Some Reflections on Information and Genetic Privacy

Alberto Arellano Méndez

1. Introduction

The current century is immersed in the era of biology. If the last century was the atomic age, the current century should be called the genomic age. Indeed, important scientific discoveries and technical and technological innovations have a major effect on human relations, social, economic and cultural structures and, to a large extent, on the way in which laws and the courts should resolve the new problems resulting from the contributions of biology, medicine and new information and communication technologies.¹

Jurists who have specialized in the field recognize that, on the legal terrain, a series of topics, known as frontier issues, have been contemplated, and should find an appropriate international response, one that is more or less homogeneous, be it through the application of existing general regulatory schemas or by being sanctioned by specific norms, which should respond with greater precision to new situations that are both original and complex.²

In the fields of biology and genetics, progress has been boundless. Science and technology have been confused with a power unknown in other stages of history. We now know that not everything that is scientifically possible is ethical and legally desirable, since technology can irreversibly compromise not only the present but the future of humanity. There is the risk that practices may be developed that run contrary to the recognition of equality and human rights.

This concern has spurred the promotion of an international order in which, without limiting the benefits of research and the application of genetics, all those prejudicial effects of the application of science can be prevented and, to a certain extent, avoided. The bioethical approach is conceived as a way of thinking and acting that assumes the responsibility of studying, regulating and raising possible solutions in relation to the transforming power of life sciences, to assure that scientific knowledge does not run contrary to the interests of humanity and will be source of well-being for individuals and nations.³

The aim of bioethics⁴ is to protect human rights, appealing to respect for the human body, the protection of individuals in biomedical research, respect for the beginning of life, the right to a private life and the presence of ethics in medical practices.

2. Defining Concepts

Genetics is the branch of biology that studies the principles and mechanisms of hereditary transmission in living beings, especially the means by which different characteristics are transmitted to descendants and the causes of similarities and differences between related organisms.⁵

Genes are the minimum unit of biological information, and all the biochemical characteristics of every living being is to be found in them.⁶

A genome is the series of genes comprising each individual, that is, the entirety of information contained in the genes, and it is transmitted from generation to generation, perpetuating the common characteristics of the species and the specific traits of each individual, along with his or her predecessors. Thus, we all are children and perhaps parents of human beings, although with differences in terms of height, eye and skin color, expressions and behaviors.⁷

In terms of precisely defining the term genetic information, for legal effects, one should distinguish between genetic material as such and genetic information. Genetic material will always accompany us from the first stages of life until the moment of our death, while genetic information is obtained by undertaking a series of techniques or methodologies that allow certain specific data to be extracted that, when taken as a whole, comprise the above-mentioned genetic information. "We can conclude that genetic information is the series of data of genetic origin and nature that will necessarily be deposited in a certain repository, be it a manual file or a specific databank".⁸

Genetic information is specific and important. On the one hand, it allows us to visualize the identity of an individual and, on the other, it can reveal the current state of health and, in certain cases, the future state of a person or a group of people. In addition, it is information that is different from what is commonly handled in the legal and medical fields, since genetic data and genetic fingerprints are derived from a series of precise and sophisticated techniques. They not only reveal the identity of a person, but also that of his or her offspring. For these reasons, it is necessary to protect and provide a precise legal definition of genetic information, as well as a normative framework, the purpose of which is to regulate the criteria for obtaining, handling, storing and privacy in relation to such data.⁹

3. Posing the Problem

Rights are structured on the basis of fundamental values such as life, dignity, the quality of life, freedom, equality and solidarity. Those values are the source or essence for granting protection and security to people. Social changes and biotechnical development have resulted in the displacement of classic human rights, as well as the emergence of new rights. This phenomenon can be attributed to a situation in which the field of legal protection has been shown to be insufficient in certain cases.

In the doctrine of fundamental rights, there have been generations of human rights. First are civil and political rights; second, economic, social and cultural rights; and the third generation is represented by solidarity, environmental and miscellaneous rights. The defense of humankind in relation to biotechnical advances and genetic manipulation should be enshrined in some of these categories. Together with the right to peace, to the quality of life, and informational freedom, as rights that are representative of the third generation, we also find the right to die with dignity, to change one´s gender and to be protected against possible excesses of genetic investigation.¹⁰

In this order of ideas, we find among the new rights: i) the right to integrity, in order to protect the unique character and genetic essence of each individual, preventing germinal genetic manipulation; ii) the right to know one´s own biological origin, authorizing all individuals who do not know their progenitors to initiate the legal actions necessary in order to discover their biological nexus; iii) the right to genetic privacy, based on the protection of the individual´s most personal information and; iv) the right to know or not to know, based on the prerogative to know or wish to ignore the results obtained from a genetic test.

We can label all these new legal prerogatives biological rights, which are those the enjoyment of which is recognized for individuals as active subjects who are responsible for the natural biological evolution of the human species and its environment.¹¹

At this point, I will only center my concerns on the right of each individual to the confidentiality of their genetic data. As would logically be assumed, a significant part of the bio-legal problems concerning genetic privacy and intimacy arise as the result of the acquisition, interpretation, storage, transmission and circulation of an individual´s genetic information.

4. Usefulness of Genetic Information

The human genetic data obtained as a result of biological samples of blood, tissue, saliva, sperm, etc., play an increasingly important role in humankind´s social life. Such data respond to the needs raised by judges, police and lawyers concerning paternity tests, the identification of criminals or the identity of accident victims. They are also needed, to different degrees, to respond to queries from doctors. There are now genetic tests that can accurately detect some pathologies, and others that are less conclusive because they only indicate a disposition.¹²

On the health front, medical care in the future will no longer attend to the phenotypical aspects of illnesses, that is, to the symptomatology presented by each individual at the moment at which he or she gets sick, but rather will address each patient´s genetic characteristics. With this in mind, illnesses can now be classified, among other categories, as those that have a mainly genetic origin (dominant diseases), in which there is the presence of a mutation in the copy of a gene. About 300 such types are known, among the most significant of which are acondroplasic dwarfism, Huntington´s disease and Von Recklinghausen´s neurofibromatosis.¹³ Another type of illness is the recessive disease, in which the two copies of genes should be altered in order for it to appear. Approximately 1,500 such afflictions are known, among them albinism, several hereditary anemias, and cystic fibrosis of the pancreas.

Then there is a second group of illnesses, the product of several mutations or variations in multiple genes (multigenic diseases). This joint presence of genes confers a special susceptibility to the organism that, in interaction with environmental factors, can produce a defect or an illness. In some cases this could be diabetes, different types of cancer, arterial hypertension, coronary arteriosclerosis and certain mental illnesses. It is only on the basis of the unfavorable interaction of such factors as an inadequate diet, stress, poverty, marginalization, exposure to carcinogenic substances with the products of these genes that the illness to which the person is susceptible will appear.¹⁴

Finally, a third group of genetic anomalies is determined by the number of chromosomes. The most well-known example is Trisomy 21 or Downs syndrome. In such cases, there is an alteration in the number of chromosomes present, be it higher or lower.¹⁵

In summary, genetic illnesses affect multiple systems of the organism. They are chronic, determine important disabilities and require multidisciplinary, complex, and prolonged medical care.

5. Genetic Databases

Scientific advances and the need to be able to have better tools for the diagnosis and treatment of different illnesses have led to the proliferation of genetic databases. It is not easy to determine how many such databanks are in existence because at present there are even small hospitals that handle data, or at least maintain DNA samples for use in treating diseases.

The creation of genetic databases began in the 1970s, when a group of biologists and mathematicians at Rockefeller University (New York) proposed the establishment of a database to keep DNA sequences that were being discovered. Those databases held information on the discoveries of adenitic systems that tend to vary among animals, viruses and bacteria, as well as information from the researchers who had discovered those systems.

It was not until 1982, when the GenBank was established in Los Alamos, in the United States, that a specific program was simultaneously developed to detect sequences, the English acronym of which is BLAST. It was developed by David Lipman to store information in relation to human genetic sequences. In the case of genetic information on humans, the danger of identifying data on individual genetic characteristics and the potential filtering of such information must be a great source of concern in relation to the defense of the right to privacy and in terms of avoiding discrimination.¹⁶

In Europe Denmark, Norway, Finland, Sweden, the Netherlands, Ireland, France, Italy, Greece, Portugal, Spain, Austria, Switzerland and Germany have established certain norms for the handling of genetic material in penal processes.

In Latin America, Argentina is the only country that has a specific law, enacted in 1984, for regulating the National Genetic Data Bank.

In Mexico, the country already has the Umbilical Cord Blood Bank (BSCU), which is part of the National Center for Blood Transfusions, a project that began in June 2003, under the auspices of the Health Ministry. This project was not specifically designed to gather information of a genetic character on umbilical cord blood donors; however, due to the type of data collecting procedure employed, it should be held to some type of explicit legal regulation. It is important to point out that the unit that seeks and handles data is under the strict control of the blood bank itself, which uses a computer program known as TESI Hemodata in order to guarantee the anonymity of the mother of the baby who is the cord donor.

The use of genetic information allows us to find out many things. Nevertheless, it poses new challenges that could lead to attacks on justice and liberty, and given such a scenario, the problem facing the governments resides in defining how to regulate the use of this information, particularly as a result of the current lack of protection against the wrongful use of general databases.¹⁷

6. Defining the Limits of the Concept of Genetic Privacy and Intimacy

Relationships in society often lead to a person needing to know or investigate data, information, documents or materials of a singular and personal character, which correspond to another individual. Lawyers, accountants, bankers, notary publics, priests, psychologists, doctors and now geneticists can end up knowing about aspects of an individual´s intimate and private life, information that in most cases should remain sealed as a protective measure against possible attacks on a person´s interests.

Intimacy and privacy are currently recognized as rights or values for individuals. They are usually linked with other basic values such as dignity, freedom, equality, security and self-determination, all of which are indispensable for the development of an individual´s personality.

The right to privacy is the attribute that affords each individual the right to oppose the release of information that is personal and singular. It is the right to secrecy, to defend against revealing who we are or what we do.

In this sense, intimacy is conceived of as a negative right or protection in the face of arbitrary interferences. This right recalls the notion of the Privacy Act formulated by Judge Cooley (The Elements of Torts, 1873) and recognized by Samuel Warren and Louis Brandeis at the end of the nineteenth century in the famous text The Right to Privacy: the right not to be bothered, to be alone, to be left alone.¹⁸

Given that the human genome contains a series of information linked to the very essence of the individual, it deserves special treatment from the law, because there is nothing more confidential, private, reserved, secret or internal than a person´s genetic data, and for this reason we now speak of a new field in the right to privacy: genetics.

It is necessary to point out that not all genetic information is private. There is genetic information associated with phenotypical characteristics, that is, external features that are public knowledge, such as eye color, height, complexion, etc. The genetic information that deserves protection is that of a sensitive character and is generally associated with health and a disposition toward certain illnesses of genetic origin that appear later in life. Such information is private, at least until the first symptoms appear or until the individual intentionally reveals such data.¹⁹

The grounds on which the right to genetic privacy is based can be found in different national and international documents. In the Mexican Constitution, although the right to genetic privacy is not specifically formulated, it would be derived from the right to privacy safeguarded in Article 16, which states: "No one can be disturbed in his or her person, family, residence, papers or possessions, except by virtue of a written order by a competent authority, that is grounded in and motivated by legal procedural cause". Therefore, every citizen has the right not to be disturbed in the vital environment of his or her privacy, of his or her intimacy. The objective of the right to privacy is to guarantee the individual a reserved environment for his or her life in relation to the actions and knowledge of third parties, be they public authorities or simple individuals. Nevertheless, the right to privacy is not an absolute right. As can be deduced from the above-mentioned constitutional provision, legitimate reasons can exist so that something that corresponds to the intimate sphere of an individual can be disclosed.

The interferences with this right that have been established proscribe the intervention of all public authorities, unless contemplated by the law and which represent a measure that is necessary in a democratic society for public or national security, the country´s economic well-being, the defense of order and the prevention of crime, the protection of health or morals, or the protection of the rights or freedoms of the rest of the members of society.²⁰

The essence of this right is enshrined as a negative or defensive right, which seeks to protect the intimate and private sphere of life. It can be conceived as an attribute of exclusion, exercised by the holder of the right, with the aim of limiting others from accessing or handling his or her genetic information. But the attributes of the right are not limited to the negative sense; gradually they have incorporated the authority to dispose of or control said data, manifested in the form of consent or authorization for using or handling the data or information characteristic of the private sphere of the individual.²¹

In its positive or proactive variant, " the right to genetic privacy implies the holder´s authority to demand the intervention of the public powers to provide an effective protection for genetic information".²²

Thus, the authorities should take the corresponding measures to guarantee that an individual´s genetic information cannot be accessible to anyone or can only be used for the ends for which the holder has consented.

Genetic intimacy is a substantial part of a person´s dignity and as such is based on the principles of: i) transparency, the basis for which is found in the knowledge of the information, each individual´s right to know his or her genetic characteristics and; ii) opacity, that is, each person´s authority to reserve the genetic information that he or she does not wish to make public.²³

7. Elements and Limits to Genetic Privacy and Intimacy

The right to genetic privacy can be defined as the right to determine the conditions, limits and forms of compiling, handling, using and conserving the genetic information of a person or a group of individuals.

The content of the right is thus configured on the basis of two elements, one objective and the other subjective: a) The objective element of intimacy is represented by the space, area, sphere or data that is not public. As a result, the objective element is represented by the human genome and ultimately, any tissue or part of the human body in which genetic information can be found; b) The subjective element is represented by the individual´s commitment to determine who can access the information on his or her genome and under what conditions. It is not enough that it is technically possible to access genetic information for it to be legal to possess or manage data that is so personal and intimate. Such knowledge and handling of genetic information will only be legal when it is acquired and carried out with the consent of the individual involved.²⁴

One of the normative elements of the right to genetic privacy that causes the most conflict among the doctrinaire concerns those who are the direct subjects of the data involved in genetic intimacy and those who are required to respect and protect such information.

a) The active subjects of the right to genetic privacy can only be those who have a corporal existence. Legally constituted entities do not have a human genome and, therefore, cannot have a right to genetic privacy.

The fundamental problem resides in determining if the active subject of the right to genetic privacy is the physical individual or people in general. The consequences of this are not difficult to see. If it is felt that only the physical `person´ (understood as such upon being born) is the holder of this right, the conclusion that can be extracted is that there would be beings who objectively and scientifically can be described as `human beings´ in that they possess a `human genome´ who, however, would not have a protected legal interest in terms of the immunity of their genome.²⁵

Article 22 of the Federal District Civil Code states that

Legal capacity is acquired by birth and is lost at death; but from the moment at which an individual is conceived, he or she enters under the protection of the law and receives such protection for the fact of being born for the effects declared in the Mexico City Civil Code.

If it is decided to adopt the position of protecting genetic intimacy only for people who have been born, one would face the possibility of being able to access the genetic data of all those beings who have not been born. For example, a couple who has conceived could carry out a prenatal genetic test on the fetus and

it is clear that if the prenatal diagnoses allow for an abortion to be legal to avoid the " worst`´ human beings from being born through elimination, the genetic diagnosis preimplanted in the uterus would allow for choosing the " best`´ of the embryos for selection under specific circumstances and to decide on their birth or abortion.²⁶

Another doctrinal approach sustains that from the moment of conception a person exists with all the rights recognized for any other person, since the genetic information contained in an individual will always be the same throughout the different processes of his or her intra-uterine development, as well as after his or her birth.

b) Passive subjects of the right to genetic privacy. The passive subject of a fundamental right are the public powers. The divergence appears when we wish to further extend the fundamental right, that is, when not only the authorities should protect and respect those rights, but private individuals should be warned to respect them as well.

c) Limits of the right to genetic privacy and intimacy. There are several examples in which the concrete problem has been posed regarding whether it is admissible to limit the right to genetic privacy in attending to other rights or legal effects.

One manifestation of this dilemma is the conflict between the right to genetic privacy of an individual and the interests of the blood relatives who can argue their right to protect their health for example, by determining their propensity to contract certain illnesses with a high genetic predisposition. In cases concerning the right to procreate, the question might be raised of whether current (or eventual) spouses or significant others can argue a right to protect their family and children, based on the understanding that a certain genetic predisposition on the part of one of the parents could imply harm being inflicted on the child born from such a relationship.²⁷

Another supposition arises in relation to lineage when cases emerge in which lawsuits regarding paternity recognition are filed,²⁸ in which the experts in genetics can clarify the situation.

A third scenario arises in cases of criminal investigations in which biological evidence is found (with regard to a homicide, rape, or injuries), from which considerable information, including that of a genetic nature, can be obtained.²⁹

In the aforementioned cases, genetic privacy cannot stand as an insurmountable wall impeding the search for the material truth that cannot otherwise be obtained.

8. Interpretation of the Mexican Legal Framework

There are no legal dispositions in the Mexican legal framework that specifically and autonomously regulate and protect genetic data. Nor is there a fundamental right that explicitly mentions the safeguarding of genetic data. Nevertheless, these challenges can be addressed through the mechanism of a constitutional norm that enshrines the right to privacy, understood as a " principle", as a starting point for codifying the right to genetic privacy.

Article 14.- No one may be deprived of life, liberty, or of his properties, possessions or rights, except by means of judicial proceedings before previously established courts that comply with essential formalities of procedure, and conforming to laws made previously before the case.

Article 16.- No one can be disturbed in his or her person, family, residence, papers or possessions, except by virtue of a written order by a competent authority, that is founded in and motivated by legal procedural cause.

The genetic data in their condition as data of a personal character and concretely as sensitive data, are worthy of special protection, especially codified in the Federal Law on Transparency and Access to Public Government Information in Article 3, Paragraphs II, V and VI, Article 4, Paragraph III, Article 13, Paragraph IV and Article 18, Paragraphs I and II.

Article 3.- For the effects of this Law, II. Personal data will be understood as: The information concerning an individual, identified or identifiable, including that concerning his or her ethnic or racial origin, or referring to his or her physical, moral or emotional characteristics, his or her sentimental and family life, home address, telephone number, assets and properties, ideology and political opinions, religious or philosophical beliefs or convictions, his or her physical or mental state of health, his or her sexual preferences or any similar data that might affect his or her privacy.

V. Information: That contained in the documents that those subject to the law generate, obtain, acquire, transform or preserve under any title;

VI. Classified Information: That information temporarily covered by any of the exemptions anticipated in Articles 13 and 14 of this Law.

Article 4.- The objectives of this Law are: III. To guarantee the protection of personal data held by those subject to this Law.

Article 13.- Information is categorized as classified if its disclosure could: IV. Put the life, security or health of any person at risk.

Article 18.- The following will be considered confidential information: I. That which private individuals have turned over as such to those subject to the Law in accordance with the stipulations contained in Article 19´; and `II. Personal data that requires an individual´s consent before being disclosed, distributed or commercialized as stipulated in this Law.

In turn, genetic privacy is reaffirmed with multiple legal dispositions that, although they do not explicitly regulate the obtaining, compiling, handling and circulation of an individual´s genetic information, do anticipate certain situations in which privacy winds up being transgressed — as a general rule— and especially genetic intimacy, understood as data in relation to health issues.

—The regulations defining the General Health Law in relation to health research, state in Article 13: "In all research in which people are the subject of study, the criteria of respect for their dignity and the protection of their rights and welfare shall prevail".

—The regulations defining the Law on Medical Services of the Institute for Social Security and Social Services of State Workers, state in Article 57:

For the effects of this regulatory decree, clinical files will be understand as: V. The series of written documents, graphs and images, or material of any other nature, in which the healthcare personnel make registries, annotations and certifications corresponding to their intervention in accordance with the sanitary control dispositions They are of a legal and confidential character and property of the Institute, the failure to open or integrate such material, as well as their wrongful use, shall be cause for applying the corresponding sanctions.

—Regulatory Law to Constitutional Article 5, in relation to the practice of the professions in the Federal District, states in Article 36: " All professionals will be required to strictly maintain the secrecy of matters that their clients confer upon them, except for the reports that are obligatorily under the respective laws".

—Federal District Civil Code, Article 1912: "When exercising a right that causes harm to another person, there is obligation to indemnify him or her if it is demonstrated that the right was exercised in order to cause injury, without benefits for the holder of the right". Article 1916: "Moral damage is understood as the effects that a person experiences in his or her feelings, affections, beliefs, propriety, honor, reputation, private life, configuration and physical aspects, or in the consideration that others have toward him or her".

—Federal District Penal Code, Article 213:

The person who, without the consent of the individual who is empowered to grant it and in prejudice of someone, reveals a secret or reserved communication that by whatever means he or she has come to know or which he or she has been entrusted, or uses for his or her own or for others advantage, will receive a prison term of six months to two years and a fine of from 25 to 100 times the daily minimum wage. If the person knew or received the secret or reserved communication as a result of his or her employment, position, profession, craft or occupation, or if the secret were of a scientific or technological character, the prison term will be increased by half and the exercise of the profession, craft, or occupation will be suspended for from six months to three years. When the person involved is a public servant, he or she will be discharged or suspended from his or her post for from six months to three years.

—Official Mexican Standard NOM-168-SSA1-1998, concerning clinical files, points 4.4 and 5.6:

4. Definitions. For the effects of this classification, 4.4. Clinical files will be understood to mean the series of written documents, graphic material, and images or materials of any other nature, in which healthcare personnel make registries, annotations and certifications corresponding to their intervention in accordance with the sanitary control dispositions. 5. Generalities: 5.6. In all medical care establishments, the information contained in clinical files will be handled with discretion and confidentiality, in accordance with the scientific and ethical principles that guide medical practice, and can only be disclosed to a third party through an order issued by the competent authority, or CONAMED, for medical arbitration.

The guarantees of the right to genetic privacy in the Mexican legal framework are not non-existent, but they are insufficient. Through an interpretation of the Constitution and civil law, a system of sanctions can be established for those who violate the genetic privacy of an individual. Administratively, the guarantee is partial, since there are no clear definitions and there are still many gaps in the protection of this right. On a penal level, there is an urgent need to reinforce the coverage of the right as ultima ratio.

9. Conclusions

Genetic information is part of a broader series of data that a human being possesses. For this reason, genetic data is regulated under the same guiding principles as the right to privacy. They are data of a personal character; they are a kind of data related to health and, therefore, they are sensitive data. In addition it is information that displays features that set it apart as a singular type of health data; that is, such data do not refer to present-day health, but to situations that may or may not occur in the future health of an individual.

Although there is no explicit normative framework, multiple legal dispositions do exist that through a corresponding interpretation can cover genetic privacy as a sensitive legal interest protected by law. However, this is not sufficient. It is necessary to create a special agency whose purpose is to protect individuals´ genetic privacy, even before it is effectively harmed or violated without their knowledge. It would be advisable to analyze the model of the system of privacy protection that operates in Europe and in some Latin American countries. The National Commissions for Personal Data Protection in Spain and in Argentina offer good experience, demonstrating the effectiveness of this type of agency. Perhaps the Federal Institute for Access to Information in Mexico could assume some of the functions of these commissions. Another option, of a legislative nature, involves the creation of a personal data protection law, in which all information of a genetic nature would unquestionably have to be included.

All this should be complemented with the implementation of procedures designed to protect the rights of the individual before a violation is committed or known. It would also be worthwhile to transfer the concept of habeas data to establish the category of habeas genome.

The problem, in any event, continues to be unresolved and a considerable amount of time will have to pass before the laws ensure the good use of our genes. We should not lose sight of the fact that genetic research is still in its initial stages and many different rights intersect around this issue, both for the current as well as future generations. It is time for the questions and problems derived from human genome projects, the diversity of the human genome and human proteome to be analyzed by lawyers and legislators with the necessary time and seriousness. The knowledge of the sequence of the human genome seemed a remote challenge until a few decades ago. Now all of this is a reality and there is little that that human inventiveness cannot achieve. It is the responsibility of members of society to contribute to deciding the course that research will take in Mexico. To deny the possibility of progress that can contribute to the development of genomic research is characteristic of anti-democratic societies, but this does not imply that such investigation should be offered a blank check, whereby not only people´s individual health is at stake, but the future development of humanity as a whole. We must not forget that in each person´s genetic information the history of all of us is to be found.

Notes:
1 See Romeo Casabona, Carlos María, Del gen al derecho, Colombia, Universidad Externado de Colombia, 1996, or, by the same author, Genética y derecho, Buenos Aires, Editorial Astrea de Alfredo y Ricardo Depalma, 2003.
2 Within the category of frontier issues are all those issues related to the Human Genome Project, genetic manipulation by somatic or germinal technologies, human cloning, juridical, philosophical and social status of the human embryo, creation of human beings on demand, assisted reproduction, eugenics, donating and transplanting of organs, criteria for determing death, euthanasia, abortion, environmental and sustainability issues, distributive justice and a large number of other complex topics. For further information on frontier issues, see Legal Research Institute, La bioé tica; un reto del tercer milenio, Mexico City, Instituto de Investigaciones Jurídicas, UNAM, 2002.
3 Valerio-Monge, Carlos J., " Investigación y consulta genética en Costa Rica: retos para la bioethics", in http://www.uaca.ac.cr/acta/1997may/carlos01.htm. Consulted on August 31, 2004.
4 Bioethics is a neologism attributed to Van Rensselaer Potter, medical oncologist, who understood the term as the ethics of life. It was subsequently defined by W.T. Reich as "the systematic study of human behavior in the field of the life sciences and health in the sense that this behavior is examined in light of social values and principles", in W.T. Reich (ed.), Encyclopedia of Bioethics I New York The Free Press, 1978.
5 See Soberón, Xavier and Bolívar Zapata, Francisco, " Gen y genome", in Rudomin, Pablo and Blázquez Graf, Norma (coordinators), Ciencias de la vida Mexico City, UNAMSiglo Veintiuno Editores, 2001, pp. 61-83.
6 Durán Díaz, Edmundo, " Criminología y bioética. La manipulación genética", Revista Anual de la Asociación de Derecho de la Pontificia Universidad Católica del Ecuador, year 45, no. 37, vol. I, Quito, Ecuador, 1994, pp. 46 and 47.
7 Víctor Penchaszadeh, " Genética y derechos humanos. Seminario", in Salud y derechos humanos, Memoria, Mexico City, Comisión de Derechos Humanos. 1991/13, p. 79.
8 Muñoz de Alba Medrano, Marcia, " La información genética, espejo de uno mismo", in Martínez Bullé Goyri, Víctor M., Diagnóstico genético y derechos humanos, Mexico City, UNAM, Instituto de Investigaciones Jurídicas, 1998, p. 182.
9 Idem.
10 Pérez Luño, Antonio Enrique, " Las generaciones de derechos humanos", Revista del Centro de Estudios Constitucionales, Madrid, Spain, no. 10, 1981, p. 206.
11 Matozzo de Romualdi, Liliana, " La biotecnología y el derecho a la identidad", Cuadernos de Bioética, vol. VII, no.25 (1996), p. 14.
12 Corporate author: UNESCOPRESSE, " Hacia una declaración internacional sobre los datos genéticos humanos", Article no. 2003 June 4, 2003 (Editorial Pierre Gaillard: Oficina de Información Pública — Sección Editorial), consulted on July 1, 2004 at http://portal.unesco.org/es/ev.php-URL_ID=13155&URL_DO=DO _PRINTPAGE&URL_SECTION=201.html.
13 Penchaszadeh, op. cit., footnote 7, pp. 79 and 80.
14 Valerio-Monge, op. cit., footnote 3, consulted on August 31, 2004.
15 Idem.
16 Albarellos, Laura, " Bancos de datos genéticos en Argentina y su posible utilización para conculcar derechos humanos", http://www.alfa-redi.org/revista/ data/68-3.asp, consulted on September 16, 2004.
17 See Bolis, Mónica, " Marco jurídico del genoma humano en las instituciones nacionales de salud", in Marcia Muñoz de Alba Medrano (coord.), Reflexiones en torno al derecho genómico, Mexico City, UNAM, Instituto de Investigaciones Jurídicas, 2002, p. 18.
18 Seoane Rodríguez, José Antonio, " De la intimidad genética al derecho a la protección de datos genéticos: la protección fundamental de los datos genéticos en el derecho español (Primera Parte) ", Revista de Derecho y Genoma Humano, Bilbao, Spain, no. 16, January-June 2002, p. 85.
19 Hong Enríquez, Rolando Pablo and Sautié Castellanos, Miguel, " Genómica, privacidad y asesoramiento genético", in José R. Acosta Sariego, Bioética para la sustentabilidad, Havana, Cuba, Publicaciones Acuario, Centro Félix Varela, 2002, p. 521.
20 Granados Pérez, Carlos, " Jurisprudencia del Tribunal Supremo sobre el derecho al honor, a la intimidad y a la propia imagen", in Eduardo Torres-Dulce Lifante (coord.), Derecho al honor, a la intimidad y a la propia imagen, Madrid, Spain, Consejo General del Poder Judicial, 1999, p. 214.
21 Seoane Rodríguez, op. cit., footnote 18, p. 85.
22 Ruiz Miguel, Carlos, " Los datos sobre características genéticas: libertad, intimidad y no discriminación", in Carlos María Romeo Casabona (coord.), Genética y derecho, Madrid, Spain, Consejo General del Poder Judicial, 2001, colección Estudios de Derecho Judicial 36-2001, p. 34.
23 Varsi Rospligiosi, Enrique, Bioética y derechos humanos: una aproximación a la protección del genoma in http://comunidad.derecho.org/dergenetico/. Consulted on November 26, 2003.
24 Ruiz Miguel, op. cit., footnote 22, p. 34.
25 Ibidem, p. 39.
26 Mathieu, Bertrand, Génome humain et droits fondamentaux, Aix-en-Provence/Paris, France, Economica Presses Universitaires dAix-Marseille, 2000, p. 79.
27 Article 4, Paragraphs 3 and 4 of the Mexican Constitution.
28 Articles 79, 336 and 379 of the Federal District Civil Code.
29 Articles 72 of the Federal District Civil Code.