UNESCO Chair in Bioethics and Human Rights

Chapter: "EU Citizens’ Rights and Responsibilities", in the Trainer's Manual p.22-26
Project: CivicAL (co-funded by the Erasmus+ Programme of the European Union)
Project No: 2018-1-ES01-KA204-050988
https://www.facebook.com/Civicalproject
https://www.unescobiochair.org/wp-content/uploads/2021/07/Trainers-handobook-Eng.pdf

MODULE DESCRIPTION
Being aware that there is a significant demand from the European Union agenda to have active citizenship, this module will address the EU citizens’ rights and responsibilities in three main areas of study: firstly, the human rights and basic needs of every human being; secondly, rights and their related responsibilities, and finally, rights and responsibilities in the European Union.
Considering the Universal Declaration of Human Rights of the United Nations, The Lisbon Treaty, and Maslow’s Theory of Human Motivation, adult learners of disadvantaged groups will be able to understand their main rights and duties within the European Union.

This article focuses on the role of Human Rights (HR) and Sustainable Development Goals (SDGs) in the global governance of new technologies for human health. The first part addresses governance: the process of governing different issues of collective life, including multiple actors and means. The second part discusses the global governance of new technologies: the need, the feasibility and what it should look like. The third part reflects on the global governance of new technologies for human health, analysing the recent WHO plans for global governance of human genome editing and artificial intelligence for health. It concludes that good procedure is insufficient for good governance; ethical content is crucial. Special attention to the role of HR and SDGs is recommended. Proactive ethics is proposed throughout the whole process (conceptualisation, design, development, distribution, and use) of new technologies, which requires ethical education for the different stakeholders.

Keywords: technology, global governance, human rights, sustainable development goals.

El presente artículo se centra en el papel de los Derechos Humanos (DH) y Objetivos de Desarrollo Sostenible (ODS) en la gobernanza mundial de las nuevas tecnologías para la salud humana. La primera parte aborda la gobernanza: el proceso de gobernar diferentes asuntos de la vida colectiva, incluyendo múltiples actores y medios. La segunda parte trata de la gobernanza mundial de las nuevas tecnologías: la necesidad, la viabilidad y cómo debería ser. La tercera parte reflexiona sobre la gobernanza mundial de las nuevas tecnologías para la salud humana, analizando los recientes planes de la Organización Mundial de la Salud (OMS) para la gobernanza mundial de la edición del genoma humano y de la inteligencia artificial (IA) para lasalud. Se concluye que un buen procedimiento es insuficiente para una buena gobernanza, el contenido ético es crucial. Se recomienda prestar especial atención al papel de los DH y los ODS. Se sugiere una ética proactiva a lo largo de todo el proceso (conceptualización, diseño, desarrollo, distribución y uso) de las nuevas tecnologías, implicando la educación ética de las diferentes partes interesadas.

Palabras clave: tecnología, gobernanza mundial, derechos humanos, objetivos de desarrollo sostenible.

A concept that used to belong to the computer world (hacking) is now connected to life (bio) sciences. With no great difficulty, life is being conceived as a set of data, DNA as a code, the body as a machine, and the mind as software… all able to be read, manipulated, and now even hacked. But manipulated by whom? Biohackers and DYIbio (do-it-yourself biology) communities want biotech to be available to anyone, and the information to be openly shared. In this work, I propose a reflection about what is happening and why it might be happening. In the first part, I present biohacking as a social phenomenon, giving some examples of biohackers and differentiating types of biohackers. In the second part, I address Transhumanism. The existence of biohackers is only possible thanks to the increasing availability of information and biotechnology combined with a certain mentality. My main objective is to deepen the reflection upon the relationship between biohacking and Transhumanism. I analyse biohacking as one of the expressions of this movement and one of the phenomena that contributes to it. In the end, I offer a reflection on the culture, desires, and fears of our society and acknowledge some of the questions they provoke.

Keywords: biohacking, DYIbio, enhancement, transhumanism, social phenomena.

Excerpt from my doctoral dissertation in Bioethics.

The aim of this extract (Part 1 of the dissertation) was to find common themes between Transhumanism and the Global Governance of Human Genome Editing (HGE). To achieve this, I applied the Reflexive Thematic Analysis (RTA) method to a set of texts on Transhumanism and a set of texts on the global governance of HGE.
The selected texts to represent Transhumanism in this research were the three documents Humanity+ calls the “original documents on transhumanism”:
• The Transhumanist Declaration
• Transhumanist FAQ 3.0
• The Transhumanist Manifesto v.4
The selected texts to represent the global governance of HGE were the three documents published by WHO on the topic in 2021, the only global plan for the governance of HGE to date:
• Human genome editing: a framework for governance
• Human genome editing: recommendations
• Human genome editing: position paper
As a result of my application of RTA, I found three common themes and their elements.
In the complete dissertation, Part 2 is dedicated to the implications of these common themes for today's Bioethics, especially by working on some examples of tasks for bioethicists.

This article explores the implications for bioethics of the common themes between transhumanism and the global governance of human genome editing (HGE). First, the reflexive thematic analysis (RTA) method was applied to a set of texts on transhumanism and a set of texts on the global governance of HGE. As a result of this application of RTA, three common themes emerged and their elements. After that, an example of implication for bioethics of each one of the common themes was developed. Each implication considers the current situation and a task for bioethics. Finally, it is concluded that recognising the situation arising from the common themes and working on the three identified tasks is crucial for contemporary bioethics.

Keywords:  transhumanism,  global governance,  human genome editing, RTA, bioethics.

Un concepto que antes pertenecía al mundo de la informática (hacking) ahora está relacionado con las ciencias de la vida (bio). Sin grandes dificultades, la vida se concibe como un conjunto de datos, el ADN como un código, el cuerpo como una máquina y la mente como un software... todo ello susceptible de ser leído, manipulado y ahora incluso pirateado. ¿Pero manipulados por quién? Las comunidades de biohackers y DYIbio (do-it-yourself biology) quieren que la biotecnología esté al alcance de cualquiera, y que la información se comparta abiertamente. En este trabajo propongo una reflexión sobre lo que está ocurriendo y por qué puede estar ocurriendo. En la primera parte, presento el biohacking como fenómeno social, dando algunos ejemplos de biohackers y diferenciando los tipos de biohackers. En la segunda parte, abordo el transhumanismo. La existencia de biohackers sólo es posible gracias a la creciente disponibilidad de información y biotecnología combinada con una cierta mentalidad. Mi principal objetivo es profundizar en la reflexión sobre la relación entre el biohacking y el Transhumanismo. Analizo el biohacking como una de las expresiones de este movimiento y uno de los fenómenos que contribuyen a él. Al final, ofrezco una reflexión sobre la cultura, los deseos y los miedos de nuestra sociedad y reconozco algunas de las cuestiones que provocan.

Interactive presentation: https://view.genially.com/6658a592e8bc3500145d5bc5

Resumen: Este trabajo tiene como objetivo hacer un ejercicio de interdisciplinariedad entre la edición de genes y la teología, especialmente considerando la encíclica Laudato Si’. Se busca una razón abierta en doble dirección: genética abierta a la teología y teología abierta a los conocimientos genéticos. Para eso, en primer lugar, se analiza cómo la edición genética puede alargar sus horizontes y dejarse interpelar por las reflexiones de la Laudato Si’. Se ofrece un paralelo sobre los diez ejes que atraviesan la Laudato Si’ y la gobernanza global de la edición genética. En segundo lugar, se plantea cómo la teología, conforme observada en la Laudato Si’, puede expandir aún más sus horizontes y enriquecerse con las posibilidades de la edición de genes. Concretamente, se consideran los seis números de esta carta encíclica que hablan directamente sobre la genética. Posteriormente se presentan algunos temas relacionados a la edición genómica no contemplados en la Laudato Si’, como la des-extincción de algunas especies, uso de gene drives en especies transmisoras de enfermedades, edición de genes de animales con finalidad de trasplantes, avances en híbridos y quimeras, aumento de biohackers. Los resultados de una razón abierta tanto de parte de la edición genómica como de parte de la teología aportan preguntas nuevas y cruciales que nacen del encuentro de dichos saberes.

Gene editing and Laudato Si’: a two-way expanded reason
Abstract: This paper aims to do an interdisciplinary exercise between gene editing and theology, especially considering the encyclical Laudato Si'. It seeks an expanded reason in a two-way direction: genome editing open to theology, and theology open to genetic knowledge. First, this research analyses how gene editing can broaden its horizons and allow itself to be challenged by Laudato Si's reflections. A parallel is drawn between the ten axes of Laudato Si' and the global governance of gene editing. Secondly, this work discusses how theology, as observed in Laudato Si', can further expand its horizons and be enriched by the possibilities of gene editing. Specifically, the six numbers of this encyclical letter that speak directly about genetics are considered. Subsequently, some issues related to gene editing not covered in Laudato Si' are presented, such as the de-extinction of some species, the use of gene drives in disease-transmitting species, gene editing in animals for transplantation, advances in hybrids and chimaeras, the rise of biohackers. The results of open reason on the part of both gene editing and theology bring new and crucial questions that arise from the encounter of these two fields of knowledge.

Interactive Presentation: https://view.genially.com/668046c585304400145acc72

Subject Topics:
-gene editing technologies
-types of human genome editing (somatic, germline, and heritable, along with their subdivisions)
-limitations of the therapy vs enhancement paradigm
-governance of human gene editing
-different values and ethical arguments
-challenges and tasks for today's Bioethics

This book:
-discusses the WHO framework for global governance of human genome editing
-includes commonalities between Transhumanism and WHO framework for governance of human genome editing
-invites the audience toward more proactive and constructive Bioethics
-criticises "therapy vs enhancement" and proposes a more suitable paradigm for bioethical analysis
-offers key elements for the bioethical evaluation of each type of human genome editing

This paper aims to do an interdisciplinary exercise between gene editing and theology, especially considering the encyclical Laudato Si’. It seeks an expanded reason in a two-way direction: genome editing open to theology, and theology open to genetic knowledge. First, this research analyses how gene editing can broaden its horizons and allow itself to be challenged by Laudato Si’s reflections. A parallel is drawn between the ten axes of Laudato Si’ and the global governance of gene editing. Secondly, this work discusses how theology, as observed in Laudato Si’, can further expand its horizons and be enriched by the possibilities of gene editing. Specifically, the six numbers of this encyclical letter that speak directly about genetics are considered. Subsequently, some issues related to gene editing not covered in Laudato Si’ are presented, such as the de-extinction of some species, the use of gene drives in disease-transmitting species, gene editing in animals for transplantation, advances in hybrids and chimaeras, the rise of biohackers. The results of open reason on the part of both gene editing and theology bring new and crucial questions that arise from the encounter of these two fields of knowledge.

Tomar decisões criticamente fundamentadas entre o que podemos fazer e o que devemos evitar, ou o que é melhor fazer quando surgem alguns dilemas é crucial para o discernimento ético e político. A legitimidade das decisões humanas sobre as aplicações da ciência e da tecnologia para promover a vida, a saúde e o bem-estar dos povos é possível graças à cooperação internacional e à proteção do direito como instrumento de proteção e garantia do bem comum, da dignidade e bens fundamentais da pessoa, isto é, o que chamamos de direitos humanos. A Bioética Global propõe uma articulação adequada entre as questões bioéticas e os direitos humanos como paradigma ético universal que deve ser levado em consideração nas decisões, públicas e privadas, no campo das ciências da vida e da saúde. O desafio ético e político é saber como equilibrar o interesse legítimo da indústria por lucros e o desenvolvimento econômico com inovação científica e tecnológica prudente e para o bem das pessoas e comunidades. O reconhecimento mútuo está na base da relação que nos permite dar a cada um o que é seu e promover a convivência pacífica na nossa casa comum. Se realizada de acordo com os imperativos morais de solidariedade e justiça, atentando para a minimização das distâncias entre pobres e ricos e entre as regiões sul e norte, a ciência e a tecnologia contribuirão para o desenvolvimento humano de forma eficaz e éticamente sustentável.

Los derechos humanos como categoría jurídica de textura abierta. 2. Los embriones clónicos son seres humanos. 3. Los embriones clónicos poseen una dignidad humana inherente.-VII. SOBRE LA JUSTICIA DE UNA LEY QUE PERMITA LA CLONACIÓN HUMANA.-VIII. BIBLIOGRAFÍA.

Improving the health literacy of patients in relation to medical practices and research is essential for upholding the principle of respect for autonomy—that is, respecting the patient’s ability to make self-governed choices regarding medical interventions or research participation that reflects the patient’s beliefs and values. This paper considers the challenges of informed consent (i.e. ethical gaps, barriers, and priority needs) that are unique to certain vulnerable groups, namely preadolescents, adolescents, and pregnant women, with a specific emphasis on how neurobio- ethical, multicultural and interreligious variables should be taken into account when assessing the appropriateness of the current documents relying on the notion of informed consent. In exploring how we are to improve the process of obtaining informed consent, this contribution pays particular attention to the relevance of bias and privacy in the debate, suggesting new ways of intervening so to reduce the effect...

These guidelines have been designed to provide information and evidence to assist with the development, or review of the consent process for use in clinical studies with human participants. These guidelines do not deal with issues related to informed consent in clinical practice. The guidelines have been developed by the i-CONSENT consortium. i-CONSENT (H2020, Grant Agreement number 741856) is a European Union H2020 funded program that aims to improve the information that individuals receive when deciding whether or not to take part in clinical studies.

The novel coronavirus disease of 2019 (Covid-19) produced by
the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)
is a pandemic creating a growing global health crisis given its novelty, scope, and initially limited efficacious treatment options. Yet
little is known about optimal non-pharmaceutical interventions to
improve its morbidity and mortality, particularly their cost effectiveness and ethical aspects. This is thus the first known machine
learning-augmented cost effectiveness and ethical analysis of Covid-19 containment measures (and of population quarantine measures in particular for any pandemic) to assist health systems and
governments in ensuring the most clinically and cost-effective
care that can be equitably provided to as many patients as possible during this pandemic and future similar global crises. This
analysis utilized the methodology adopted by the Centers for Disease Control and Prevention (CDC), commonly accepted figures
as inputs, and both extreme and real-world minimal assumptions
to provide the most robust and reliable results possible. Cost
analysis indicated that in the extreme or best-case scenarios for
the Covid-19 containment measure of population quarantine, there is a cost-effectiveness ratio of $154.86 million spent per averted death and a net cost of $1.92 trillion globally. In real-world
scenarios, this intervention has a ratio of $2.52 billion spent per
averted death for a net cost of $1.99 trillion. Personalist social
contract ethics as articulated by the United Nations’ popular ethical system of rights and duties highlights the particular concerns
that such lockdowns may be unethical injustices perpetuated by
states in a manner that undermine individual lives and liberties
while disproportionately negatively impacting lower income communities particularly racial minorities. This study thus suggests that
the prevalent practice of population quarantine compared to standard precautions and more targeted interventions may provide
inadequate net benefit for its financial and ethical cost. At a time
of global shortages straining health system capacities to adequately detect and care for Covid-19 patients particularly in developing nations and underserved communities, this study supports
focusing resources less on interventions with unclear benefit-cost
trade-off and more on better affordable, ethical, and equitable interventions with greater evidence for their life-saving net benefits.