repurposing of older discourses of genetic determinism.

Medicina e direito: responsabilidade civil, judicialização da saúde, sigilo professional, genética, violência contra a mulher e dignidade na morte. Reflexões e conferências do VII Congresso Brasileiro de Direito Médico, Brasília (DF), 3 e 4 de agosto de 2016 / Medicine and law: civil liability, judicialization of health, professional secrecy, genetics, violence against women and dignity in death. Reflections and conferences of the VII Brazilian Congress of Medical Law, Brasília (DF), August 3 and 4, 2016

Nos dias 2 e 3 de dezembro de 2010, o Conselho Federal de Medicina (CFM) deu início a um projeto exitoso, com foco no aperfeiçoamento da Medicina e do Direito, dois campos de atuação com raízes na Idade Medieval e um mesmo caráter humanístico e humanitário impresso em suas práticas e aprendizados. Assim, com a realização do seu I Congresso Brasileiro de Direito Médico, o CFM passou a estimular a maior interação entre médicos, advogados e juristas, além de especialistas em ética e bioética, que em cada encontro se dedicam a temas de inquestionável relevância para a sociedade. Em 2017, com a realização da sua VII edição, o Congresso Brasileiro de Direito Médico consolidou seu espaço na agenda de eventos nacionais voltados para essas áreas. Não por acaso, esses encontros têm atraído centenas de participantes com a oportunidade de assistirem exposições e debates, que certamente contribuíram para o seu aperfeiçoamento profissional e pessoal. Os textos resultantes do VII Congresso Brasileiro de Direito Médico, ocorrido em 3 e 4 de agosto de 2017, que compõem este volume, permitirão uma maior compreensão dos desafios que se apresentam para o pleno exercício do Direito e da Medicina, no contexto de mudanças das relações em sociedade e das normas éticas e legais.

Genetics and right: a methodology.

The theme of the free availability of genetic information is, by its nature, the heart of attention in most areas of investigation. From biology to medicine, from philosophy to law, from theology to biotechnology there isn't an area of science that cannot be said to be interested in the subject, nor has not, in recent years, tried to deepen it.

Ensaios em bioética / Bioethics essays

A relevância da Península Ibérica para a formação dos povos por ela colonizados é incontestável. O historiador brasileiro Sérgio Buarque de Holanda já pontuava essa importância em texto publicado em 1936. "A Espanha e Portugal são, como a Rússia e os países balcânicos (e em certo sentido também a Inglaterra), um dos territórios-ponte pelos quais a Europa se comunica com os outros mundos. Assim, eles constituem uma zona fronteiriça, de transição, menos carregada, em alguns casos, desse europeísmo que, não obstante, mantêm como um patrimônio necessário", apontou. No caso de Portugal, essa presença se alastrou pela América, África e Ásia, tendo no idioma um traço forte de união. Tanto é que, hoje, cerca de 250 milhões de pessoas no mundo comungam da lusofonia. Angola, Cabo Verde, Guiné-Bissau, São Tomé e Príncipe, Moçambique e Timor-Leste, além de Portugal e Brasil, formam, assim, uma comunidade com raízes profundas, mas que defronta com diferentes desafios no momento em que se rediscutem as bases de uma nova ordem global. Nesse cenário, os textos deste livro, Ensaios em Bioética, nos ajudam a compreender a visão lusófona sobre os fenômenos da contemporaneidade ante a perspectiva de seu impacto nas relações humanas. Bem escrito e com o manejo firme de argumentos, o profícuo autor Rui Nunes ­ professor doutor de grande projeção no debate internacional sobre a bioética ­ seguiu o conselho do moçambicano Mia Couto: "temos de repensar o mundo no sentido terapêutico de o salvar de doenças de que padece. Uma das prescrições médicas é mantermos a habilidade da transcendência, recusando ficar pelo que é imediatamente perceptível. Isso implica a aplicação de um medicamento chamado inquietação crítica"

Confidentiality, informed consent, and children's participation in research involving stored tissue samples: interviews with medical professionals from the Middle East.

Ethical issues regarding research biobanks continue to be a topic of intense debate, especially issues of confidentiality, informed consent, and child participation. Although considerable empirical literature concerning research biobank ethics exists, very little information is available regarding the opinions of medical professionals doing genetics research from the Middle East, especially Arabic speaking countries. Ethical guidelines for research biobanks are critically needed as some countries in the Middle East are starting to establish national research biobanks. Islam is the dominant religion in these countries, and it affects people's behavior and influences their positions. Moreover, communities in these countries enjoy a set of customs, traditions and social norms, and have social and familial structures that must be taken into account when developing research policies. We interviewed 12 medical professionals from the Middle East currently working with stored tissue samples to document their opinions. We found general agreement. Participants' primary concerns were similar to the views of researchers internationally. Since children tend to represent a high percentage of Middle Eastern populations, and because children's bodies are not just small adult bodies, the interviewed professionals strongly believed that it is imperative to include children in biobank research. Participants generally believed that protecting confidentiality is socially very important and that informed consent/assent must be obtained from both adult and child participants. This study provides a starting point for additional studies.

Playing God: the rock opera that endeavors to become a bioethics education tool.

This article describes and introduces a new innovative tool for bioethics education: a rock opera on the ethics of genetics written by two academics and a drummer legend. The origin of the idea, the characters and their development, and the themes and approaches as well as initial responses to the music and the show are described, and the various educational usages are explored.

Epigenetics and the environment in bioethics.

A rich literature in public health has demonstrated that health is strongly influenced by a host of environmental factors that can vary according to social, economic, geographic, cultural or physical contexts. Bioethicists should, we argue, recognize this and--where appropriate--work to integrate environmental concerns into their field of study and their ethical deliberations. In this article, we present an argument grounded in scientific research at the molecular level that will be familiar to--and so hopefully more persuasive for--the biomedically-inclined in the bioethics community. Specifically, we argue that the relatively new field of molecular epigenetics provides novel information that should serve as additional justification for expanding the scope of bioethics to include environmental and public health concerns. We begin by presenting two distinct visions of bioethics: the individualistic and rights-oriented and the communitarian and responsibility-oriented. We follow with a description of biochemical characteristics distinguishing epigenetics from genetics, in order to emphasize the very close relationship that exists between the environment and gene expression. This then leads to a discussion of the importance of the environment in determining individual and population health, which, we argue, should shift bioethics towards a Potterian view that promotes a communitarian-based sense of responsibility for the environment, in order to fully account for justice considerations and improve public health.

Sexual Dimorphism and deviation en the proportion of sexes in preimplantory embryos / Dimorfismo sexual y desviación en la proporción de los sexos en embriones preimplantatorios / Dimorfismo sexual e desvio na proporção dos sexos em embriõespré-implantatorios

Sexual differences in size and morphology are common in the animal kingdom and they have been mainly explained by sexual selection. According to classic theory of sexual determination and differentiation, the morphologic differences between the same specie individuals both different sex starts to show up soon after and as a consequence of the gonads formation and development. However, increasing evidence coincide in signaling that differences between males and females star to be evident long before of gonads formation, from preimplantatory stadium [week 1] or even from zygotic stadium [day 1]. Differences in kinetics of development and in energetic preimplantatory metabolism have been explained by genetic and epigenetic differences which underlie it and, in the case of get persistent, they can take them until disrupting the normal sex ratio. In this review about sexual dimorphism in preimplantatory embryos hypothesis, accumulated evidences and scenarios [in vivo e in vitro] are explored, as well as the last findings and possible changes that will have to be faced by the embryology.

Las diferencias sexuales en tamaño y morfología son comunes en el reino animal y se han explicado principalmente por la selección sexual. De acuerdo con la teoría clásica de la determinación y diferenciación sexual, las diferencias morfológicas entre individuos de la misma especie pero de diferente sexo se empiezan a manifestar poco después ycomo consecuencia de la formación y desarrollo de las gónadas. No obstante, evidencia creciente coincide en señalarque las diferencias entre machos y hembras se comienzan a manifestar mucho antes de la formación de las gónadas, desde el estado preimplantatorio [semana 1] e inclusive desde el estado cigótico [día 1]. Diferencias en la cinética dedesarrollo y en el metabolismo energético preimplantatorio han sido explicadas por diferencias genéticas y epigenéticas que les subyacen y que de persistir pueden llegar hasta afectar la normal proporción de los sexos. En la presente revisión sobre el dimorfismo sexual de embriones preimplantatorios se exploran las hipótesis, las evidencias acumuladas, los escenarios [in vivo e in vitro] y, a la luz de los últimos hallazgos, los posibles cambios que deberá enfrentar la embriología.

As diferenças sexuais no tamanho e morfologia são comuns no reino animal e foi explicado principalmente pelaseleção sexual. De acordo com a teoria clássica da determinação e diferencia sexual, as diferencias morfológicasentre indivíduos da mesma espécie, porém de diferente sexo começam a manifestar pouco depois e comoconsequência da formação e desenvolvimento das gônadas. Contudo, evidencia crescente coincide em assinalar que as diferenças entre machos e fêmeas começam a se manifestar muito antes da formação das gônadas, desde o estadopreimplantatorio [semana 1] e inclusive desde o estado cigótico [dia 1]. Diferenças na cinética de desenvolvimento e no metabolismo energético preimplantatorio foram explicadas por diferenças genéticas e epigenêticas que lhes segueme que de persistir podem chegar até em afetar a normal proporção dos sexos. Na presente revisão sobre o dimorfismosexual de embriões preimplantatorios são exploradas as seguintes hipóteses, as evidencias acumuladas, os cenários[in vivo e in vitro] e, à luz dos últimos descobrimentos, as possíveis mudanças que deverá enfrentar a embriologia.

Delineando fronteiras: reflexão sobre os limites éticos para a aplicação de tecnologias genéticas / Delineating boundaries: reflection on the ethical limits for applying genetic technologies

Este artigo objetiva desenvolver uma reflexão sobre os limites éticos para os usos da engenharia genética em humanos. Para tanto, buscou-se delinear fronteiras éticas entre as duas finalidades para intervençães genéticas: tratamento e melhoramento. Adicionalmente, foi desenvolvido breve retrospecto histórico sobre as investidas eugenistas eclodidas no Brasil, Alemanha e Estados Unidos. Também foram introduzidos argumentos frequentemente empregados contra as intervençães genéticas: a antinaturalidade, o brincar de Deus, a trapaça social, o uso de informaçães genéticas, as implicaçães da manipulação de células germinativas e o recurso lógico às ladeiras escorregadias. O artigo finaliza advertindo para a necessidade do estabelecimento de um debate público sobre o tema, visando propiciar a criação de leis e códigos éticos reguladores da prática científica e médica sobre as tecnologias de manipulação genética. Contudo, tal fato demanda, necessariamente, melhor qualidade de educação e informação da sociedade brasileira, principalmente no âmbito escolar.