Old and new rights in the postgenomic era
| Autor | Carla Faralli |
| Cargo | Professor at Bologna University Law School, Italy. |
| Páginas | 86-98 |
Page 86
*Translated by Filippo Valente.
Carla Faralli1
Recebido em 2.3.2016
Aprovado em 1.4.2016
Abstract: The article discusses about the rights in the postgenomic era.
Resumo: O artigo trata sobre os direitos na era pós-genômica.
Keywords: Fundamental rights; Genome Project; Postgenomic Era.
Palavras-chave: Direitos Fundamentais; Projeto Genôma; Era Pós-Genômica.
As is known, a Human Genome Project was started in the late 1980s which drew the public’s attention to a revolution begun a few decades earlier, in 1953, with the discovery of the DNA’s double-helix structure. As the name suggests, the purpose of the project was to map the human genome by describing the structure, position, and function of the genes that characterize the human species.
This research has been amplified and distorted under the pressure of great economic interests, among other factors, and has been touted as “the culminating phase in the quest for the biological Grail,”2 revealing what it means to be human, and having the potential to change our philosophical self-understanding by showing us how life works. And so there are great expectations this research has engendered as to the use it can be put to in diagnosing, curing, and preventing many diseases, this on the basis of the assumption that every aspect of our individual and social life can be traced to our genes.
More recent studies have underscored the significant role of nongenetic factors in an organism’s formation and behaviour, this owing, for example, to the complexity of the
Page 87
processes by which genes, proteins, and the environment interact. Further, as much as genetic testing may make it possible for us to detect, before or after birth, genetic anomalies responsible for a disease now in progress or potentially in the making, and may also make it possible to locate defective genes in DNA, there is nothing like a cure in most of these cases, because there is still too wide a gap between progress in diagnosis and available therapy.
The moral, social, and legal consequences attendant on this kind of research did not escape the project’s own promoters, who set up a special commission under a project called ELSI (Ethical, Legal, and Social Implications project) so as to inform and raise awareness about the research in progress and to encourage debate, in an effort to keep at bay distorted uses of the knowledge gained, especially those uses driven solely by biological conceptions of the person and by discrimination based on genetic differences.
Beginning in the 1990s, different international documents addressed the protection of individual rights in connection with the issues raised by genetics: First came the Universal Declaration on the Human Genome and Human Rights, adopted by UNESCO in 1997; then the Oviedo Convention on Human Rights and Biomedicine, also of 1997; then the Charter of Fundamental Rights of the European Union (CFR), of 2000; then the International Declaration on Human Genetic Data, of 2003; and finally the Universal Declaration on Bioethics and Human Rights, of 2005.
The Universal Declaration on the Human Genome and Human Rights reads in its preliminary matter that its own principles are introduced, “recognizing that research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and of humankind as a whole, but emphasizing that such research should fully respect human dignity, freedom and human rights, as well as the prohibition of all forms of discrimination based on genetic characteristics.”3
Having proclaimed in Article 1 that the “human genome [...] in a symbolic sense [...] is the heritage of humanity,” the document sets down in Article 2 the principle that “everyone has a right to respect for their dignity and for their rights regardless of their genetic characteristics,” and “that dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity.” And Article 6 states,
Page 88
“No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.” In 2003, UNESCO relied on this document for its own International Declaration on Human Genetic Data, setting forth principles for the collection, processing, use, and storage of such data, which it recognizes in Article 4 as having a special status, for it “may have a significant impact on the family, including offspring, extending over generations, and in some instances on the whole group to which the person concerned belongs.”
The Convention on Human Rights and Biomedicine,4 for its part, and as is known, was the outcome of a long and laborious process begun in 1991, and not until 1997 did it come into force, when numerous states signed it in Oviedo. It codifies preexisting yet scattered pronouncements the Council of Europe had issued to member states beginning in 1970 with the aim of achieving international cooperation on medical ethics, and it also codifies some (likewise scattered) recommendations on genetics dating to the 1980s, beginning with Recommendation No. 934 on Genetic Engineering, which will be discussed in Section 2.
Chapter 4 of this convention is devoted to the human genome, with four articles prohibiting discrimination in any form against anyone on account of their genetic heritage (Article 11); allowing genetic testing only for medical purposes and for research, and only with appropriate genetic counselling (Article 12); permitting intervention on the human genome only for preventive, diagnostic, or therapeutic purposes, and only if its aim is not to modify the genome of any offspring (Article 13); and prohibiting the use of medically assisted procreation for the purpose of choosing a child’s sex, unless such use is necessary to avoid a serious hereditary disease related to sex (Article 14). So we have here a series of provisions affirming a right to an individual’s genetic identity—this by way of a corollary, as it were, of the rights to life and health. In 2008, a protocol to the convention was issued on genetic testing,5 setting forth some fundamental principles, among which an obligation to ensure adequate genetic counselling when doing genetic testing, and the right not to be informed. Particularly interesting in this regard is Article 13 of the protocol, introducing an exception to
Page 89
Article 6 of the Oviedo Convention on Human Rights and Biomedicine (exceptionally, and by derogation from Article 6(1) of that convention and from Article 10 of the protocol itself), on the protection of those who cannot consent: The exception states that genetic testing may be carried out on someone lacking the capacity to consent if such testing is undertaken for the benefit of family members, this so long as certain conditions are met, including the condition that the benefit gained be important to the health of this person’s family members, or otherwise that the test allow them to make an informed choice with respect to procreation, and that certain criteria be met ensuring minimal risk for the person subject to the test.
The EU Charter of Fundamental Rights (CFR)—signed in Nice in 2000, and now referenced in the Treaty of Lisbon, which came into force on 1 December 2009—includes genetic features in Article 21 in a full list of prohibited grounds of discrimination: “Any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited.”6
The special emphasis that discrimination receives in the documents just briefly discussed shows that genetic discrimination has now made its way into the open menu of forms of discrimination, and yet it differs from these other forms in at least two respects.
In the first place, considering the nature of genetic data, discrimination based on genetic features is discrimination affecting not the single individual but the biological family the individual belongs to. This biological membership group makes it necessary to carefully consider the question as to who makes up this group and what rights they each have, as concerns, for example, the ability to access information about other members of the group, or the privacy of those concerned (including under this heading the right not to be informed), and the authority to use data pertaining to the group.
Clearly, there are profound implications for our individual personality once we find out what our genetic destiny will be as revealed through a predictive test (and it should be mentioned in passing from the outset that these...
Para continuar a ler
PEÇA SUA AVALIAÇÃO