Genethics and Human Reproduction: Religious Perspectives in the Academic Bioethics Literature.

The successes of the human genome project and genomics research programs portend great potential to improve upon health and enhance life. As scientific advancements continue, bioethicists and policy makers deliberate over the social and ethical implications of genetic and genomic technologies and information (ggT/I). The application of ggT/I to human reproduction raises conceptual and moral questions about being human and the links between offspring, parents, and society. Given ggT/I's ability to significantly affect the biological constitution of humans and future human generations thinking through such issues is fundamental to ethical and policy analysis. By means of a systematic literature review and accompanying content analysis, this paper highlights the dominant ethical concerns raised within recent bioethics discourse over the use of ggT/I for human reproduction. Based on these findings it aso offers a framework through which, and demarcates where, religious perspectives can add value to genethics debates and policy deliberation.

Derechos fundamentales y ciencias biomédicas: el Ararteko ante los desafíos de la 4ª generación de derechos humanos / Fundamental rights and biomedical sciences: the Ombudsman facing the challenges of the 4th generation of human rights

La división de los derechos humanos en tres generaciones fue inicialmente propuesta por el jurista Karel VASAK en el Instituto Internacional de Derechos Humanos, en Estrasburgo, en 1979. Su división tenía la vocación de seguir las nociones centrales de las tres frases que fueron la divisa de la revolución francesa: Libertad, Igualdad y Fraternidad, que son, a su vez, valores profundamente europeos. Sin embargo, la evolución de la sociedad y la aparición de nuevos problemas complejos que afectan a las personas en su diversidad y los estados han hecho emerger una nueva generación de derechos humanos, llamada la cuarta generación, en pro de dar cabida a las necesidades de protección de esos nuevos derechos derivados de dicha evolución; generación ligada al mundo de la tecnología y también de la bioética, en toda su amplitud y diversidad. El autor, en su condición de actual Ararteko (Defensor del Pueblo del País Vasco) afronta los proyectos e iniciativas frente a esta cuarta generación de derechos humanos. Así, la institución que representa no es ajena a esta realidad y su evolución así como a la progresiva configuración y formalización de los distintos rangos de derechos humanos, que afronta como retos dentro de su rol como Alto Comisionado del Parlamento Vasco para la defensa de los derechos de las personas, en relación con las actuaciones y políticas públicas de la Comunidad Autónoma del País Vasco

The division of human rights into three generations was initially proposed by the jurist Karel VASAK at the International Institute of Human Rights in Strasbourg in 1979. His division had the vocation to follow the central notions of the three phrases that were the motto of the revolution French: Freedom, Equality and Fraternity, which are, in turn, deeply European values. However, the evolution of society and the emergence of new complex problems that affect people in their diversity and states have led to the emergence of a new generation of human rights, called the fourth generation, in order to accommodate the needs of protection of these new rights derived from said evolution; generation linked to the world of technology and also of bioethics, in all its breadth and diversity. The author, current Ararteko (Ombudsman of the Basque Country) faces the projects and initiatives in front of this fourth generation of human rights. Thus, this institution is not alien to this reality and its evolution, as well as to the progressive configuration and formalization of the different ranges of human rights, which it faces as challenges within its role as High Commissioner of the Basque Parliament for the defense of the rights of people in relation to the actions and public policies of the Autonomous Community of the Basque Country

Discusión ética y legal del asesoramiento genético en paciente portadora de una variación patológica en RAD51D / Ethical and legal discussion on genetic counselling in a carrier of a deleterious variation in RAD51D

En el campo de la genética del cáncer, los avances en innovación tecnológica han ayudado a detectar variaciones patogénicas con baja prevalencia en la población en genes que todavía están en investigación, lo que significa que todavía hay poca evidencia científica disponible sobre el riesgo que estas variaciones podrían conllevar en cuanto a la susceptibilidad de desarrollar cáncer. La difícil tarea de asesorar genéticamente e informar del seguimiento, detección precoz y acciones profilácticas de estos casos, como el aquí expuesto, conlleva importantes implicaciones desde el punto de vista ético y legal sobre las que hay muy poco descrito en la literatura (AU)

In the field of the genetics of the cancer, advances in technological innovation have helped to detect low prevalence deleterious variation in genes within the population that still are under investigation. This means that little scientific evidence is available concerning the risk that these variations might constitute as regards the susceptibility of developing cancer. The difficult task of genetically assessing and reporting on the early detection, the prophylactic actions, and follow-up of these cases, as detailed herein, has important implications from an ethical and legal point of view, but hardly anything about them has been discussed in the literature (AU)

Consideraciones éticas en el diagnóstico presintomático de ataxias espinocerebelosas autosómico dominantes / Ethical considerations in presymptomatic diagnosis of autosomal dominant spinocerebellar ataxias

Introducción: Existe información limitada de la realización de diagnóstico presintomático en ataxias espinocerebelosas (SCA) autosómicas dominantes. La llegada del diagnóstico molecular, además de brindar la posibilidad de realizar identificación en pacientes portadores de distintas enfermedades, permitió también la posibilidad de detectar enfermedades incluso antes de su presentación. Esto atrajo la atención sobre las implicaciones éticas que deberían ser consideradas en estos sujetos, con la finalidad de salvaguardar su bienestar físico y psicológico. Desarrollo: La SCA está compuesta por un grupo de trastornos neurodegenerativos con patrón de herencia autosómico dominante. Existen pocas publicaciones que describen el proceso de asesoramiento y los lineamientos considerados durante el proceso de diagnóstico presintomático. El número de integrantes de los equipos multidisciplinarios, sus áreas de especialidad y número de sesiones durante el asesoramiento es variable en cada uno de los trabajos analizados. Sin embargo, las bases para su realización tienen origen en documentos comunes, en los cuales algunos de los autores han participado en fechas más recientes. Conclusiones: El diagnóstico presintomático debe ser realizado bajo lineamientos que salvaguarden el bienestar de los sujetos. Sería recomendable que el diagnóstico de SCA sea realizado solo a pacientes con clínica sugestiva, mayores de 18 años y con un riesgo mínimo del 50%. Deben estar disponibles esquemas de asesoramiento genético en todos aquellos centros que pretenden realizar diagnóstico de SCA antes de la presentación de síntomas (AU)

Introduction: Information on achieving presymptomatic diagnosis of spinocerebellar ataxia (SCA) is limited. The advent of molecular diagnosis makes it possible to identify the carriers of different diseases and has also introduced the prospect of detecting diseases even before their onset. This has drawn attention to the ethical implications that must be considered in these subjects with a view to preserving their physical and psychological well-being. Development: SCA is composed of a group of neurodegenerative disorders with autosomal dominant inheritance. Only a few publications have described the genetic counselling processes and guidelines to be followed during the process of presymptomatic diagnosis (PSD). The size of the multidisciplinary teams, their areas of expertise, and the number of counselling sessions are different for each of the studies analysed here. However, the basis of presymptomatic diagnosis originates in common guidelines to which members of our team have contributed recently. Conclusion: Presymptomatic diagnosis should be performed according to guidelines that safeguard the subjects’ welfare. The diagnostic process is only recommended for patients over 18 years old with symptoms suggesting SCA, and a minimum risk of 50%. Genetic counselling programmes must be available in all centres that offer presymptomatic diagnosis of SCA (AU)

Paradiso y Campanelli c. Italia (II): los casos difíciles crean mal derecho / Paradiso and Campanelli v. Italy (II): hard cases make bad law

La sentencia del TEDH del pasado 24 de enero pone punto y final al asunto Paradiso y Campanelli c. Italia, en que las autoridades italianas declararon en situación de desamparo a un menor que había pasado sus primeros ocho meses de vida con los comitentes, dos cónyuges italianos que habían accedido a la gestación por sustitución con gametos donados en Rusia. La Gran Sala se aparta del razonamiento seguido por la Sec. 2ª y considera que la actuación de las autoridades nacionales no vulnera el art. 8 CEDH. Así, no existe interferencia en la vida familiar de los comitentes y la injerencia en su vida privada se encuentra justificada. Aunque es cierto que una decisión en sentido contrario podría conducir a legalizar situaciones creadas contraviniendo la legislación italiana, el análisis que la Gran Sala realiza de la conducta de las autoridades nacionales presenta varios puntos débiles. Pese a ello, Paradiso (II) es un caso difícil del cual no pueden extraerse conclusiones generales, más allá de confirmar la necesidad de mayor control de una práctica que presenta riesgos claros de explotación

Last January the 27, the Grand Chamber of the European Court of Human Rights delivered its final judgement in Paradiso and Campanelli v. Italy, in which the Italian authorities declared in a state of abandonment a child conceived with donated gametes and gestated in Russia through surrogacy ordered by Italian spouses with whom the child had spent her first eight months of life. The decision, which overturns the previous ruling by the 2nd Section, considers that the national authorities’ behavior does not infringe art. 8 ECHR, since it does not interfere with the commissioning parents’ family life, but constitutes a justified interference with their private life. Although a contrary solution could lead to legalize a situation created by them against the Italian law, the Grand Chamber’s analysis on the national authorities’ behavior contains some weak points. In spite of this, Paradiso (II) is a difficult case from which general readings cannot be inferred but it confirms the need of monitoring a practice which poses serious exploitation risks

'You are inferior!' Revisiting the expressivist argument.

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter-arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the expressivist argument has a wide range of underpinnings and that counter-arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still.

La revolución de la edición genética mediante CRISPR-Cas9 y los desafíos éticos y regulatorios que comporta / CRISPR-Cas9 editing revolution and the its ethical and legal challenges

Tras el descubrimiento del CRISPR-Cas9 como un método extraordinario de edición genética es necesario llevar a cabo una reflexión sobre los aspectos éticos, políticos y legales de esta tecnología. Este trabajo pretende hacer una consideración preliminar de estos problemas. No trata de dar cuenta del potencial del CRISPR-Cas9 en el ámbito de la salud y el medio ambiente, ni de identificar todos los problemas éticos, jurídicos y políticos que puede traer consigo y, menos aún, darles una respuesta. Se centra en identificar los problemas de la aplicación del CRISPR-Cas9 a la línea germinal humana. Para ello, se hace referencia a la regulación internacional que le es aplicable en estos momentos y a la posición que los científicos están adoptando sobre su uso, que en su mayoría se inclinan por la moratoria. El trabajo comienza explicando brevemente en qué consiste el CRISPR-Cas9

After discovering the CRISPR-Cas9 as an extraordinary method for Gene editing it is necessary to reflect on the ethical, political and legal impact of this technology. This work pretends to offer a preliminary consideration of these problems. I do not pay attention to the potential of CRISPR-Cas9 in the fields of health or environment, nor to all the ethical, legal and political challenges it involves. I principally focus the attention on the possibility of using CRISPR-Cas9 to alter the human germ line. There are some rulings on this topic delivered by intergovernmental organizations. There also are some statements from the scientific community on the matter. They are important in order to know the reasons why they propose a moratorium on the use of CRISPR-Cas9 for human germ line editing. I begin the paper with a short explanation on how CRISPR-Cas9 works

An Ethical Analysis of Assisted Reproduction Providers' Websites in Pakistan.

Assisted reproductive technologies (ARTs) and reproductive genetic technologies (RGTs) are intertwined and coevolving. These technologies are increasingly used to fulfill socially and culturally framed requests, for example, "family balancing," or to enable postmenopausal women or homosexual couples to have genetically linked children. The areas of ART and RGT are replete with ethical issues, because different social practices and legal regulations, as well as economic inequalities within and among countries, create vulnerable groups and, therefore, the potential for exploitation. This article provides an overview of the ART and RGT landscape in Pakistan and analyzes the available online content addressing Pakistani citizens and international clients. We explored the topic in view of socioeconomic challenges in Pakistan, particularly deeply rooted poverty, lack of education, gender discrimination, and absence of regulation. As online information given by ART and RGT providers is readily available and could easily raise false hopes, make use of discriminatory statements with regard to women, and promote gender selection to meet sociocultural expectations, it should be subjected to quality control.

Bioderecho y sujeto de derechos. Recategorización jurídica de la manipulación genética no terapéutica en estado embrionario pre-implantacional y del concepto de existencia legal de la persona / No disponible

El rasgo jurídico inédito que la manipulacion genética no terapéutica en estado embrionario despliega, exige un abordaje jurídico-procedimental, hasta ahora inexplorado que, a la vez, demanda la redefinición y ampliación de la estatura legal vinculante de categorías tradicionales del derecho positivo y que alcanzan las fronteras del derecho constitucional, de familia, reparatorio y penal. En este artículo busco demostrar la necesidad de definir un marcojuridico para regular la manipulación genética no terapéutica en estado embrionario preimplantacional que introduce desmejoras o discapacidades que redundan en perjuicios objetivos para un nuevo sujeto de derechos que debiera ser considerado en el mapa juridico: la persona futura. Por ello, pretendo subsanar el vacio legal existente, proponiendo actualizar, ampliar y profundizar los ordenamientos jurídicos iberoamericanos, a través de la recategorizacion jurídica de la manipulación genética no terapéutica y la emergencia de un nuevo sujeto de derechos: la persona futura (AU)

The unprecedented legal implications that non-therapeutic genetic manipulation in pre-implantation embryonic state points out demand a, until now, unexplored approach, which, at the same time, requires the redefinition and extension of legal-binding status of traditional categories of law related to constitutional, restorative, criminal and international law. ln this paper, l will identify and define a juridical framework to regulate non-therapeutic genetic manipulation in pre-implantation embryonic state, specifically when that manipulation introduces deteriorations, disabilities or illnesses, which imply objective harms for a new subject of rights who should be considered in the juridical map: the future person. ln addition, I intend to remedy the existing legal vacuum and loopholes in this matter by proposing to update, expand and deepen international legal systems through the juridical re-categorization of non-therapeutic genetic manipulation and the concept ot legal existence of the person (AU)

El derecho a no saber la información genética. EI caso del País Vasco de reconocimiento a favor de una pareja con antecedentes familiares de Corea de Huntington / No disponible

Una vez analizada brevemente la naturaleza jurídica del derecho a no saber, se describe a continuación un caso clínico, tramitado en 2015 ante el Departamento de Salud del Gobierno del País Vasco, que sirve de ejemplo para reflexionar acerca de la fortaleza de este derecho, singularmente cuando colisiona con los estrictos criterios de financiación de las prestaciones sanitarias (AU)

After analyzing the legal nature of the right not to know, we describe below a case which was conducted in 2015 before the Basque Country Department of Health. This case stands as an example to reflect on the strength of this right, singularly when it clashes with the strict criteria of financing of health care delivery (AU)

The concept of human dignity in the ethics of genetic research.

Despite criticism that dignity is a vague and slippery concept, a number of international guidelines on bioethics have cautioned against research that is contrary to human dignity, with reference specifically to genetic technology. What is the connection between genetic research and human dignity? In this article, I investigate the concept of human dignity in its various historical forms, and examine its status as a moral concept. Unlike Kant's ideal concept of human dignity, the empirical or relational concept takes human dignity as something that is affected by one's circumstances and what others do. I argue that the dignity objection to some forms of genetic research rests on a view of human nature that gives humans a special status in nature - one that is threatened by the potential of genetic research to reduce individuals to their genetic endowment. I distinguish two main philosophical accounts of human nature. One of these, the Aristotelian view, is compatible with the use of genetic technology to help humans realize their inherent potential to a fuller extent.

Stocking the genetic supermarket: reproductive genetic technologies and collective action problems.

Reproductive genetic technologies (RGTs) allow parents to decide whether their future children will have or lack certain genetic predispositions. A popular model that has been proposed for regulating access to RGTs is the 'genetic supermarket'. In the genetic supermarket, parents are free to make decisions about which genes to select for their children with little state interference. One possible consequence of the genetic supermarket is that collective action problems will arise: if rational individuals use the genetic supermarket in isolation from one another, this may have a negative effect on society as a whole, including future generations. In this article we argue that RGTs targeting height, innate immunity, and certain cognitive traits could lead to collective action problems. We then discuss whether this risk could in principle justify state intervention in the genetic supermarket. We argue that there is a plausible prima facie case for the view that such state intervention would be justified and respond to a number of arguments that might be adduced against that view.

Ethics and genetics. A quick view

La Biotecnología, en su sentido más amplio (las tecnologías basadas en la biología), es una de las tecnologías más notables derivada de los conocimientos de mediados del S. XX hasta el S. XXI. En su desarrollo, la biotecnología ha ofrecido la posibilidad de mejorar nuestro conocimiento de las características más íntimas de un ser vivo, es decir, su código genético e incluso, una vez obtenido este conocimiento, ir más adelante y modificarlo. La disciplina que ha llevado a estas transformaciones es la genética y todas las tecnologías basadas en ella. Como mencioné, la capacidad de promover el desarrollo de estas tecnologías se ejerce primero a través del simple conocimiento (información genética) y el segundo a través del cambio de las características genéticas de los individuos (manipulación genética). Dependiendo de las especies involucradas en el proceso biotecnológico, nos referimos a esta manipulación como ingeniería genética (cuando se aplica a otras especies no humanas) o como terapia génica (si se aplica a la especie humana). Todas estas tecnologías tienen cuestiones éticas que deben abordarse, preguntas que han cambiado profundamente el concepto del lugar que ocupa la humanidad en el universo, e incluso, el concepto mismo de humanidad (AU)

Biotechnology, in its wider sense (technologies based on biology), is one of the most striking technologies derived from knowledge appearing in the middle XX and early XXI century. In its development Biotechnology has offered the possibility of improving our knowledge on the most intimate characteristics of a living being i.e. its genetic code and even, once having this knowledge, going a step forward and alter it. The discipline that has prompted these transformations is genetics and all the technologies based on it. As mentioned, the capacity to promote the development of these technologies is exerted first through the simple knowledge (genetic information) and second through changing the genetic characteristics of individuals (genetic manipulation). Depending on the species involved in the biotechnological process we refer to this manipulation as genetic engineering (species other than humans) or as gene therapy (human species). All these technologies have ethical questions to be addressed, questions that have deeply changed the concept of the place humankind occupies in the universe and even the concept of humanity itself (AU)

Desde la Ética a la Bioética / From Ethics to Bioethics

La Bioética está en permanente expansión en lo que se refiere a las nuevas cuestiones morales y jurídicas, pero aún es incipiente en su fundamentación filosófica. Se presenta como una ética nueva para un nuevo hombre, donde las nociones de la ética clásica parecen no justificar las exigencias de las nuevas cuestiones emergentes. Este trabajo aborda la cuestión de las nuevas tecnologías y de sus límites éticos y jurídicos. Se evalúan las contribuciones de dos de los más importantes jus-filósofos contemporáneos, Jürgen Habermas y Ronald Dworkin, estableciendo un posible diálogo entre ellos con aquél que fue uno de los fundadores de la ética clásica, Aristóteles (AU)

Bioethics is in constant expansion to new moral and legal issues, but it is still incipient in its philosophical grounds. It presents itself as a new ethic for a new man, where classical ethics´ notions seem not justify the demands of the new questions raised by bioethics. This paper addresses the issue of new technologies and their ethical and legal boundaries. Assesses the contributions of two of the most important contemporary philosophers, Jürgen Habermas and Ronald Dworkin, establishing a possible dialogue between them and one of the founders of classical ethics, Aristotle (AU)