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1.
Rev. bioét. derecho ; (47): 43-54, nov. 2019.
Artigo em Espanhol | IBECS | ID: ibc-184865

RESUMO

En este trabajo se plantean algunas reflexiones respecto de la edición genética y su impacto en la responsabilidad. Me centraré en la investigación y en las prácticas que se realizan en línea germinal, ya que son las que más preocupan a nuestra sociedad. Aunque estas tecnologías no generan problemas realmente novedosos, cuestionan el alcance de nuestra noción tradicional de responsabilidad y nos plantean nuevos desafíos respecto de cómo afrontarlas. Podemos pensar la responsabilidad de manera individual, en tanto progenitores, a la hora de decidir respecto de nuestra descendencia. Pero también se puede plantear una responsabilidad colectiva: por ejemplo, en tanto científicos a la hora de regular la ciencia, o en tanto sociedad. En este último sentido pareciera que deberíamos considerar cómo estas tecnologías puedan afectar el sistema público de acceso al cuidado de la salud así como también tener en cuenta si determinados grupos de pacientes corren el riesgo de ser postergados sin olvidar cuál pueda ser el impacto en las futuras generaciones


En aquest treball es plantegen algunes reflexions respecte de l'edició genètica i el seu impacte en la responsabilitat. Em centraré en la recerca i en les pràctiques que es realitzen en la línia germinal, ja que són les que més preocupen la nostra societat. Encara que aquestes tecnologies no generen problemes realment nous, qüestionen l'abast de la nostra noció tradicional de responsabilitat i ens plantegen nous desafiaments respecte de com afrontar-les. Podem pensar la responsabilitat de manera individual, en tant progenitors, a l'hora de decidir respecte de la nostra descendència. Però també es pot plantejar una responsabilitat col•lectiva: per exemple, en tant que científics a l'hora de regular la ciència, o en tant que societat. En aquest últim sentit hauríem de considerar com aquestes tecnologies poden afectar el sistema públic d'accés a la salut així com també tenir en compte si determinats grups de pacients corren el risc de ser postergats sense oblidar quin pugui ser l'impacte en les futures generacions


In this article I would like to examine gene editing and its impact on responsibility. I will focus on germ line’ research and practice. Though these technologies do not raise novel issues, they make us re-think the scope of traditional responsibility. I will examine responsibility from an individual perspective: for example our role as parents and the impact of our decisions on our descendants. I will also examine responsibility from a collective perspective: scientists should examine how to regulate these technologies. In addition, as a society we should address how these technologies may affect public access to health care, or if groups of patients might be overlooked. We should also think the impact gene editing may have on future generations


Assuntos
Humanos , Edição de Genes/ética , Responsabilidade Social , Células Germinativas , Sistemas de Saúde/legislação & jurisprudência , Sistemas de Saúde/organização & administração , Tecnologia/legislação & jurisprudência , Direitos Humanos/legislação & jurisprudência
2.
Vaccine ; 2019 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-31060949

RESUMO

Zika virus, influenza, and Ebola have called attention to the ways in which infectious disease outbreaks can severely - and at times uniquely - affect the health interests of pregnant women and their offspring. These examples also highlight the critical need to proactively consider pregnant women and their offspring in vaccine research and response efforts to combat emerging and re-emerging infectious diseases. Historically, pregnant women and their offspring have been largely excluded from research agendas and investment strategies for vaccines against epidemic threats, which in turn can lead to exclusion from future vaccine campaigns amidst outbreaks. This state of affairs is profoundly unjust to pregnant women and their offspring, and deeply problematic from the standpoint of public health. To ensure that the needs of pregnant women and their offspring are fairly addressed, new approaches to public health preparedness, vaccine research and development, and vaccine delivery are required. This Guidance offers 22 concrete recommendations that provide a roadmap for the ethically responsible, socially just, and respectful inclusion of the interests of pregnant women in the development and deployment of vaccines against emerging pathogens. The Guidance was developed by the Pregnancy Research Ethics for Vaccines, Epidemics, and New Technologies (PREVENT) Working Group - a multidisciplinary, international team of 17 experts specializing in bioethics, maternal immunization, maternal-fetal medicine, obstetrics, pediatrics, philosophy, public health, and vaccine research and policy - in consultation with a variety of external experts and stakeholders.

3.
BMC Med ; 17(1): 84, 2019 04 29.
Artigo em Inglês | MEDLINE | ID: mdl-31030670

RESUMO

BACKGROUND: It is critically important to conduct research on stigmatized conditions, to include marginalized groups that experience stigma, and to develop interventions to reduce stigma. However, such research is ethically challenging. Though superficial reference is frequently made to these widely acknowledged challenges, few publications have focused on ethical issues in research on stigmatized groups or conditions. In fact, a brief literature review found only two such publications. MAIN TEXT: At a recent Science of Stigma Reduction workshop comprising 60 stigma researchers from the USA and low and middle-income countries, the need for more robust and critical discussion of the ethics of the research was highlighted. In this paper we describe, illustrate through cases, and critically examine key ethical challenges that are more likely to arise because a research study focuses on health-related stigma or involves stigmatized groups or conditions. We examine the ethics of this research from two perspectives. First, through the lens of overprotection, where we discuss how the perception of stigma can impede ethical research, disrespect research participants, and narrow the research questions. Second, through the lens of research risks, where we consider how research with stigmatized populations can unintentionally result in harms. Research-related harms to participants include potential breaches of confidentiality and the exacerbation of stigma. Potential harms also extend to third parties, including families and populations who may be affected by the dissemination of research results. CONCLUSIONS: Research with stigmatized populations and on stigmatized conditions should not be impeded by unnecessary or inappropriate protective measures. Nevertheless, it may entail different and greater risks than other health research. Investigators and research ethics committees must be particularly attentive to these risks and how to manage them.


Assuntos
Comitês de Ética em Pesquisa/ética , Saúde Global/ética , Estigma Social , Humanos , Projetos de Pesquisa
4.
Dev World Bioeth ; 19(2): 86-95, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30058768

RESUMO

"Vulnerability" is a key concept for research ethics and public health ethics. This term can be discussed from either a conceptual or a practical perspective. I previously proposed the metaphor of layers to understand how this concept functions from the conceptual perspective in human research. In this paper I will clarify how my analysis includes other definitions of vulnerability. Then, I will take the practical-ethical perspective, rejecting the usefulness of taxonomies to analyze vulnerabilities. My proposal specifies two steps and provides a procedural guide to help rank layers. I introduce the notion of cascade vulnerability and outline the dispositional nature of layers of vulnerability to underscore the importance of identifying their stimulus condition. In addition, I identify three kinds of obligations and some strategies to implement them. This strategy outlines the normative force of harmful layers of vulnerability. It offers concrete guidance. It contributes substantial content to the practical sphere but it does not simplify or idealize research subjects, research context or public health challenges.

6.
Artigo em Espanhol | PAHO-IRIS | ID: phr-34870

RESUMO

La reunión anual del Foro Global de Bioética en Investigación (GFBR, por sus siglas en inglés) se llevó a cabo en Bangkok, Tailandia, el 28 y 29 de noviembre 2017 y trató sobre la ética de los diseños y métodos alternativos de ensayos clínicos en países de bajos y medianos ingresos. En esta reunión se discutieron otras formas de generar evidencias tales como los ensayos aleatorizados por conglomerado (cluster randomized trials), que consisten en la asignación al azar de grupos en lugar de individuos independientes a una intervención, aquellos en los cuales una intervención se agrega a los conglomerados de manera escalonada (stepped wedge); los ensayos con plataformas adaptativas (adaptative platforms), que permiten modificaciones al ensayo o procedimientos estadísticos del ensayo después de su inicio, sin menoscabar su validez e integridad; y los modelos con infecciones controladas en seres humanos (controlled human infection models o CHIM)...


Assuntos
Bioética , Ética , Ensaios Clínicos como Assunto , Ebolavirus , África Ocidental
8.
Bioethics ; 31(8): 575-581, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28901598

RESUMO

This article focuses on the initial reactions to the Zika epidemic by national and international public health agencies. It presents and analyzes some responses public officials made about sexual and reproductive health at the inception of the epidemic. It also describes the different challenges and obligations faced by local and international public health agencies, as these have not been clearly outlined. The article argues that these agencies have different obligations and should fulfill them despite existing obstacles. While international agencies should honor their leadership role and make recommendations at a meta-level, local agencies should provide, in the case of Zika, a framework for empowerment and grant women the freedom to achieve sexual and reproductive health so that they can avoid the consequences of this epidemic.


Assuntos
Direitos Humanos , Saúde Pública , Saúde Reprodutiva/ética , Direitos Sexuais e Reprodutivos/ética , Zika virus , Feminino , Humanos , Microcefalia , Infecção por Zika virus
11.
Cad Saude Publica ; 32(5)2016 06 03.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-27276695
12.
Rev. bioét. derecho ; (36): 5-22, 2016.
Artigo em Espanhol | IBECS | ID: ibc-149260

RESUMO

Este artículo analizará ciertas problemáticas sexuales y reproductivas en poblaciones que han sido tradicionalmente postergadas. Se pasará revista a la actual legislación del aborto, a leyes que atañen a las personas lesbianas, gay, bisexual y transgénero (LGBT) respecto del matrimonio igualitario y la identidad de género y a la legislación recientemente sancionada respecto de las técnicas de reproducción asistida (TRA). En estos tres casos se enfrentaron serios desafíos para su regulación. El artículo explicitará que aunque algunas legislaciones son sumamente progresistas e innovadoras, aquellas que conciernen al aborto mantienen el estatus quo y una mirada conservadora. Se argumentará que en la Argentina existe un notable doble estándar en relación a las mujeres y sus derechos sexuales y reproductivos. Y que hay una discriminación muy fuerte, especialmente, hacia las mujeres pobres. Éstas son postergadas, silenciadas y olvidadas (AU)


This article examines the direction the laws have taken in three related "non-traditional" areas. The first one will consider the current situation of abortion, the second will analyze the legislative changes concerning some marginalized populations - the Lesbian, Gay, Bisexual and Transgender (LGBT) collective. It will focus on same sex marriage and gender identity. Finally it will consider a set of practices that has also been highly questioned and faced significant legal challenges as assisted reproductive technologies (ARTs). The article will show that even if in recent years some of these legislations are innovative and respectful of human rights, those regarding abortion maintain status quo and continue endorsing a conservative view. Thus it will argue that there is a double‐standard towards the sexual and reproductive rights of women. This is specially the case for scarce resources women who are postponed, silenced and forgotten (AU)


Assuntos
Humanos , Masculino , Feminino , Direitos Sexuais e Reprodutivos/legislação & jurisprudência , Aborto , Homossexualidade , Técnicas de Reprodução Assistida/legislação & jurisprudência , Argentina , Grupos Minoritários/legislação & jurisprudência , Direitos Sexuais e Reprodutivos , Discriminação Social , Casamento/legislação & jurisprudência
14.
Int J Technoethics ; 6(2): 47-59, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-30637090

RESUMO

Globalization shrinks the world. The world watches on television people dying of hunger or in extreme poverty conditions. Every year, 8 million children die before they reach the age of 5 from preventable diseases. "Exotic illnesses" cease to be so exotic, they can cross borders easily. Ebola, originally an African worry, in 2014 was an international threat. The revolution in information technologies enables us witness the emergence of transnational epistemic communities exhibiting, measuring and explaining health and disease. Presently, the authors are more aware than ever of the health problems of people from far away countries, which decades ago were unknown and distant. The transparency and availability of this information exhibits, in a quasi-obscene way, an unacceptable world. A world that is willing to rescue banks and ignores the worst off - those people whose unlucky birth seals a never ending cycle of misery with almost no possibility of breaking it. This paper address the situation just described by asking: Are these new empiric circumstances reflected in the authors' moral understanding of the issues? How should the world think of global health and their obligations towards people living in deprivation? How can the new empiric possibilities the global world offers be related to the implementation of such obligations? What are some of the challenges to the translation of new obligations to the present world? In addressing these questions, the paper argues that if the world seriously wants to address the obligations towards those in need, even if they are far away from the places they may need to work not only with ideal proposals such as the "new obligations" pointed by Singer and Pogge, but also with different transitional theories and non-ideal strategies in order to solve some of the big challenges the real world impose to theories.

15.
J Med Ethics ; 41(1): 129-33, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25516954

RESUMO

Doing 'good medical ethics' requires acknowledgment that it is often practised in non-ideal circumstances! In this article I present the distinction between ideal theory (IT) and non-ideal theory (NIT). I show how IT may not be the best solution to tackle problems in non-ideal contexts. I sketch a NIT framework as a useful tool for bioethics and medical ethics and explain how NITs can contribute to policy design in non-ideal circumstances. Different NITs can coexist and be evaluated vis-à-vis the IT. Additionally, I address what an individual doctor ought to do in this non-ideal context with the view that knowledge of NITs can facilitate the decision-making process. NITs help conceptualise problems faced in the context of non-compliance and scarcity in a better and more realistic way. Deciding which policy is optimal in such contexts may influence physicians' decisions regarding their patients. Thus, this analysis-usually identified only with policy making-may also be relevant to medical ethics. Finally, I recognise that this is merely a first step in an unexplored but fundamental theoretical area and that more work needs to be done.


Assuntos
Teoria Ética , Ética Médica , Princípios Morais , Tomada de Decisões , Humanos , Formulação de Políticas
17.
Rev. bioét. derecho ; (n.extr): 99-106, 2015.
Artigo em Espanhol | IBECS | ID: ibc-146195
19.
J Empir Res Hum Res Ethics ; 9(2): 80-91, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24782074

RESUMO

The landscape in research ethics has changed significantly in Latin America and the Caribbean over the past two decades. Research ethics has gone from being a largely foreign concept and unfamiliar practice to an integral and growing feature of regional health research systems. Four bioethics training programs have been funded by the Fogarty International Center (FIC) in this region in the past 12 years. Overall, they have contributed significantly to changing the face of research ethics through the creation of locally relevant training materials and courses (including distance learning), academic publications, workshops, and conferences in Spanish, and strengthening ethics review committees and national systems of governance. This paper outlines their achievements and challenges, and reflects on current regional needs and what the future may hold for research ethics and bioethics training in Latin America and the Caribbean.


Assuntos
Bioética/educação , Ética em Pesquisa/educação , Cooperação Internacional , Desenvolvimento de Programas , Pesquisa/educação , Currículo , Comitês de Ética em Pesquisa , Humanos , América Latina , Índias Ocidentais
20.
Perspect. bioét ; 18(34): 97-127, ene.-jun. 2013.
Artigo em Espanhol | BINACIS | ID: bin-130143

RESUMO

La problemática de los bancos de sangre de cordón umbilical, y en particular, la colecta de sangre del cordón umbilical plantea una serie de cuestiones científicas, médicas, éticas y de salud pública. En la Argentina existe un desconocimiento generalizado sobre qué es dicha colecta, para qué se puede realizar, y qué resultados se esperan de ella. Se relata un caso, elaborado a partir de experiencias reales, cuyo objetivo es que el lector se acerque a la problemática desde una situación concreta


Assuntos
Humanos , Feminino , Bancos de Sangue/ética , Cordão Umbilical , Temas Bioéticos , Argentina , Relatos de Casos
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