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Ética en Investigación en América Latina desafíos ante las nuevas tecnologías

Dra. Lílian Santos

UNESCO Chair in Bioethics and Human Rights (APRA-UER)

Catholic Institute of Technology




Tecnologías que impactan la reproducción

Tecnologías con impacto ambiental

Wearable devices



Biohackers y DYIbio


Clustered Regularly Interspaced Short Palindromic Repeats Illustrations by Jeffery Mathison It was adapted from a naturally occurring genome editing system in bacteria. The bacteria’s immune system works by capturing snippets of DNA from invading viruses and using them to create DNA segments known as CRISPR arrays. The CRISPR arrays allow the bacteria to kind of remember the viruses and even closely related viruses. If the viruses attack again, the bacteria produce RNA segments from the CRISPR arrays to target the viruses’ DNA. The bacteria then use Cas9 or a similar enzyme to cut the DNA apart, disabling the virus. The CRISPR-Cas9 system works similarly in the lab. Scientists create a small piece of RNA with a short guide sequence that attaches to a specific target sequence of DNA in a genome. The RNA also binds to the Cas9 enzyme. The modified RNA is used to recognize the DNA sequence, and the Cas9 enzyme cuts the DNA at the targeted location. Once the DNA is cut, scientists use the cell’s own DNA repair machinery to add or delete pieces of genetic material, or to make changes to the DNA by replacing an existing segment with a customized DNA sequence. Emmanuelle Charpentier and Jennifer Doudna 2020 Nobel Prize in Chemistry

Gene drives: animal populations can be altered or suppressed by allowing a mutation or foreign gene to spread quickly through a population. This has potential applications in the control of disease vectors such as mosquitos[1], rodent pests, and invasive species. But if released into the wild, organisms carrying gene drives may be hard to contain. And if the technique has low efficiency, it could leave time for species to evolve and develop resistance.[2] [1] Cf. A. R. North - A. Burt - H. C. J. Godfray, «Modelling the suppression of a malaria vector using a CRISPR-Cas9 gene drive to reduce female fertility», BMC Biology 18/1 (2020), 98. [2] Cf. Nuffield Council on Bioethics, «Horizon scanning 2022», 15–17.

Chickens genetically resistant to avian influenza:

  • In chickens, influenza A virus (IAV) relies on host protein ANP32A. CRISPR/Cas9 was used to generate homozygous gene edited (GE) chickens containing two ANP32A amino acid substitutions that prevent viral polymerase interaction. 9/10 edited chickens remain uninfected.
  • Challenge with a higher dose, however, led to breakthrough infections. Unexpectedly, this virus also replicated in chicken embryos edited to remove the entire ANP32A gene and instead co-opted alternative ANP32 protein family members, chicken ANP32B and ANP32E.
  • Additional genome editing for removal of ANP32B and ANP32E eliminated all viral growth in chicken cells. Multiple genetic modifications will be required to curtail viral escape.

Gene-editing experiments have produced disease-resistant rice, tomatoes that ripen more slowly, soybeans with healthier polyunsaturated fat content, and potatoes with lower levels of a potent neurotoxin.Food scientists are achieving these improvements not with transgenic techniques the splicing of one species DNA into a different species genome-but by fine-tuned genetic upgrades involving changes to just a few letters of the organisms own DNA. Doudna, J. A. - Sternberg, S. H., A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution, Houghton Mifflin Harcourt, Boston 2017, p.xvi.

GAP 90/10

  • Que as vacinas doadas tenham um prazo de validade mínimo de dois meses e meio antes de chegarem ao país de destino.
  • Que os países destinatários fiquem cientes das doações um mês antes delas serem entregues.
  • Esperam que essas doses sejam despachadas com suprimentos essenciais adicionais, como seringas.
https://www.bbc.com/portuguese/internacional-59595360 O país que só vacinou 3% da população contra covid, mas vai destruir 1 milhão de doses vencidas - BBC News BrasilÉ o país mais populoso da África, mas também um dos mais atrasados do continente na vacinação contra o coronavírus: apenas cerca de 3% da população...BBC News Brasil

GAP 90/10 The Global Forum for Health Research estimated that less than 10 per cent of the $55 billion global spending on health research is devoted to diseases or conditions that account for 90 per cent of the global burden of disease. For example, pneumonia, diarrhoea, tuberculosis and malaria together account for 20 per cent of the disease burden in the world, receive less than 1 per cent of the public and private funds for health research. This disparity is the result of economic as well as policy decisions. It is not profitable to develop new drugs for poor populations that cannot afford them. There also is no urgency since these populations usually cannot put any pressure policy-makers. (Cfr. ten Have, 2016, p. 62)

"Exclusive: World’s first baby born with new “3 parent” technique"

"Nebraska grandmother acts as surrogate for gay son"


Bio: madre genética Ley: tía

Bio: Madre gestante y abuela genética Ley: abuela

Bio: padre Ley: padre

Bio: tío Ley: padre

"Homem trans engravida para realizar sonho do casal de ter filho"


"Google Baby"

"Twins born from embryos frozen 30 years ago"


"Japan approves first human-animal embryo experiments"



"Scientists grow whole model of human embryo, without sperm or egg"

Meat alternatives: There is growing interest and investment in plant-based and cultured meat alternatives that attempt to closely imitate meat produced from animals[1]. Lab-grown meat was presented at Riverside Studios in London in 2013, and some got a taste of the world's first stem-cell burger[2]. The environmental profile of meat alternatives looks promising in some scenarios, but there is little independent evidence on the effects of large-scale production and health implications.[3] [1] Cf. Nuffield Council on Bioethics, «Horizon scanning 2022», 2022, The Nuffield Council on Bioethics, in https://www.nuffieldbioethics.org/publications [20-7-2022], 15–17. [2] Cf. S. Ott, «Have a taste of the world’s first stem cell burger», CNN (2013), in https://www.cnn.com/2013/08/05/world/europe/europe-stem-cell-burger-ott/index.html [7-9-2022]. [3] Cf. Nuffield Council on Bioethics, «Meat Alternatives», Nuffield Council on Bioethics 2020, in https://www.nuffieldbioethics.org/publications/meat-alternatives/read-the-briefing-note/conclusions [26-7-2022].

Animal research: The number of animals used in research continues to increase, largely due to the use of genetically modified mice and primates. The use of animals in pre-clinical trials is a practice in an earlier phase of the research, before moving to experimentation in humans. [1] Cf. Nuffield Council on Bioethics, «Horizon scanning 2022», 15–17.

Genome editing in farmed animals: researchers are exploring producing cattle without horns to prevent harm to other cattle and handlers, making pigs and chickens resistant to certain diseases, and making animals more productive and tolerant to heat.[1] Are we helping animals by making them more resistant? Maybe more resilient and productive animals will diminish the number of used animals. [1] Cf. Nuffield Council on Bioethics, «Horizon scanning 2022», 15–17.

De-extinction: scientists are attempting to revive extinct animals and plants in the laboratory. For example, genome editing techniques are being used to try to create a hybrid of the woolly mammoth and the Asian elephant[1]. If de-extinction becomes possible, questions remain on how would species be selected, and the effects on today's ecosystems.[2] Is it a restoration of the natural order, a correction of the consequences of past human actions that caused the extinction of some species, or rather as an unacceptable intervention in natural selection? [1] Cf. M. Greshko, «Mammoth-elephant hybrids could be created within the decade. Should they be?», 2021, National Geographic, in https://www.nationalgeographic.co.uk/science-and-technology/2021/09/mammoth-elephant-hybrids-could-be-created-within-the-decade-should-they-be [26-7-2022].[2] Cf. Nuffield Council on Bioethics, «Horizon scanning 2022», 15–17.

Gene drives: animal populations can be altered or suppressed by allowing a mutation or foreign gene to spread quickly through a population. This has potential applications in the control of disease vectors such as mosquitos[1], rodent pests, and invasive species. But if released into the wild, organisms carrying gene drives may be hard to contain. And if the technique has low efficiency, it could leave time for species to evolve and develop resistance.[2] [1] Cf. A. R. North - A. Burt - H. C. J. Godfray, «Modelling the suppression of a malaria vector using a CRISPR-Cas9 gene drive to reduce female fertility», BMC Biology 18/1 (2020), 98. [2] Cf. Nuffield Council on Bioethics, «Horizon scanning 2022», 15–17.

"The Internet of Bodies Will Change Everything, for Better or Worse"


"Elon Musk’s Neuralink patient demonstrates how brain chip works"

"Paralysed man walks again using thought-controlled brain-spine device"

"Spinal implant allows Parkinson's patient to walk again"





Biohackers, cyborgs, DIYbio

"Transhumanism: Meet the cyborgs and biohackers redefining beauty"

Neil Harbisson was born with achromatism, or total colorblindness. In 2004, he had an antenna implanted into his skull that allows him to perceive colors as audible vibrations.

Young's arm was designed by Japanese gaming giant Konami and prosthetics sculptor Sophia de Oliveira Barata. It contains a USB dock and other special features.

Biohacking o "hágalo usted mismo" biología (DIYbio)

  • Características:-Personas ordinarias, no sólo científicos. -Enorme cantidad de información disponible. -Herramientas baratas y disponibles en internet con entrega a domicilio. -Explicaciones y análisis compartirdos en las redes sociales: utilizan y aumentan las fuentes abiertas. -Ciencia y la alta tecnología como parte de la vida cotidiana.
Ejemplos: https://synbiobeta.com/free-genes-project-makes-dna-freely-available-to-the-world/ Keoni Gandall performed his first cloning experiment at age of 12. His teacher saw that Keoni was really into biology, so he helped Keoni to order a bacterial transformation kit to do at home... Today, without formal training or degree, Keoni is working at Stanford University and leads the Free Genes project, to make DNA biotechnology more accessible to the general public. (Cf. Gruber, 2019, pp. 1–2) https://www.flashforwardpod.com/2019/05/14/bodies-enter-night/ Gabriel Licina is famous because he managed to achieve night vision by injecting Chlorin e6 into his eyes. (Giannnkoulopoulus et al., 2017, p. 294) https://mobilecomputingblog.wordpress.com/2015/12/18/man-machine-transhumanism/ Tim Cannon managed to implant a chip at the size of a deck of cards in his arm. The chip transfers information such as his temperature to his android device. (Giannnkoulopoulus et al., 2017, p. 294) https://www.theguardian.com/science/2017/dec/24/josiah-zayner-diy-gene-editing-therapy-crispr-interview In October 2017, live on Facebook, Josiah Zayner, who had worked for NASA, became the first one to modify his own genes with CRISPR. The modification aimed to increase muscular strength. According to him, the goal of that was scientific, but also cultural: high biotechnologies should be available for people and not be a monopoly of academics and pharmaceutics. Zayner also made available to the world the tools to follow his example. He published online a Guideline to human CRISPR and started selling a kit for 20 dollars with DNA that helps muscular growth. (Cf. Benanti, 2020, pp. 104–106) https://uniavisen.dk/en/do-it-yourself-biology-at-the-medical-museion/ The University of Copenhagen's Medical Museion collaborated with the local DIY biology community to create a DIY biology lab. The protagonists suggested that “hacking may be a useful framework for thinking about co‐curation”.(Davies et al., 2015, p. 117)

“nadie pretende volver a la época de las cavernas” (LS 114)

El verdadero progreso es el ético, de nada sirve correr en dirección equivocada.

No todo lo que es tecnicamente posible es moralmente aceptable. El conocimiento es positivo, pero la aplicación puede que no lo sea.

Dato científico

  • Conocer bien los elementos
  • Posibilidad y necesidad de diálogo interdisciplinar

Lectura antropológica-valorativa

  • Naturaleza
  • Felicidad-libertad-responsabilidad
  • Hombre, familia y sociedad
  • Sociabilidad: aspecto sopra-nacional de los problemas bioéticos
  • Ética global-principios universales-Derechos Humanos
  • Perspectivas culturales y religiosas

Elaboración ético-normativa

  • Ética universal vs relativismo
  • Derechos y deberes humanos
  • Leyes positivas
  • Global Governance

Situación-pregunta bioética

Ética que, partiendo del dato científico, analisa racionalmente la licitud de la intervención humana sobre la vida (humana y medio ambiente).

Ética ≠ Legalidad

Ética ≠ Posibilidad técnica


Método Triangular






Acciones son buenas en la medida que promueven placer y evitan el dolor

En Bioética

Bien: más placer, menos dolor para el mayor número de personas.


Cuando un ser no es capaz de sufrir ni de disfrutar, no hay nada que tener en cuenta.


Peter Singer


step 1

Duis autem vel eum iriure dolor in hendrerit in










Beauchamp and Childress

Beauchamp and Childress

obliga a no dañar a los demás

todos merecen el mismo respeto y deben reivindicar su derecho a la vida, a la salud y a la equidad en la distribución de los recursos sanitarios

valores, criterios y preferencias del enfermo en la toma de decisiones

proporcionar beneficios, hacer todo el bien al paciente


Defensa de la vida física


Totalidad y Terapia


Libertad y Responsabilidad


Sociabilidad y Subsidiariedad


Eglio Sgreccia

Eglio Sgreccia



Lílian Santos

Presentación interactiva

  • La vida física, corpórea, es el valor fundamental de la persona porque la persona no puede existir si no es en un cuerpo como co-esencial a la persona, es decir, como base única y necesaria para su existencia en el tiempo y en el espacio.
  • Tampoco la libertad puede darse sin la vida física: para ser libre y tener derechos humanos es necesario ser viviente. No se puede ser libre ni defender los derechos básicos si no tenemos la vida. La vida llega anteriormente a la libertad. Por lo tanto, cuando la libertad suprime la vida es una libertad que se suprime a sí misma y, en consecuencia, elimina la base de los derechos humanos.
  • Solo el bien total y espiritual de la persona está por encima del valor de la vida física.

  • Engloba el concepto de que la persona es libre, pero es libre para conseguir el bien de sí mismo y el bien de las otras personas y de todo el mundo, pues el mundo ha sido confiado a la responsabilidad humana.
  • No puede ejercitarse la libertad sin ejercerse la responsabilidad. Se debe procurar una bioética de la responsabilidad frente a las otras personas, frente a sí mismo y, ante todo, a la propia vida, a la vida de los otros hombres y la de los otros seres vivos.
  • No obstante, como se ha dicho en el primer principio, el derecho a la defensa de la vida tiene prioridad sobre el derecho a la libertad, es decir, para ser libres es imprescindible estar vivos porque la vida es condición necesaria para el ejercicio de la libertad.

Pregunta ética sobre una intervención humana sobre la vida, salud, medio ambiente

Ej: pérdida de biodiversidad, seguridad alimentaria, armas biológicas, biohacking, tráfico de órganos, turismo médico, comercialización de la investigación médica, cambio climático, migraciones, pobreza, guerras, explotación de poblaciones vulnerables...


  • Del qué al quién: no una cosa sino un sujeto individual irrepetible
  • Estructura tridimensional de la persona: cuerpo, psique y espíritu.
  • Carácter autónomo, originario y estructural de la afectividad.
  • Las relaciones interpersonales: dialogicidad del mundo.
  • Primacía de la libertad y el amor.
  • Corporeidad. Sexualidad. El hombre como varón y mujer.
  • Otros rasgos: el carácter narrativo de la persona, la relevancia de la subjetividad, etc.

Principios de la Bioética Personalista

  • Defensa de la vida física: no se puede existir, ser libre, tener derechos humanos sin vida.
  • Libertad y responsabilidad: alcanzar el bien individual y colectivo.
  • Totalidad y terapia: el organismo está orgánicamente unificado. Es lícito intervenir sobre una parte para salvar todo el organismo.
  • Sociabilidad y subsidiariedad: la vida es un bien social, no sólo individual. La sociedad debe ayudar sin sustituir las iniciativas individuales. Implica solidaridad.
Cf. Sgreccia, E. (1994) Manuale di Bioetica. Fondamenti ed etica biomedica. Vita e Pensiero. p. 171–180.

"Because we are bodies, vulnerability, mutual dependence, and natural limits are inextricable features of our lived human reality. (...) our embodiment situates us in a particular relationship to one another, from which emerge obligations to come to the aid of vulnerable others, including especially the disabled, the elderly, and children."

Los bebés pequeños, las personas en coma y las personas con ciertos tipos de defectos cerebrales no muestran estas características. Para los utilitaristas, estos seres humanos "marginales" merecen menos consideración moral que otros seres humanos, e incluso que algunos animales no humanos.

Organismos conscientes de su propia existencia merecen plena consideración moral porque:

  • Experimentan dolor y placer
  • Son conscientes de su propia existencia y contexto
  • Prefieren experimentar una vida placentera
  • Prefieren seguir vivos

  • Toda persona está obligada a autorrealizarse participando en la realización del bien de sus semejantes y, dado que la vida humana es un bien personal y también social, cada persona debe comprometerse a proteger la vida como un patrimonio de la sociedad y no sólo de cada individuo personal.
  • Asimismo, la subsidiariedad es un principio que completa al anterior diciendo que la sociedad tiene la doble obligación de asistir o ayudar más allí donde las necesidades son más graves y urgentes, sin suplantar o sustituir las iniciativas libres de los ciudadanos, bien sea individualmente o de forma asociada. Este principio implica la práctica de la solidaridad.

  • La corporeidad humana es un todo unitario que resulta de partes distintas, orgánica y jerárquicamente unificadas entre sí por la existencia única y personal.
  • Es lícito intervenir en una parte del cuerpo cuando no hay otra forma para sanar o salvar su totalidad.
Se requieren las siguientes condiciones: 1ª) que la intervención se realice sobre la parte enferma, 2ª) que no existan otras vías alternativas de tratamiento, 3ª) que las posibilidades de éxito terapéutico sean buenas, 4ª) que haya consentimiento informado de la persona o de su legítimo representante.