In this article I examine several criticisms of the concept of vulnerability. Rather than rejecting the concept, however, I argue that a sufficiently rich understanding of vulnerability is essential to bioethics. The challenges of international research in developing countries require an understanding of how new vulnerabilities arise from conditions of economic, social and political exclusion. A serious shortcoming of current conceptions of vulnerability in research ethics is the tendency to treat vulnerability as a label fixed on a particular subpopulation. My (...) paper examines the role of this "label" metaphor in current statements of research ethics. In contrast to this prevailing "label" metaphor, my own positive account of vulnerability develops a dynamic way of understanding the structure of the concept of vulnerability based on the idea of "layers of vulnerability." I examine several cases involving women, as they are sometimes labeled as a vulnerable population and sometimes not. My analysis demonstrates the essential role of this revised concept of vulnerability in bioethics and research ethics. (shrink)

This target article considers the ethical implications of providing prenatal diagnosis (PND) and antenatal screening services to detect fetal abnormalities in jurisdictions that prohibit abortion for these conditions. This unusual health policy context is common in the Latin American region. Congenital conditions are often untreated or under-treated in developing countries due to limited health resources, leading many women/couples to prefer termination of affected pregnancies. Three potential harms derive from the provision of PND in the absence of legal and safe abortion (...) for these conditions: psychological distress, unjust distribution of burdens between socio-economic classes, and financial burdens for families and society. We present Iran as a comparative case study where recognition of these ethical issues has led to the liberalization of abortion laws for fetuses with thalassemia. We argue that physicians, geneticists and policymakers have an ethical and professional duty of care to advocate for change in order to ameliorate these harms. (shrink)

Traditional accounts of vulnerability tend to label entire populations as vulnerable. This approach is of limited utility. Instead, this article utilizes a layered approach to vulnerability, identifying multiple vulnerabilities that older people experience. It focuses on distinguishing the different layers of vulnerability that may be experienced by the elderly in middle-income countries of Latin America. In doing so, I show how the layered approach to vulnerability functions, and demonstrate why it is more interesting and useful than the traditional approach. The (...) article achieves three things. First, it unwraps the different potential layers of vulnerability that develop in old age and the multidimensionality aspects of aging. Second, it reestablishes the usefulness of the concept of vulnerability and explains its functioning. Finally, it shows how different policies can be designed in order to address each vulnerability layer. The layered account promotes a multifaceted approach to public policy analyses and design. In this sense, the layered concept of vulnerability is an appealing concept to consider in public health ethics. (shrink)

In this article, the authors focus on Argentina's activity in the developing field of regenerative medicine, specifically stem cell research. They take as a starting point a recent article by Shawn Harmon (published in this journal) who argues that attempts to regulate the practice in Argentina are morally incoherent. The authors try to show first, that there is no such ‘attempt to legislate’ on stem cell research in Argentina and this is due to a number of reasons that they explain. (...) Second, by examining the role played by different values, conflicting legal and moral views, and the influence of various actors, they attempt to show that the legislative silence regarding stem cell research may not necessarily be a manifestation of a legal/moral disconnection but rather a survival strategy for navigating the long and heated battle on the moral status of the embryo and the kind of treatment it deserves. (shrink)

This book presents some of the challenges bioethics in Latin America faces today. It considers them through the lenses of vulnerable populations, those incapable of protecting their own interests, such as the illiterate, women in societies disrespectful of their reproductive rights, and research subjects in contexts where resources are scarce.

El Foro Global de Bioética en Investigación (GFBR por sus siglas en inglés) se reunió el 3 y 4 de noviembre en Buenos Aires, Argentina, con el objetivo de discutir la ética de la investigación con mujeres embarazadas. El GFBR es una plataforma mundial que congrega a actores clave con el objetivo de promover la investigación realizada de manera ética, fortalecer la ética de la investigación en salud, particularmente en países de ingresos bajos y medios, y promover colaboración entre países (...) del norte y del sur.a Los participantes en el GFBR provenientes de Latinoamérica incluyeron a eticistas, investigadores, miembros de comités de ética y representantes de autoridades sanitarias provenientes de Argentina, Brasil, Chile, Colombia, Ecuador, El Salvador, Guatemala, Honduras, Panamá, Perú, Nicaragua y la República Dominicana. Una legítima preocupación por la protección de las mujeres embarazadas y sus embriones o fetos ha llevado a la mayoría de los países de la Región de las Américas a limitar la realización de estudios con mujeres embarazadas exclusivamente a aquellos estudios específicos sobre el embarazo, y a requerir la exclusión sistemática de las mujeres embarazadas o de las mujeres que quedan embarazadas en el curso del estudio. Ciertamente, a lo largo de la historia de la ética de la investigación, se ha creído erróneamente que proteger a una población es sinónimo de excluirla de los estudios. Se sabe ahora que proceder así implica exponer a riesgos mucho mayores a la población que se busca proteger. El embarazo implica cambios fisiológicos sustantivos e impacta profundamente la manera como el cuerpo metaboliza los medicamentos. Sin embargo, por evitar hacer investigación con mujeres embarazadas, no se ha producido la evidencia científica necesaria para tomar decisiones sobre tratamientos e intervenciones preventivas con dosis eficaces y seguras para ellas y sus embriones o fetos. A manera de ilustración, en el 2001 había en los Estados Unidos apenas más de una docena de medicamentos aprobados para uso en el embarazo (1) y en el 2011 la Food and Drug Administration (FDA) aprobó por primera vez en 15 años un medicamento para su uso en el embarazo (2). Como consecuencia de no haber producido la evidencia necesaria, se pone en riesgo la salud de las mujeres embarazadas cada vez que se les da atención médica. Las mujeres embarazadas se enferman y las mujeres enfermas se embarazan, y no se sabe si los medicamentos que se les da son eficaces o siquiera seguros para ellas y sus embriones o fetos. (shrink)

This paper challenges the traditional account of vulnerability in healthcare which conceptualizes vulnerability as a list of identifiable subpopulations. This list of ‘usual suspects’, focusing on groups from lower resource settings, is a narrow account of vulnerability. In this article we argue that in certain circumstances middle-class individuals can be also rendered vulnerable. We propose a relational and layered account of vulnerability and explore this concept using the case study of cord blood (CB) banking. In the first section, two different (...) approaches to ‘vulnerability’ are contrasted: categorical versus layered. In the second section, we describe CB banking and present a case study of CB banking in Argentina. We examine the types of pressure that middle-class pregnant women feel when considering CB collection and storage. In section three, we use the CB banking case study to critique the categorical approach to vulnerability: this model is unable to account for the ways in which these women are vulnerable. A layered account of vulnerability identifies several ways in which middle-class women are vulnerable. Finally, by utilizing the layered approach, this paper suggests how public health policies could be designed to overcome vulnerabilities. (shrink)

In this article I focus on two issues concerning bioethics in Argentina: reproductive health and ethics in research. Although these topics are quite dissimilar, they share a particular feature: their special relationship with context.

… and the feminists understand perfectly that infertility carries a heavy burden for women. However, they have ambivalent feelings in relation to supporting them in their search for treatments that will resolve their infertility because they feel as if they would be contributing to reinforcing traditional gender roles. It is this tension that has strongly framed the relationship between those who are in favor of these assisted reproductive technologies … and feminists[.]In this essay, I want to explore a new way (...) to think about Assisted Reproductive Technologies (ARTs) in the Latin American context. I will consider a type of infertility that is both preventable and that affects the region’s poorest women. In Latin .. (shrink)

Throughout this essay, I will consider an argument frequently used to justify paternalistic behavior toward a specific class of persons: illiterate people. The argument states that illiterate people are uneducated, lack information and understanding, and are thus unable to make decisions. Therefore, it is argued, paternalism in their case is justified. The conclusion is that illiterate persons cannot be autonomous. The justification for this view is based on an a priori attitude: since it is impossible to communicate, physicians should decide (...) which kind of treatment the illiterate patient should receive. This argument is frequently used even though its proponents may not be aware of its implications. Given the importance and uncritical acceptance this argument has in Argentina, and also in other Latin American countries, I think it is relevant to analyze carefully what it means. I propose a thorough analysis of this argument, of its implications and an evaluation of whether it is acceptable. (shrink)

This short article is a commentary to ‘Vulnerability in Research Ethics: A way forward’ from Margaret Meek Lange, Wendy Rogers and Susan Dodds. In their article they describe and accept my criticisms of the subpopulation approach to vulnerability and my analysis of vulnerability based on layers, but they suggest going beyond it using a taxonomy to classify layers of vulnerabilty. I argue that a) we do not need a taxonomy to classify vulnerabilities, b) the authors do not provide an adequate (...) or successful taxonomy, and c) they are unable to link their taxonomy to specific obligations. Thus I propose avoiding an approach that requires taxonomies, and suggest instead using some characteristics of layers of vulnerability. (shrink)

En este segundo documento nos ocupamos del aborto realizado por motivos terapéuticos o, dicho más brevemente, del aborto terapéutico. En la Argentina, el aborto plantea serios desafíos para la salud pública, ya que, pese a estar prohibido, se practica de forma clandestina y, muchas veces, insegura, poniendo en riesgo la vida y la salud de las mujeres. Por esta razón, creemos que la sociedad y el Estado deben debatir este problema y encontrar soluciones que resguarden los derechos de las mujeres. (...) El artículo 86, inciso 1, del Código Penal argentino expresamente despenaliza el aborto cuando corre peligro la vida o la salud de la mujer. En estos casos, se habla de aborto terapéutico. Esta disposición legal no suele aplicarse ni por los médicos ni por los profesionales que trabajan en la justicia, ya sea por desconocimiento o por razones ideológicas. Más aún, en muchos casos, las interpretaciones del Código Penal se apartan de su letra y restringen arbitrariamente su aplicación. Por estas razones, nos parece importante analizar este problema y proveer información sobre los aspectos legales y éticos involucrados en el aborto terapéutico en la Argentina. Este documento comienza con el relato de un caso hipotético, elaborado a partir de experiencias reales, con el objetivo de acercar al público a una situación concreta. Intercaladas en el cuerpo del relato, se desarrollan algunas reflexiones acerca de las implicaciones médicas, éticas y legales del caso. A continuación, se presenta un apartado referido al marco legal en el que se deben encuadrar los casos de aborto no punible. El documento sigue con una serie de breves recomendaciones destinadas tanto a los profesionales que trabajan en el sistema judicial como a los profesionales de la salud. Por último, se incluye un apéndice que contiene los principios que rigen la interpretación en materia penal y el glosario médico y legal, donde se pueden buscar las palabras resaltadas a lo largo del documento. (shrink)

This article presents some of the ethical and theoretical problems that reproductive decisions pose. I considerer the difficult situation of HIV infected women who have to decide whether to begin or continue pregnancy, knowing about the possibility of transmitting the infection. Could reproductive freedom be limited? I discuss, among others, Parfit, Harris and Purdy´s proposals. I try to show that a paternalistic solution is inadequate and argue on behalf of the importance of responsible and informed decisions on the part of (...) the mother or the parents. (shrink)

This article examines the problems that research ethics confronts in developing countries and the impact that research in developing countries has had on research ethics. In order to show this it analyzes the first paradigmatic cases that gave rise to the ‘classic’ analysis of research ethics. Hence, in this article, many of the ethical concerns apply wherever research is conducted and are not particular to developing countries. Secondly, the article describes the complex process of research by analyzing different research actors (...) and their interests in the current research process. Thirdly, it sketches some of the recent cases that have prompted fierce ethical debate surrounding research in developing countries. (shrink)

In this paper I analyse changes AIDS brought to research with human beings . One of the issues I consider is the relevance of ethical codes to these new proposals in research and if we are justified to think this implies a new paradigm in research . I evaluate some of the arguments activits of AIDS have done, the relevance of considering informed consent as the only criterium and I give special importance to the benefit-risk evaluation as one of the (...) necessary conditions for research work. (shrink)