The Bioethics Observatory brought together experts in genetics at a conference that brought together a hundred national and international attendees.
On July 4, the Bioethics Observatory of the Catholic University of Valencia (UCV) organized the Congress “Genetic research: possibilities and risks. An approach from bioethics”, where experts from various fields explored the ethical implications of current scientific advances in this field.
José Manuel Pagán, rector of the Catholic University of Valencia, who opened the event, recalled the important work carried out by the Observatory in the area of science dissemination and thanked the speakers for shedding light on this field. Pagán highlighted the importance of addressing these issues from a university perspective and encouraged attendees to continue training on topics like this.
Julio Tudela, Director of the Bioethics Observatory, stated that the experts chosen to develop the different presentations are excellent, not only technically and scientifically, but also humanly, each one in their discipline. Tudela assured that the scientist must be credible, a task, in his opinion, complicated: “in science, scientific rigor is essential, always seeking the truth first. Bioethics cannot be done without this premise, without delving into what lies behind what we analyze.”
Epigenetics and genome editing
Two first swords, Nicolás Jouve, Emeritus Professor of Genetics and former member of the Bioethics Committee of Spain and Luis Franco, full member of the Royal Academy of Sciences of Spain and the Royal Academy of Medicine of the Valencian Community, were in charge of give the starting signal to the different presentations held in the assembly hall of the San Juan and San Vicente headquarters of the UCV. Lucía Gómez Tatay, professor of cell biology, biochemistry and bioethics at the same university, moderated the table.
Franco, an expert in epigenetics, began his presentation of “Ethics and epigenetics” by analyzing how epigenetic factors influence health, and focused fundamentally on the ethical implications of, on the one hand, the transgenerational transmission of epigenetic factors, with the consequent parental responsibility. Secondly, in the epigenetic damage that the environment can cause, influencing the responsibility of everyone in caring for the “common home”, with reference to Laudato si’.
Jouve, in his presentation “Genome editing. Therapeutic advances and bioethical uncertainties” analyzed the different existing therapeutic advances in genome editing and at the same time presented the bioethical uncertainties that emerge in this field, placing special emphasis on two aspects: firstly, on the consequences of premature application in conditions of imprecision and technological insecurity, especially due to the dangers of affecting the germ line. Secondly, with regard to the interest in applying gene editing for “improvement” purposes not related to health, such as those proposed from the transhumanist perspective.
The Professor of Genetics stressed that transhumanist ideas collide with an “unquestionable” reality: “it is not well known what genetic basis the behavioral factors of human beings have. “Multigene therapies are not yet possible and, for example, multiple genes are involved in a person’s intelligence.”
Bioengineering and gene therapy
“Deciphering the potential of human mini-organs in the laboratory through ethics and bioengineering”, was the central topic of the intervention of Nuria Montserrat, ICREA research professor and researcher principal at the Institute of Bioengineering of Catalonia (IBEC). Together with Juan Roberto Rodríguez-Madoz, researcher at the CIMA Hemato-Oncology Program at the University of Navarra, she was responsible for developing the second round table “Bioengineering and gene therapy” moderated by José Miguel Hernández Andreu, professor and researcher of biochemistry. and molecular biology at the UCV.
Montserrat stated that organoids are currently expected to revolutionize biomedical research. “The generation and use of these models raises ethical debates and analysis of specific topics such as informed consent models, future scenarios for their possible commercialization and applications in personalized medicine and transplants,” said the researcher. Likewise, she continued by stating that “from the beginning, the scientific community has shown interest in deepening ethical research around organoids and their applications and thus guarantee the responsible development and clinical implementation of this technology in this field.”
In this session, attendees were able to learn first-hand about the technical aspects that today surround the generation and use of organoids for applications in biomedical research, personalized medicine and transplants.
Rodríguez Madoz, who spoke about advances in the therapeutic application of gene editing systems based on CRISPR, recalled that these technologies have become a promising tool for the development of innovative therapies that allow progress in the treatment of diseases with unmet medical needs, like AIDS, for example CRISPR technology not only allows the generation of more effective therapeutic products (i.e. improved CAR T therapies), but also direct therapeutic use in order to reverse gene mutations that cause diseases with great precision and efficiency, the researcher recalled.
“We must take into account a series of ethical barriers: the fact that technology allows us to modify cells to prevent the spread of a virus, for example, does not prevent us from doing so in a regulated manner. When we modify the germ line, the consequences of this intervention are unpredictable, he noted.
In the opinion of Rodríguez Madoz, human beings have the “duty” to develop medicines that allow the cure of diseases, but, at the same time, “they do not have the power to modify the genome as they please.” Firstly, because this technology is “scientifically young” and more “experience” with it is still needed “to see what happens in the long term with genetic editing.”
Ethical limits in genetic manipulation
The afternoon round table was led by Vicente Bellver, Professor of Philosophy of Law at the University of Valencia and President of the Bioethics Committee of the Valencian Community, Federico de Montalvo, Vice-Rector of Institutional Relations and Secretary General of the Universidad Pontificia Comillas, and Íñigo De Miguel, member of the Research Group of the Chair of Law and Human Genome of the Department of Public Law of the University of the Basque Country. It was moderated by María José Salar, professor at the Faculty of Legal, Economic and Social Sciences of the UCV.
Bellver started from the idea that in the editing of the heritable genome in embryos, the conditions of safety and efficacy are not met, putting the rights of future generations at stake. “Its use in serious monogenic diseases, in case the difficulties regarding unwanted effects or
consequences of its application, it would open its use to many other ethically questionable applications,” said the expert.
On the other hand, Federico de Montalbo developed the principles and rules of gene editing, highlighting that the advance of biotechnology and gene editing also poses problems from the perspective of its regulation. He encouraged the strengthening of bioethics committees, stating that these are good times for this. Likewise, he raised the dilemma that exists in uncertainty, which in his opinion is resolved with more uncertainty, regulating based on principles instead of rules, given that these are cases that are difficult to foresee.
Likewise, the expert affirmed that the law will be saved by bioethics, requiring more than ever new properly trained judges to address the new scenario. The legislator will be a minimum.
For Iñigo de Miguel, genetic editing is clearly a disruptive technology, capable of substantially changing the way we conceive ourselves as human beings and the way we carry out one of our most important activities, such as reproducing. Its potential to substantially improve the health of our offspring when used on the germline is undeniable. However, many reasons have been given for opposing it. Some of those commonly cited include: the risk inherent in the technique, the temptation to ‘play gods’, the impairment of human dignity, the possibility of it being used for enhancement purposes, or its ability to create a “more unfair world than we know right now.” In the specialist’s opinion, among all these factors, only the last one is truly significant, but it is, at the same time, negative enough that we are forced to debate very seriously about the admissibility of germline editing.
“What should concern us most is that nature can be improved and health can be protected. Embryos could be edited to prevent the transmission of a disease, this is less eugenic than destroying defective ones. Furthermore, we must not forget that the modification of a defective gene does not imply the modification of the human genome.”
De Miguel did not leave aside the ethical aspect underlying this technique in terms of the high cost it entails and the social inequalities it will generate: “the problem with genetic editing is that it is very likely that it will end up becoming a vehicle for exacerbating differences.” social. If so, we might end up concluding that it may not be reasonable to allow its implementation. But, if it is going to be like this, we should do it now and on a global level. Unfortunately, this will hardly be possible.
