Below, I present my response to the questions that were assigned to us for this module.
Through them, I was able to learn about the existence of the UDBHR of 2005, the International Declaration on Human Genetic Data, and the Declaration of Ethical Principles for Medical Research Involving Human Subjects.
Likewise, I was able to understand the concept of informed consent and to ground respect for human dignity as the foundation of bioethics.
Below, I present the answers I was able to provide.
a) Why does the tradition of international human rights law remain in force within the UDBHR?
The acronym UDBHR refers to the Universal Declaration on Bioethics and Human Rights. This instrument is deeply linked to the Universal Declaration of Human Rights of 1948.
In one of the reading materials provided for this module, specifically in the document entitled “Contributions for the Reading and Application in Argentina of the Universal Declaration on Bioethics and Human Rights of UNESCO,” an introduction is offered that allows us to situate the Declaration on Bioethics within the same roots as the Universal Declaration of Human Rights. The text states:
“Knowledge of the aberrant acts carried out by physicians in Nazi concentration camps provided clear evidence of the unthinkable outcomes that the thirst for knowledge can lead to when it goes hand in hand with human cruelty, all concealed under the veil of the so-called new ‘hygiene’ and the alleged neutrality of science. This concern is reflected in the Nuremberg Code, which in its first article makes manifest the need…”
an unavoidable requirement that individuals give their consent
before participating in research (…) it is likely that the emergence
of bioethics must anchor its roots precisely in those antecedents
that reveal a new relationship between civil society, science,
and the State (…)¹
From this it follows that human rights are also present in the Declaration on Bioethics, linked in their traditional form, since the Declaration on Bioethics itself is, in essence, a continuation of the Universal Declaration of Human Rights.
b) What role does human dignity play in the Universal Declaration on Bioethics and Human Rights of UNESCO (2005)?
The human being, viewed integrally, constitutes the foundation of every legal system. I understand that systems of justice, laws, declarations, and the very organization of society must be grounded in the human being, not only in order to have valid meaning, but even to endure over time.
However, this central role of human beings must not be a mere formality. It is necessary that minimum standards of respect exist for what the human being represents in its most holistic expression.
Human dignity plays a predominant role in the Universal Declaration on Bioethics, insofar as it establishes universal minimum standards that safeguard its value (human dignity) and the fundamental freedoms that must prevail above any particular social or cultural condition.²
Professor Armando Andruet, in his essay “The Universal Declaration on Bioethics and Human Rights and Human Dignity,” devotes an entire chapter to human dignity as the substantive anchor of the Universal Declaration of Human Rights. He not only seeks to explain the concept from a philosophical perspective, but also to make it clear that every fundamental right has its roots in respect for human dignity. In this regard, Professor Andruet cites Jorge Hübner Gallo, who states that all these rights share a single root and common foundation, one that no one disputes: the supreme dignity of the human person, considered as such, in the fullness of his or her nature.³
From this we may conclude that human dignity must be present in all rights and, in that sense, it is also present in bioethics, of which it constitutes an essential foundation. In this regard, Professor Andruet explains, citing J. L. Vide Velásquez, the following:
Human dignity, as the foundation of bioethics, therefore requires that the human person not be degraded to such an extent that the level of objectification of human beings expands to a point where dignity itself is trivialized and minimized.⁴
c) What does informed consent consist of? What are the implications of its absence in the collection of human genetic data?
Informed consent is one of the principles of the Declaration on Bioethics, set forth in Article 6 thereof, and defined as follows:
Article 6 – Consent
1. Any preventive, diagnostic, or therapeutic medical intervention shall only be carried out with the prior free and informed consent of the person concerned, based on adequate information. Where appropriate, consent should be explicit, and the person concerned may withdraw it at any time and for any reason, without this entailing any disadvantage or prejudice to that person.
2. Scientific research should only be carried out with the prior free, explicit, and informed consent of the person concerned. The information should be adequate, provided in a comprehensible manner, and include provisions regarding the withdrawal of consent. The person concerned may withdraw his or her consent at any time and for any reason, without this entailing any disadvantage or prejudice. Exceptions to this principle should be made only in accordance with ethical and legal standards adopted by States, in a manner consistent with the principles and provisions set out in this Declaration, in particular Article 27, and with international human rights law.
3. In cases of research carried out on a group of persons or a community, the agreement of the legal representatives of the group or community concerned may also be sought. The collective agreement of a community or the consent of a community leader or other authority should not, under any circumstances, replace the informed consent of an individual.
Ana Magnolia Méndez Cabrera
This definition may be very basic and may not contain all the elements that constitute informed consent; however, it is possible to infer from it a very important aspect: the consent of the individual in preventive, diagnostic, and/or therapeutic medical intervention is indispensable for the proper practice of the health profession.
With regard to the second part of this question, concerning the implications of the absence of consent in the collection of human genetic data, it is necessary to highlight what is established in the Declaration of Helsinki,⁵ which reaffirms the need for consent in order to carry out any research, as well as what is provided for in Article 27 of the International Declaration on Human Genetic Data. This article establishes that no provision of the Declaration may be interpreted as conferring upon a State, group, or individual any right to engage in activities or perform acts contrary to human rights, fundamental freedoms, and human dignity, and in particular to the principles set forth therein.
In cases where procedures are initiated without consent, I understand that once the individual becomes aware of such actions, he or she may request the immediate cessation of the use of his or her genetic data and demand that such data be dissociated or destroyed. I also understand that such conduct could give rise to claims for damages and the corresponding compensation. However, at least in the documents I had the opportunity to review in relation to this question, I did not find a specific sanction for the infringement of these rules. Therefore, I understand that such sanctions must be found within the domestic law of each nation.
Bibliografía
Andruet, Armando. La Declaración Universal de Bioética y Derechos Humanos y la dignidad humana. Disponible en Internet: http://www.acaderc.org.ar/doctrina/articulos/la-declaracion-universal-sobre-bioetica-y-derechos. Consultado el 8 de marzo de 2019, 4:54 p. m.
Hübner Gallo, Jorge. Panorama de los Derechos Humanos. Buenos Aires: Eudeba, 1977, p. 10. Citado por Andruet, Armando, La Declaración Universal de Bioética y Derechos Humanos y la dignidad humana, p. 32. Disponible en Internet: http://www.acaderc.org.ar/doctrina/articulos/la-declaracion-universal-sobre-bioetica-y-derechos. Consultado el 8 de marzo de 2019, 4:54 p. m.
Vide Velázquez, J. L. La fundamentación de la bioética, en Feito, L. (ed.), Bioética: la cuestión de la dignidad. Madrid: Universidad Pontificia Comillas, 2004, p. 105 y ss. Citado por Andruet, Armando, La Declaración Universal de Bioética y Derechos Humanos y la dignidad humana, p. 32. Disponible en Internet: http://www.acaderc.org.ar/doctrina/articulos/la-declaracion-universal-sobre-bioetica-y-derechos. Consultado el 8 de marzo de 2019, 4:54 p. m.
Vidal, Susana. Aportes para la lectura y aplicación en la Argentina de la Declaración Universal de Bioética y Derechos Humanos. Buenos Aires, pp. 179–180.
Vidal, Susana. Aportes para la lectura y aplicación en la Argentina de la Declaración Universal de Bioética y Derechos Humanos. Buenos Aires, p. 186.
