conference proceedings of congress International Bioethics 1999. Bioethics and dignity in a pluralistic society
Table of contents
The project Genome and engineering Genetics from a human rights perspective
Ángela Aparisi Miralles
department de Philosophy del Derecho
University of Navarra
II. Biotechnology and human dignity
2. Information issues Genetics
2. Germ line manipulation Genetics
The project Human Genome and engineering Genetics are two major scientific fields in which the advances made in recent years have been spectacular. As I will try to show you, the ethical and legal implications of the project Human Genome are very different from the problems generated by engineering Genetics. But, despite the diversity of questions to be answered, at the heart of all the problems that arise are two questions that, although basic, are nevertheless of transcendental importance: firstly, what does it mean to admit that the human being possesses inherent dignity; secondly, what are the consequences, in the field of human rights, of recognising such dignity in the face of the current possibilities of biotechnology?
It is striking to the layman that, in the face of the aforementioned current biotechnological "revolution", the ethical and legal problems it generates have so far been dealt with only superficially. Issues such as the indiscriminate use of the information Genetics to select embryos to be implanted in in vitro fertilisation techniques, the carrying out of gene tests on predetermined population groups, or the obtaining of genes from indigenous ethnic groups by Western laboratories with the aim of patenting them, purpose , are proof of this. Behind this lies a deficient legal-philosophical foundation that leads to relative and changing solutions, in many cases heavily mortgaged by the economic interests at stake. For this reason, in this exhibition I will first of all make a brief reference letter of the foundations from which I start, thus clarifying my position. This will allow me to justify the assertions I will make later on.
Secondly, I will deal with the problem generated, in the field of human rights, by the project Human Genome. To do so, I will begin with a brief reference letter on the origin and current status of this project. As I will explain below, the project Human Genome is already providing immense information about the basic genetic Structures of the human being. Human rights issues are closely linked to the unlimited potential of this information, hitherto unknown to individuals.
The third part of my exhibition will be devoted to engineering Genetics. The current possibility of directly manipulating DNA fragments of a plant, animal or even human species raises serious problems in the field of human rights.
Finally, I will make a special accredited specialization to human cloning and its ethical evaluation from the perspective of human dignity.
II. Biotechnology and human dignity 
Starting with the first point, I would like to point out that, in my opinion, the notion of human dignity is core topic in order to address many of the problems generated by biotechnology today. We can trace the origins of this principle back to the 5th century BC. In Greek thought - specifically, in middle Stoicism - we find a universalist vision of the human being whose value lies, to a large extent, in clearly showing the ethical requirement of universal respect for the other1. This idea is developed and enriched by Christianity. The Jewish notion of man in the image of God is universalised. It is thus understood that every member of the human species has an absolute value, because he or she possesses a share in the absolute dignity proper to the subsistent Being.
Nowadays, it is common to refer to the axiom or principle of human dignity as the ultimate foundation of the moral and legal order2. However, on many occasions, the resource to this concept is accompanied by a blatant lack of precision. The paradox arises because, on the one hand, the appeal to dignity appears as the last and most important link in an argument. To point out that something is contrary to human dignity is presented as an irrefutable test . On the other hand, the meaning attributed to this notion is so ambiguous and variable that it sometimes becomes an empty expression3. This has led some authors, such as Norbert Hoerster4 , to maintain: "How empty the formula of the principle of human dignity necessarily is: it is nothing more and nothing less than the vehicle of a moral decision on the admissibility or inadmissibility of possible forms of the limitation of individual self-determination".
This current indiscriminate and unfounded use of the notion of dignity does not, in my opinion, prevent us from taking up this concept again and trying to ensure that, by developing its original content, it unfolds its virtuality in relation to the problems we are dealing with. As I have already pointed out, the classical idea of ontological dignity can and must be an axial principle and President in the field of genetic research, as it allows us to extract clear principles in this field5. In this respect, it is entirely appropriate that the Universal Declaration on the Human Genome and Human Rights, adopted by the XXIXth session of Unesco lecture on 11 November 1997, begins with a chapter graduate "Human dignity and the human genome"6. In what follows, I will briefly outline the content I attribute to this notion.
The traditional principle of the dignity of the person means that the human being possesses an ontological excellence or eminence, a superiority in being over the rest of creation. This places him in another order of being7. In this line, dignity implies something absolute8 and not merely relative, since the difference with other beings is not quantitative, but qualitative. From this perspective it could be argued, following Hervada, that dignity is "the perfection or intensity of being which corresponds to human nature and which is predicated of the person, insofar as the latter is the existential realisation of human nature"9.
It should be emphasised that dignity is rooted in being and is therefore connected with the notion of human nature10 and, most intrinsic to it, its end11. agreement Thus, it can be argued that the human being, possessing a radical dignity, is called upon to behave in accordance with the demands derived from this dignity, linked to the ends of his own rational nature. Dignity does not imply, therefore, autonomous rights and duties, but the human being is bound by a normativity inherent to his own being12.
In my opinion, the following consequences, among others, can be drawn from this ontological view of dignity:
1. It is a condition proper and inherent to the human being. Consequently, it must be recognised for any member of the homo sapiens category, irrespective of their state of development or their physical or mental characteristics.
2º. The rights derived from this dignity, being inherent to their being, are limited and conditioned by their very being, by their nature13 . This has an ordering to the relationship with others and some natural ends. Such ends are present in the intrinsic constitution of the human being. Dignity, therefore, implies that the human person deserves a attention adequate to his ontological status, but, in addition, he himself must behave in accordance agreement with it. There are behaviours that conform (dignified) and behaviours that do not conform (unworthy) to this status. This justifies the existence not only of rights, but also of natural duties.
3º. From an ontological perspective of dignity, the first fundamental right is the right to life, since its violation implies the radical negation of the very dignity inherent in being. Any attack on a human life translates into the destruction of dignity itself.
4º. In my opinion, this vision provides the basis for a universalist conception of human rights. This places it in the best position to face the challenges posed in this field by project Human Genome and engineering Genetics.
As I have already pointed out, the second point of my exhibition refers to the problems generated, in the field of human rights, by the project Human Genome. To this end, I consider it essential to include a brief reference letter on the origin and current status of this project.
In 1984, at the initiative of the American Energy department , the President of the University of California and the National Institutes of Health, what is now known as project Human Genome (PGH) was started in the USA. In 1988, the Office of Human Genome Research was established. Initially it had only advisory and administrative functions, but later it was transformed into the National Center for Human Genome Research. This centre, under the initial direction of award Nobel Watson, has come to have its own resources for the research.
The HMP is, from a biomedical point of view, possibly the most ambitious project in history. Several countries are currently collaborating on it and it is scheduled to be completed in 2003. This is, so to speak, the official sequencing forecast for the PGH. However, in May last year, the American researcher Craig Venter announced, to the expectation of the world academic community , the creation of a private company whose goal is fill in to sequence the human genome in just three years. Hundreds of computer experts and Biochemistry are working on project and some 35 billion pesetas have been invested initially. It is known, however, that the sequencing will be of lower quality than that achieved with the initial project .
We can state in a very schematic way that the PGH attempts to sequence the approximately 100,000 genes that make up the genome of the human species. These are found in every single cell of our organism and are made up of three billion pairs of nitrogenous instructions . At final, the project is trying to decipher all the information contained in these 100,000 genes. At present, some 30,000 genes have been sequenced.
On the development of the PGH we can distinguish three periods14:
1º. From 1984 to 1986: The sequencing of the entire three billion pairs of nitrogenous instructions that make up the human genome is planned to be carried out "grosso modo".
2ND. From 1986 to 1988: Given the impossibility of carrying out the first goal, the project was rethought in an attempt to rationalise it and sequence, first of all, the DNA fragments of greatest interest. Three main objectives were set: a) the creation of a "linkage map" to enable the search for hereditary traits in human ancestors; b) to establish a set of physical maps that would allow direct examination of the DNA, producing ordered collections of cloned fragments of this material; c) sufficient DNA sequence information to speed up the study of genes and other aspects of interest15 .
3º. From 1988 onwards: project is developed in specific countries: USA, Japan, China, Canada, Australia, and in the European Economic Community (EEC), mainly in Great Britain16 and France17. The EEC initiated a programme supported by 35 laboratories. International associations were set up coordinator, such as the Human Genome Organisation (HUGO).
The PGH is currently undergoing a spectacular development , with the target date for completion of the work being progressively shortened. Official sequencing has been brought forward from 2005 to 2003. This is mainly due to the extraordinary technological advances that have taken place in recent years. In particular, the revolution that has taken place in the field of information technology has contributed to this progress. This has made it possible to automate the processes of analysis and comparison of the sequences obtained.
There are many hopes and, at the same time, strong criticisms of the HMP. Some of them insist on the idea that exorbitant amounts are being invested which, on the other hand, could be much more profitable when applied to another subject research. As is well known, the identification of a gene that causes a given disease does not in any way ensure the possibility of a cure. On the other hand, these techniques are also often questioned because of the current feeling that science and technology are acquiring uncontrollable power18.
In the face of such criticism, it could be argued that the HGP is in fact a major investment in the future. It should not be overlooked that the information obtained from genes is enabling rapid progress in the field of somatic gene therapy. The advantages of predictive medicine cannot be overlooked.
For all these reasons, there is no shortage of researchers who have full confidence in the effectiveness of project. Thus, in the words of award Nobel Laureate Watson, "a more important set of instruction books will never be found. When finally interpreted, the genetic messages encoded within our DNA will provide us with the ultimate answers to the chemical foundations of human existence. Not only will they help us understand how we function as healthy human beings, but they will also explain, at the chemical level, the role of genetic factors in a multitude of diseases - such as cancer, Alzheimer's disease and schizophrenia - that diminish the individual lifespans of millions of people.
2. Information issues Genetics
I have pointed out the great significance of the HMP in the field of medicine. However, it should not be forgotten that this project also raises questions of great ethical and legal significance that need to be resolved. The problem is basically centred on the ambivalent potential of the information Genetics to be obtained from a specific person.
It is now possible to extract information Genetics from an individual using radioactive DNA probes. These make it possible to reveal the exact status of a mutated or altered gene. The technique basically consists of the following: fragments of labelled DNA are added to separate DNA strands. If the original DNA contains, for example, a gene linked to colon cancer, the labelled fragments will bind to it at the exact location where the gene is found. This makes it possible to determine whether that particular subject is likely to develop colon cancer. At present, 40% of colon cancers can be detected by this mechanism. In the US, easy-to-use kits that detect some 300 diseases of genetic origin are sold for 50 dollars.
The following information, in general terms, can be obtained by carrying out a gene survey:
1º. The test reveals the presence of a dominant gene for a certain monogenic disease - caused by a single gene - and therefore the disease is either present or, most probably, will be present in the future. This is the case, for example, with Huntington's chorea, a disease that causes terrible neurological degeneration.
2ND. The test reveals the existence of multifactorial disorders20. exhibition In this case, the survey reveals a propensity to develop a specific pathology, which could lead to disease when there are interactions between the genotype and certain environmental settings: for example, prolonged exposure to the action of a factor (a substance Chemistry, radiation, etc.). Its development will depend on environmental characteristics and the individual's own idiosyncrasies, so that the manifestation of the pathology is subject to great uncertainty. An example of this is glucose-6-phosphate dehydrogenase deficiency (G-6-PD).
3RD. Tests reveal that the subject is heterozygous or a carrier of an autosomal recessive gene and is therefore asymptomatic. This is the case with sickle cell anaemia, since it is only when the individual is homozygous for the trait that he or she develops the disease. These are completely healthy individuals, who will most likely never suffer from the disease, but who, because they are carriers of an "abnormal" gene, may face a segregation status 21.
In order to determine the implications of these techniques in the field of human rights, it is necessary to start from the radical transcendence staff, social and economic importance of the data that the survey will provide. We should not ignore the impact staff and social impact that access to such information can have, as well as the economic potential that it entails for, for example, businessmen or insurance companies. In fact, the possibility of obtaining information Genetics has already raised hopes in different areas and sectors of the Economics. On the other hand, the Administration of certain countries, such as the USA, has already implemented mass survey policies to determine the propensity of individuals belonging to a certain group to develop a specific disease.
Due to time constraints, I will only list a few issues related to access to information Genetics that are of radical importance in relation to our topic.
I. One of the most serious dangers associated with access to this information is the possibility of a progressive exacerbation of a eugenic mentality. PGH, as scientists have warned from the outset, lends itself particularly well to the development of eugenic ideologies. Watson, award Nobel Prize winner and perhaps the most prestigious figure of modern Genetics , proposed that at least 3% of the funds allocated to finance the PGH should be earmarked, among other things, for the study and prevention of the danger of eugenics. However, the foreseeable possibility of accessing and manipulating genes in order to produce human beings according to one's own wishes can, to an alarming degree, stimulate eugenic positions. This is particularly clear in the prenatal field. Genetic analyses are already being carried out to detect possible abnormalities in the embryo. Pre-implantation diagnostics in in vitro fertilisation techniques can be used to select the embryo with the most desirable characteristics issue . Jacques Testard, one of the pioneers of these techniques in France, maintains that this subject of diagnostics "allows parents and doctors to reject minor defects that were previously tolerated in prenatal diagnosis and the corresponding selection"22. On final, the presence of genetic "deficiencies" is often a cause for systematic abortion. Already in 1989, the European Parliament, in its Resolution of 16 March on Ethical and legal problems of manipulation Genetics and artificial insemination of human embryos, warned in point 25 of the serious danger of eugenics.
The problem is set to worsen in the not too distant future. Some researchers have claimed that by the end of this century it will be possible to create DNA probes that will make it possible to examine the entire chromosomal endowment of an individual and thus detect any conceivable hereditary defect or fragility. Therefore, the information Genetics obtainable from the moment the egg and sperm merge, giving rise to a new human being, will be of an unsuspected calibre. In the USA, Capron has stressed that this subject of tests will be systematically carried out on the "nasciturus". position For this author, even the continuation of health insurance could be made dependent on the decision to abort, as the companies will not want to pay for the costs generated by a sick offspring. Although this internship is not yet widespread, for this author it is to be expected that in a society as competitive as the American one, such a requirement will become routine23. At final, this way radically denies any dignity to the new human being, since the decision about his or her life will depend on the information revealed by a genetic analysis.
II. genetic tests carried out on adult individuals also raise a series of questions of transcendental importance for human beings. The PGH, by exposing the so-called "glass man"24 , will be a determining factor in the emergence of a discrimination modality based precisely on the notion of illness or "predisposition" to suffer from a certain pathology. Genetic tests, by deciphering the genetic code of a human being - and with it the chemical instructions constitutive of his personality, the diseases he will necessarily contract and those for which he has a certain predisposition - can become, in the hands of the Administration or private entities, source of discrimination25. The temptation to evaluate each human being by his or her Degree of "normality" or "abnormality" with respect to a typical genome will be great.
III. At the heart of this problem lies, in my opinion, the urgent need to recognise the existence of a human right to privacy Genetics, with all the legal guarantees that this entails. Compared to any other intrusive subject , the examination of the genetic map affects the deepest biological intimacy of the human being. For this reason, not only can it become a weapon of aggression in the hands of others, but it can also sometimes have a dramatic impact on the subject being examined. In fact, recent programs of study in Denmark has demonstrated the strong psychological "shock" that occurs in the person who knows that he or she will suffer from a disease Genetics in the future, even if he or she does not present any symptoms, especially if there is no known therapy.
The justification for the existence of this right is to be found in the concept of dignity referred to above. The human being, as an individual being, deserves respect, which implies, among other things, the recognition of a sphere of action and decision making in which there is no room for any external intervention. The right to freedom, understood as the right to non-interference by others in basic aspects of life staff, translates, among other requirements, into the right to privacy. In this sense, it is important to emphasise that there are more or less profound spaces of the individual being and that, precisely, the genetic data are located at one of the most basic levels. The legal articulation of this right should take into account, among others, the following points:
a) Information Genetics should never be excluded from the control of the subject under scrutiny. Unlike what happens, in general, with the data protected by the right to privacy, the acts themselves should not determine a loss of legal protection for this information.
b) Real freedom of access to information must be ensured Genetics staff . This implies that genetic testing should always be carried out with the informed and informed consent of the person being tested.
c) It is important to ensure that refusal to access or provide the information Genetics will not adversely affect any social or legal expectations or status of the subject. This implies recognition of the existence of a "right not to know", to refuse to carry out surveys. accredited specialization Particular attention should be paid here to the need to guarantee that the refusal will not have detrimental consequences in the workplace.
IV. The aforementioned right to privacy Genetics must be complemented by the recognition of a right to non-discrimination on genetic grounds. The problem regarding the enormous discriminatory potential of information Genetics is not a new issue. In fact, the discussion on the discriminatory consequences of the information obtained from genetic probes began some years ago in the USA26. Also on this occasion, it has been the same scientists who, aware of the extraordinary knowledge that the project Genome will be able to reveal about human beings, have warned about the possible discriminatory consequences of the analyses, not only in social and even family life27, but also, and in a special way, in the field of insurance, health and employment28. In this respect, for example, Hans Martin Sass, Director of the Bochum Centre for Medical Ethics and the European Programme of the high school Kennedy Ethics Programme has stated that "In a basic climate of phobia towards high-tech forms, fears have arisen concerning possible future discrimination of the handicapped and retarded, discrimination in obtaining a work space, attendance , health and in taking out insurance"29. Scientists, on the other hand, have stressed that it is not enough at this point to underline the unethical nature of such practices. It is necessary that the legislation of the various countries reacts to this new status30 and also that the jurisprudence prepares itself to be able to deal with these new conflicts.
In particular, in the field of work, it is clear that information Genetics can make a decisive contribution to improving the protection of individuals and is a good way of preventing occupational illnesses financial aid . But there is also no doubt that this knowledge, if the appropriate legal measures are not taken, will have undesirable consequences. The information obtained by means of the survey will serve to grade the resistance to the environment of employee, operating, in final, as a selection criterion and, therefore, a discriminatory one31.
On the other hand, it should be borne in mind that sometimes there is no certainty that the disease will be present. Dissemination of genetic results would lead to the creation of a new category of patients, the "predisposed", who would be subject to severe discrimination. As Capron points out, the employer would avoid any contractual relationship, not only because of the expenses that the worker could foreseeably incur because of his illness, but also because, if he were to suffer from it, he could blame the conditions of business for triggering his pathology. This, in turn, would generate a higher outlay for the employer in terms of legal costs, compensation, etc....32.
It is also important to ensure that there is no indirect discrimination in cases where tests reveal that the subject is merely a carrier of an autosomal recessive gene and is therefore asymptomatic. We are dealing with individuals who are completely healthy but who may nevertheless have diseased offspring. In those countries, such as the USA, where health care is private and usually paid for by the employer, there is a clear fear of increased health care costs due to such sick offspring, which can lead to strong discrimination in access to the labour market.
Finally, it should be borne in mind that a large issue of genetic diseases are linked to race33. Indiscriminate genetic testing may, in some cases, be a cover for clearly discriminatory or racist policies34 .
As I pointed out earlier, the application of new molecular techniques to genetic analysis has made it possible to act directly on DNA. It is no longer a matter of obtaining information from genes, but of "working" with them, modifying them and inserting them into the same organism from which they have been extracted or into others.
In the field of engineering Genetics, both in the animal and plant world, by altering the genetic heritage of the organism, advances have been quite spectacular. In the plant world, it is possible, by grafting DNA fragments, to create transgenic plants of both quantitative and qualitative high performing . research At the University of Louisiana, for example, potatoes with a higher protein content than meat are being produced. As early as October 1994, the International Rice Research Centre high school in the Philippines announced that it had developed a prototype "super rice" variety that could increase the annual rice harvest by 100 million tonnes - enough to feed 450 million people35. Biotechnology has also been used to produce transgenic animals, that is, products of the incorporation of foreign genes incorporated into the germ line.
This has led to the existence of patent applications seeking to register these new species. The problem with patents, however, is that they leave the power that comes with the ability to dispose of these organisms in the hands of big capital. It is easy to imagine what it would mean for an underdeveloped country to have, for example, the possibility of producing the aforementioned potatoes with a higher protein content than meat, or rice seeds that produce 100 times more than natural ones. It seems clear that the legal enshrinement of a right to industrial property and patents that ignores these aspects would be in contradiction with the value of solidarity.
So far I have referred to engineering Genetics in relation to plants and animals. In these cases a duty of respect for animals and the need to ensure ecological balance would be at stake. A qualitatively different chapter is that of the manipulation of human genes. While, as we have seen, in the field of molecular analysis there is a subject problem linked to the consequences arising from the vast amount of information revealed by the study of human genes, the manipulation of human genes highlights a different dimension. It is no longer a question of regulating the use of information, but of establishing the framework for intervention on human beings themselves, passing on the modifications to future generations.
So far, scientists have been rather cautious. Some have imposed self-moratoria on themselves to act in the field of human germ cells. This is a real novelty, because never before have researchers themselves made it so obvious that they need to set limits on their research. group Thus, for example, it is worth noting that on 19 July 1974, a Manifesto was published in three leading international scientific journals by a group of pioneering scientists in the new molecular technology, led by Nobel laureate Paul Berg, award . . It called for a voluntary postponement of a series of experiments36. Likewise, the Asilomar moratorium37 , based on the distinction between manipulations carried out on human somatic cells and germ cells, attempted to halt genomics on the latter. This is due, in part, to the certainty that current knowledge cannot ensure that such interventions would not have irreparable consequences.
In order to assess the human rights implications of these techniques, it is necessary to start from the basic distinction between somatic gene therapy and germline manipulation Genetics .
It is a technique that aims to cure disorders or diseases by introducing "healthy" genes into the somatic line to replace the "sick" ones. The technique consists, "grosso modo", in extracting cells from an organism whose load is modified Genetics to eliminate a specific pathology. They are then reinserted into the organism in vehicles that enhance their reproduction. The aim is to ensure that genetically "healthy" cells make up a significant percentage of the diseased cells, so that the individual can overcome his or her illness38. Somatic line manipulations do not involve modifications that can be passed on to offspring. The technique is currently being used with relative success39.
From a human rights perspective, it can be argued that this manipulation subject Genetics , as it does not alter the whole genome of a person and is not transmissible to offspring, can be compared to a surgical intervention. In this sense, it would be necessary to guarantee:
1º That the intervention is carried out with the patient's informed consent. In other words, the patient must be aware of the effects and consequences of the technique to be applied, and must freely accept it as a means of healing. It is worth insisting on this last point so that informed consent does not become a rhetorical figure40 .
2º If an experimental study is being carried out, in addition to the aforementioned informed consent, all the requirements usually required in clinical trials must be present. I would highlight three:
a) The need to ensure that the technique is sufficiently experienced.
(b) There is a probability that, at a minimum, its application will not adversely affect the health of the subject.
(c) It must be ensured that the consent may be withdrawn at any time.
The European Parliament pronounced on this manipulation subject in the aforementioned Resolution on Ethical and legal problems of manipulation Genetics and human artificial fertilisation. The regulation appears in points 22 to 26. It is stated in point 22 that:
report " Genetics considers the transfer of human somatic cells as a basically defensible form of treatment, provided that the person concerned is duly informed and his or her consent is obtained".
As I have already pointed out, point 25 warns against the danger of eugenics. It argues for the need to "reconsider the concepts of disease and defect Genetics to avoid the danger of defining in medical terms as diseases or hereditary defects what are merely deviations from normality Genetics".
Also the European Bioethics agreement , elaborated within the committee of Europe, states, in its article 5, that no research action may be taken on a person in subject of health without his or her free and informed consent.
2. Germ line manipulation Genetics
Germline manipulations are carried out in the early stages of the embryonic development . They involve modifications transmissible to all offspring. This could include germline gene therapy, eugenic manipulation Genetics , and any other subject of techniques for experimental or research purposes, such as the creation of hybrids by engineering Genetics and even cloning.
In relation to techniques of a therapeutic nature or germline gene therapy, it should be pointed out that the aim pursued is to overcome a disease Genetics of the embryo. Therefore, its ethical evaluation will be radically different from that of other subject interventions. The following considerations should be made regarding germline gene therapy:
a) Given the current state of science, it is very difficult to predict the consequences of these techniques for a human being. For example, gene modification in pigs has, in many cases, resulted in deformed animals or sudden death. In addition, the alterations are passed on to offspring.
b) But, on the other hand, I have already pointed out that nowadays, with the refinement of detection techniques Genetics, when the existence of a genetic problem in the embryo is glimpsed or suspected, it is automatically discarded, resorting to systematic abortion.
That is why I believe that the most respectful attitude towards human rights involves treating the embryo as what it is, a sick human being. If the embryo is recognised as having a right to health, it should be given the remedy for its problem under the same conditions as an adult human being. This would mean that, when gene therapy is more advanced, it could be applied to him after weighing up the risks and benefits. The Bilbao Declaration, the result of the International meeting held in that city with the degree scroll "The Law in the face of the project Human Genome", leaned in this direction.
A different matter is, as I have already pointed out, the manipulation of human DNA for purposes other than the elimination or reduction of diseases in the embryo. In this sense, eugenic manipulation Genetics would have the aim of obtaining a "tailor-made" human species, eliminating certain traits or enhancing characteristics considered desirable. Thus, for example, the attempt to produce human beings with a special strength for physical work. Although some deny that molecular engineering techniques Genetics could achieve such results, it is true that pioneering scientists in gene therapy, such as W. French Anderson, have already expressed their concern41.
Also the creation of hybrids with human genetic material is a non-therapeutic intervention Genetics . Recently, the American company "Advanced Cell Technology" announced that it has succeeded in developing hybrid cells with human and cow genetic material. The technique consists of introducing DNA from human somatic cell nuclei into previously enucleated cow eggs42 . The fusion of the two elements was performed with an electric shock.
The company claims, in defence of these techniques, that its goal is to produce organs for transplantation while avoiding rejection problems. In my opinion, this manipulation of human DNA raises irresolvable ethical problems. In this sense, the aforementioned Resolution on Ethical and legal problems of the manipulation Genetics and human artificial fertilisation, which prohibits the production of hybrid embryos containing hereditary information of different origin, when human DNA is used, expressed itself in this sense.
The real possibility of implementing the aforementioned techniques requires a return to the notion of human dignity and to the demands that should derive from this principle. This takes the form, among other things, of the need to recognise and give effect to new human rights. Among them, the right to the integrity of one's own genetic heritage. This right would seek to guarantee that each human being is himself, preventing any interference in his constitution Genetics that is not strictly of a therapeutic nature43. The subject of this right would be the human being existing from the moment of conception.
This position is based on a vision of the human being as a "unified totality", in which both the psychic and physical dimensions are constitutive of the very essence of man44. I would like to insist on the idea that there is a profound value in each human being being being himself and not coming into the world programmed by the wishes or expectations of his parents, of society, or of other interests. It is, in the words of Jost Herbing, the right to be the product of chance. In my view, unpredictability is preferable to any ideal or stereotype of a person proposed or imposed by an external will. This is because the value of a human being lies entirely and radically in his or her being, and not in his or her external characteristics. This implies ethically excluding the use of manipulation Genetics to produce what we could call "optimal men". In this sense, there is a limit that manipulation Genetics must never cross. Otherwise it would lead to the domination of man by man, to a new modality of slavery in which an important part of the integrity of a human being would depend on the will of others. It would also imply the consecration of a new subject of racism, by implicitly accepting that it is the genes that define and determine the quality of a human being.
On the other hand, it should be pointed out that in order to guarantee the human right to integrity Genetics it is not enough to ensure that the genetic heritage will not be manipulated. This is because the genome does not only have a dimension Biochemistry . The expression of genes is not absolutely predetermined. It changes in response to various organic, psychological and other stimuli. As award Nobel Dausset states, this is especially evident in the first months of a human being's life. Therefore, following Vila-Coro, it is important that the right to integrity Genetics also includes, in a dynamic sense, the protection of the natural habitat in which the genome must develop. Thus, for example, if a human embryo is implanted in the uterus of an animal, the translation of the genetic code into proteins will have taken place in a non-human habitat, which could alter the structure Genetics.
It must also be borne in mind that the concept of genetic heritage does not only have an individual or particular dimension, but also a public one. In this sense, Knoppers45 points out that "in the context of the new Genetics, ensuring and respecting human dignity cannot be limited to a conception of the natural rights of the person that determines the immutability Genetics of the individual at birth. Respect for human dignity also means the need to speak of collective responsibility for the human genome". We cannot forget the connection of the structure Genetics of a human being with future generations, since the manipulation Genetics in the germ line implies mutations that can be transmitted to them. The value of diversity Genetics, core topic, on the other hand, for the survival of the human species, must also be emphasised.
The Parliamentary Assembly of committee of Europe already referred specifically to the right to integrity Genetics in its Recommendation 934 of 1982. For its part, report A-2-327/88 of the Committee on Legal Affairs and Citizens' Rights of the European Parliament maintains that "the use of embryos for research which denies their human character and subjects them arbitrarily to certain purposes violates human dignity....". Man can never be a thing, but always has a personality... This must also be the highest criterion for the evaluation of the research carried out on embryos" (point 1.5). For its part, the aforementioned 1989 Resolution maintains, in relation to intervention on the human germ line, the prohibition of all experiments that seek to modify the genetic code of human beings. It states that:
"0. It also considers that a partial modification of the inheritance information constitutes a falsification of the identity of the person which, as this is a highly personal legal right, is irresponsible and unjustifiable".
The line taken by the aforementioned Resolution has been followed by some European countries. Specifically, in Spain, the new Penal Code punishes manipulation Genetics in its article 159. In section 1 of this precept, it refers to the manipulation of human genes with alteration of the genotype and a purpose other than the elimination or reduction of serious defects or illnesses. This technique is punishable with a prison sentence of two to six years and special disqualification from employment or position public, profession or official document for seven to ten years. For its part, section 2 of the same article typifies the conduct consisting of altering the genotype through serious imprudence46.
A special accredited specialization deserves, due to the public repercussion of the experiment at high school Roslin in Scotland47, the evaluation of the cloning of human beings from the perspective of human dignity48. Already a few years ago, George Washington University succeeded in producing more embryos with the same genome from a human embryo in a laboratory. However, it was after the cloning of sheep by the aforementioned high school Roslin that the experiment was completed. It opened a great controversy, as it was demonstrated that a clone could be obtained from a differentiated cell of a higher mammal50.
The social and ethical discussion that has emerged since then has focused almost exclusively on the problem of the moral legality of cloning human beings51 . Initially, various bodies and institutions insisted on the moral seriousness of instrumentalising human beings by means of this technique. The social pressure was so strong that legal mechanisms were even approved, with unusual speed, to prevent such behaviour subject 52. Reactions were produced both at the level of international organisations and in the domestic law of various countries. Thus, on 18 March 1997, the WHO issued a Declaration on cloning. The WHO considers that the use of cloning to reproduce human beings is ethically unacceptable because it violates the respect due to the dignity of the human person and the protection of the safety of human genetic material. The WHO adopted, as a basis for its Declaration, the conclusions reached in 1992 by the scientific group set up to study the technical aspects of medically assisted procreation, on the framework of the research and development programme in human reproduction. The group expressed the need to respect the indispensable freedom in scientific research , but also stressed the need to prohibit extreme forms of experimentation, such as cloning or the modification of the genome of germ cells. Also at international level, the European Parliament Resolution of March 1997 and the initiatives of committee in Europe are worth mentioning. All of them strongly condemn human cloning.
Nowadays, however, the discussion has taken a different direction. In contrast to the ontological approach of subject , rooted in the notion of human dignity, other lines of argument have recently proliferated. The possibility of legally admitting the cloning of human beings is currently being studied in various forums, taking into account, from a consequentialist perspective, the motives that determine the essay or its subsequent consequences. From this point of view, it is not questioned whether cloning human beings is or is not respectful of human dignity. Basically, the question is whether it is useful for the rest of the population53 . In this way, its convenience would have to be calibrated by means of a process of weighing up subject benefit/cost. A consequence of this new approach is the current distinction between "therapeutic cloning" and "reproductive cloning".
The first modality would basically aim to obtain organ54 and tissue reserves. It would also allow the study of cell differentiation, which is of great importance for transplants55. Another purpose would be to obtain genetically identical subjects for scientific programs of study . It is clear that, in order to carry out a clinical essay , it would be of great financial aid value to have a population as homogeneous as possible, in a similar way to the way animal experimentation is carried out.
For its part, "reproductive cloning" would make it possible to achieve, among others, the following objectives: to replicate individuals of great genius or beauty56, to reproduce a loved one57, to achieve an ostensible immortality facilitated by asexual reproduction, especially in the case of cloning by nucleus transfer, or simply to obtain children in a sterile couple. The issue of embryos that could later be transferred in an in vitro fertilisation treatment58 could be increased. On the other hand, there is the possibility of creating embryos for freezing in anticipation of possible problems in obtaining gametes in the future. However, this carries the additional risk of producing alterations or lesions in the embryo that will later be implanted.
The possibility of using the technique with the goal to obtain healthy individuals has also been raised. It is maintained that it would be an option for couples with a serious risk of transmitting genetic diseases. If the cloning technique were allowed, an embryo could be analysed in detail. If the embryo is healthy, its clone would be implanted in the mother's womb. This technique has been presented by some as an altruistic option as it would facilitate the elimination of diseases in the future. However, it has also been criticised as sacrificing one twin for the benefit of the other.
It is clear that an exclusively utilitarian and consequentialist approach would admit, in view of its beneficial social effects, some cases of human cloning. However, this is not the only parameter that should be considered in this topic. I have already pointed out that, in my opinion, when what is at stake is a human being, due respect for his or her dignity is required. In this sense, I consider that the possible benefit to society of cloning human beings does not in itself justify this technique. The attack on human dignity is particularly clear in the case of so-called "therapeutic cloning", since it instrumentalises an embryo and undermines the biological uniqueness of the human subject. The use of these techniques implies the destruction of the cloned embryo, and the right to life would therefore be at stake. Indeed, the Admissions Office of cloning in these cases can even lead to the commercialisation of the human body and its parts. In this sense, the president of the group European Group of Advisers on the Ethical Implications of Biotechnology (GECIEB), Noëlle Lenoir, has stated that instrumentalisation begins at the moment when the technique of cloning a person is used to satisfy a need of a staff or utilitarian order59.
For their part, reproductive cloning techniques represent an attack on the biological uniqueness of the human subject. In my opinion, the recognition and guarantee of the dignity of every member of the human species implies, in turn, respect for its uniqueness and unrepeatability Genetics. Each member of the human species must be the result of a unique and unrepeatable recombination of two genomes60. In this sense, there has recently been talk of the need to recognise the existence of a new human right: the right to individuality Genetics. This would be the right to individual uniqueness and unrepeatability, to possess one's own original genetic heritage and to express it without interference that could damage its integrity or diminish its originality. In final, this new right would seek to guarantee that each human being is himself, a unique and unrepeatable being due to his genetic factors, who can realise his vital project , without being programmed by expectations, desires or interests of others or strangers61. This is because cloning ignores the individualised and dignifying value of being wonderfully different from others.
On the other hand, it should not be forgotten that reproductive cloning can easily lead to an exacerbation of eugenics. In this sense, it has been argued that cloning, by making favourable genes more frequent in the human population62 , brings the eugenic danger closer to reality.
Finally, it is important to insist that the lack of safety of these techniques becomes a further ethical objection63 . Regardless of other considerations, only the possibility of mass elimination of human embryos and their possible deformities is reason enough to call for a moratorium64. In this sense, we must take into account the cloning of mammals: in order to clone an animal, a large number of embryos have had to be used, resulting in deformities and death in many of them65. On the other hand, such practices may threaten the balance of biological diversity, with unintended but extremely dangerous consequences for future generations. Although there is as yet no clear evidence of such risks, doubt alone should impose on researcher the moral duty of extreme caution and the desirability of controlling such techniques.
I have already mentioned above that, faced with the problem of human cloning, the law has been unusually quick to react. Thus, on 12 March 1997 the European Parliament adopted a Resolution on cloning66 . It takes into account the previous Resolution on the ethical and legal problems of engineering Genetics and artificial insemination of 1989, and that on human cloning of 1993. It is categorically stated that the cloning of human beings cannot be justified or tolerated in society as a serious violation of fundamental human rights, contrary to the principle of equality between human beings because it allows eugenic and racist selection of the human species, and offends the dignity of the human being. The Resolution calls for the adoption, at international level, of ethical standards on biotechnology, and for the non-financing of human cloning trials. It also stresses that the direct protection of the rights of individuals takes precedence over any social or third party interests.
Also worth mentioning is the protocol on Human Cloning developed by committee of Europe67. This is an additional text to the Convention on Bioethics. The document prohibits any scientific intervention aimed at the creation of identical human beings. It considers that such conduct implies an instrumentalisation of the inherent dignity of every member of the human race, denying the right to their identity Genetics68.
On the other hand, many countries have legally prohibited human cloning. Germany, for example, punishes it in the Embryo Protection Act of 13 December 1990. This rule also makes attempts punishable. The most forceful measure was taken in Italy.
In Spain, the Law on Human Assisted Reproduction Techniques69 sanctioned, as a very serious offence management assistant , "creating identical beings by cloning or other procedures aimed at race selection". Subsequently, the 1995 Penal Code raised the conduct previously considered as an offence to a criminal offence management assistant. Thus, art. 161.2 of our penal text punishes "the creation of identical human beings by cloning or other procedures aimed at race selection". The penalty foreseen is imprisonment for 1-5 years, and special disqualification from employment or position public, profession or official document for 6-10 years.
García Miranda maintains that, in this case, the purpose of criminal intervention is not to increase the obstacles to scientific research , but should be understood as the last resource "to avoid harm to legal interests, which in the case of cloning would be the right to unrepeatability, identity, individuality and the very authenticity of the human being"70.
summary , the problems referred to highlight the fact that today's man finds himself, today more than ever, faced with fundamental choices that will decisively determine the future of the human species. In the words of Herranz71 , in relation to germ line genetic interventions, it can be maintained that, to a large extent, the destiny of humanity will be strongly determined by the answer to the question of whether the human embryo is a thing, a human being, or an intermediate entity yet to be defined. What we are debating is, in short, the very notion of a human being and the meaning of its dignity. Respect for this dignity means that, in the scientific field, not everything that can be done should be done.
Notes
(1) Humanitas, or awareness of the equal dignity of men and the need for equal respect for all men, appears for the first time in the work of Panaetius of Rhodes. Subsequently, Cicero was the author who most clearly reflected this idea in his work (see on this topic J. Ballesteros, Sobre el sentido del Derecho, Tecnos, Madrid, 1986, 112).
(2) Our Constitution, in its article 10.1, maintains that "the dignity of the person, the inviolable rights which are inherent to him..... are the foundation of political order and social peace". For its part, the German Constitution, in its article 1, maintains that "the dignity of man is inviolable". In relation to the higher values of our Constitution, Peces-Barba has pointed out that "human dignity is the foundation and the reason for the need for these higher values, it is the ultimate root of everything, and I believe that its inclusion among the higher values is not methodologically correct, since these are the ways to make human dignity real and effective" (Los valores superiores, Tecnos, Madrid, 1984, 85-86). Also for León, "respect for the dignity of man, by the fact of being a person and free, is the foundation of all ethics" (F. J. León, Dignidad Humana, Libertad y Bioética, in "Persona y Bioética", no. 1, July-September 1997, 143).
(3) It must be admitted, in the words of J. González Pérez, that "in the name of dignity, attempts are made to justify radically contrary solutions to such fundamental issues of our times as the admissibility of certain forms of manipulation Genetics, abortion, the availability of human organs, medical experiments on people and euthanasia" (La dignidad de la persona, ed. Cívitas, Madrid, 1986, 19 and 20; see also T. Melendo; L. Millán-Puelles, Dignidad: ¿una palabra vacía? Eunsa, Pamplona, 1996).
(4) N. Hoerster, Acerca del significado del principio de la dignidad humana, in En defensa del positivismo jurídico, trans. J.M. Seña and revised by E. Garzón Valdés and R. Zimmerling, Gedisa publishing house, Barcelona, 1992, 91.
(5) See A. Aparisi, El project Genoma Humano: reflexiones sobre sus relaciones con el Derecho, Tirant lo Blanch, Valencia, 1997, 55.
(6) In January 1998, the high school de Bioética de la Fundación de Ciencias de la Salud, held in Madrid a workshop on Science and Ethics of Cloning. Point 5 of its conclusions reference letter refers to human dignity in the following terms: "The supreme principle of ethics is and cannot but be respect for the dignity of each and every human being. This is the criterion that must always guide judgements about the rightness or wrongness, goodness or badness of our actions" (Vid I. Bravo, La clonación de seres humanos, La clonación de los seres humanos. Bravo, La clonación de seres humanos a discussion, "Mundo científico", 1998, 189, 36).
(7) See, in this sense, J. Hervada, Lecciones propedéuticas de Philosophy del derecho, Eunsa, Pamplona, 1992, 449.
(8) This was the sense that Thomas Aquinas already attributed to the term. He held that "the term dignity is something absolute and belongs to the essence of the subject" (Thomas Aquinas, Summa Theologica, I-I, q. 42, a. 4, edition of Library Services de Autores Cristianos, Madrid, 1993, 411). In another passage he maintained that "any proposition whose predicate belongs to the essence of the subject is self-evident" (Thomas Aquinas, Summa Theologica, I-II, q. 94, a. 2). He therefore used the term dignity as equivalent to axiom. In fact, if dignity, as an intrinsic dimension of the human being, has an ontological character, rather than something demonstrable, it is, as Thomas Aquinas understood, the premise of the demonstration.
(9) J. Hervada, Lecciones propedéuticas de Philosophy del derecho, op. cit., 449. On the other hand, it is worth remembering that the possibility of approaching the concept of dignity will depend closely on the theory of knowledge from which we start. It is obvious that empiricism, by reducing the whole knowledge to sensible experience, will not be able to admit the idea of dignity, since it is a universal. Universals are ideas, concepts and statements that our mind elaborates, starting from partial data , but which do not lack a certain concordance with reality. The universal is a construction of reason, but, at the same time, it is a reflection of reality.
(10) As is well known, criticism of this approach has been based, among other arguments, on the ambiguity of the term "nature". In my opinion, the problem is solved when a teleological perspective is adopted. On this topic vid. A. M. González, Moral, razón y naturaleza, Eunsa, Pamplona, 1998. On the current discussion on the viability of resorting to the concept of nature as a moral guide vid. D. Callahan, Can Nature Serve as a Moral Guide?, in "Hasting Center Report", November-December 1996, 26 (6), 21-22. At the same issue see also L. R. Kass, The Trouble Dream of Nature as a Moral Guide and B. G. Norton, Moral Nature as a Moral Guide, in "Hasting Center Report", November-December 1996, 26 (6), 21-22. G. Norton, Moral Naturalism and Adaptive Management.
(11) Thomas Aquinas points out that, insofar as what is most intrinsic to a thing is its end, it follows that what is most intrinsic to human nature is not any voluntary act, but that voluntary act which is directed to that end (Summa Theologica, I-II, q. 6, a. 1). In this sense, A. M. González points out: "what constitutes the vegetable as a vegetable and distinguishes it from the animal is an end which the vegetable cannot transcend..... Similarly, what constitutes the animal as an animal and distinguishes it from man is an end that the animal cannot dispose of...In the same line, what constitutes the human being as a human being -his nature- and distinguishes him from God is another end that man cannot transcend..... This excludes the possibility of attributing to man absolute autonomy. Not only in his being, but also in his operation, man has something given: the first principles; they are what define his specific nature" (A. M. González, Naturaleza y dignidad, Eunsa, Pamplona, 1996, 97-99).
(12) In this sense, we could affirm, following Spaemann, that the human being is not only "an end in himself for himself", but an "end in himself par excellence". As this author points out, "the mouse is also an end in itself for itself, but this is not so for the cat... If man is only a value for himself and not an "end in himself", one cannot speak of "loss of value" when a human life disappears: "If all value is relative to the subject that values, one cannot call the complete annihilation of all the subjects that value a crime.... Only the value of man "in himself" - not only for men - makes his life sacred and confers on the concept of dignity that ontological dimension without which it is not even possible to think of what this concept is meant to express" (R. Spaemann, On the Concept of Human Dignity, in "Person and Law", XIX, 1988, 20-21). Such a conception of human dignity is clearly separate from the Kantian-inspired current. The latter, as is well known, understands dignity in an immanent way, detached from the idea of human nature, considering the latter as a merely empirical written request , devoid of normativity. In his Metaphysics of Manners Kant refers to "the dignity of a rational being who obeys no other law than that which he gives himself... as a legislator in the realm of ends, as free from all natural laws and obeying only those which he gives himself... Autonomy is thus the foundation of the dignity of human nature and of all rational nature" (E. Kant, Foundations of Human Nature). Kant, Fundamentación de la metafísica de las costumbres, trans. M. García Morente, Real Sociedad Económica Matritense de amigos del País, 1992, 92-94). In final, dignity is fundamentally translated into the moral autonomy of conscience.
(13) They are not, therefore, rights derived from the legal attribution of personality, which in turn is granted by the possession of rationality and the capacity for moral self-determination. In this sense, Spaemann points out that human rights "must be recognised for every being descended from man and from the first moment of his natural existence, without it being permissible to add any additional criteria" (R. Spaemann, The Natural and the Rational: Essays in Anthropology, trans. D. Innerarity and J. Olmo, Rialp, Madrid, 1989, 50). For this author, "if the claim to belong to human society were left to the judgement of the majority, we would have to define by virtue of which properties one possesses human dignity and can demand the corresponding rights. But this would be to do away with the very idea of human rights. These presuppose that every human being, as a member of humanity, can assert his rights against others, which in turn means that membership of the species homo sapiens can only be based on that minimal dignity which we have called human dignity" (R. Spaemann, On the Concept of Human Dignity, in "Person and Law", XIX, 1988, 25). A.M. González argues that "precisely this dignity is put at stake when anyone arrogates to himself the right to decide which beings deserve the name of person and which do not. Because then they are easily considered as a mere means, and are subjected to utilitarian calculations. The weak, the unproductive, the crippled, children, the sick, could be progressively excluded from the definition of personhood, and the exclusion could easily be justified on the grounds of state and ultimately written request of convenience. In the face of this, it is worth remembering that dignity, unlike value, is not commensurable" (A. M. González, Naturaleza y dignidad, Eunsa, Pamplona, 1996, 54-55).
(14) outline A complete chronology of the chronology of the project Human Genome, its main leaders and the institutions that have supported it can be found in R. M. Cook-Deegan, Las raíces de la polémica: los orígenes del project Genoma Humano, in AAVV, El Derecho ante el project Genoma Humano, Tomo I, Fundación BBV, Madrid, 1994, 77-83.
(15) R. M. Cook-Deegan, The Roots of the Controversy: The Origins of the project Human Genome, op. cit., 67 ff.
(16) On the project Genome in the UK see. T. Vickers, Un approach Británico, in project Genoma: Ética, Bilbao, Fundación BBV, 1991, 85-92.
(17) On the development of the project Human Genome in France, see. J. F. Girard, The project Human Genome. French perspective, in project Genome: Ethics. op. cit., 65-70; information on the development of the project in Italy can also be found in P. Vezzoni, Scientific and ethical aspects of the project Human Genome in Italy, in project Genome: Ethics. op. cit., 93 et seq.
(18) K. Bayertz, Ethics, genetic engineering and the public, in H. P. Bernhard; C. Cookson, C. (eds.), Genethics, Ciba Communications, 1995, 59.
(19) J. D. Watson, The Human Genome Project: Past, present and future, "Science", 248, 1990, 44-49.
(20) A. M Capron, Which Ills to Bear?: Reevaluating the "Threat of Modern Genetics, in Beauchamp, T.L. & Walters, L., Contemporary Issues in Bioethics, Kennedy Institute of Ethics and Department of Philosophy of Georgetown University, California, 1994, 633.
(21) P. R. Billings, et al., Discrimination as a Consequence of Genetic Testing, in Beauchamp, T.L. & Walters, L., Contemporary Issues in Bioethics, op. cit., 639.
(22) J. Testard, J., The new eugenics, in Bernhard, H.P.; Cookson, C. (eds.), Genethics, op. cit., 18.
(23) A. M. Capron, Which Ills to Bear: Reevaluating the "Threat of Modern Genetics, in Beauchamp, T.L. & Walters, L., Contemporary Issues in Bioethics, op. cit., 633.
(24) The expression belongs to J. Gafo, 10 palabras core topic en Bioética, Pamplona, Verbo Divino, 1993, 227.
(25) Vid. L. Uzych, Human Genetics, Bioethics, and the Law, in "Journal of the National Cancer Institute", 1992, vol. 84, No. 2, January 15, 128.
(26) employment Likewise, as is well known, the use of psychophysical, mental and biological tests to examine large groups and impose policies of selective eugenics and optimisation of human resources is not new either (Vid. J. L. Luján, Tecnologías de diagnóstico y contexto social: de los test psicofísicos a las pruebas de ADN, in J. Sanmartín, S. H. Cutcliffe, S. L. Goldman, M. Medina, (eds.), programs of study sobre Sociedad y Tecnología, Servicio publishing house Universidad del País Vasco, 195 y ss).
(27) See report Genetic Information and Health Insurance prepared by the National Institutes of Health and the National Center for Human Genome Research, in "Revista de Derecho y Genoma Humano", op. cit., 237- 239.
(28) Vid. P. R. Billings, et al., Discrimination as a Consequence of Genetic Testing, in T. L Beauchamp & L. Walters, Contemporary Issues in Bioethics, op. cit. L Beauchamp & L. Walters, Contemporary Issues in Bioethics, op. cit., 637-643; D. Nelkin, L. Tancredi, Dangerous diagnostics: the social power of biological information, Basic, New York, 1989; A. Motulsky, Impact of genetic manipulation on society and medicine, "Science", 219, 1983, 135-140; TH. Murray, Warning: screening workers for genetic risk, "Hasting Center Report", 2, 1983, 5-8; N. A. Holtzman, Recombinant DNA technology, genetic tests, and public policy, "American Journal of Human Genetics", 1988, 42, 624-632; P. Billings, Research in genetic discrimination, "American Journal of Human Genetics", 1988, 43, 225; L. Uzych, Genetic testing and exclusionary practices in the workplace, "J. Public Health Policy", 1986, 7, 37-57.
(29) H. Martin Sass, A German point of view, in project Human Genome: Ethics, op. cit., 73.
(30) Vid. P. Vezzoni, Scientific and Ethical Aspects of the project Human Genome in Italy, in project Human Genome: Ethics, op. cit., 98.
(31) Vid. N. A. Holtzman, Ethical Considerations in Genetic Testing, summary presented at II Workshop on International Cooperation for the Human Genome Project: Ethics, Valencia, October, 1990.
(32) J. M. Peris, La identificación Genetics y los derechos fundamentales, in "Arbor", December 1992, CXLIII, 564, 56 et seq.
(33) This would be the case, for example, with sickle cell anaemia. Sickle cell anaemia is a disease characterised by a disorder of the red blood cells in the blood that can lead to death. It affects the African-American population at an estimated rate of 1 in 625 individuals. It is also estimated that 1 in 12 African-Americans is a carrier of the trait. On the origin of this genetic disorder see. J. Sanmartín, Ingeniería Genetics Ingeniería humana: assessment y percepción pública de las tecnologías genéticas, in J. Sanmartín; S. H. Cutcliffe; S. L. Goldman; M. Medina, (eds.), programs of study sobre sociedad y tecnología, Servicio publishing house Universidad del País Vasco, "Anthropos", 241 y ss.
(34) An example of this subject of discrimination can be found in the genetic tests that, for ten years, were required of all those African-Americans who wished to enter the US Naval Academy. The aim was to detect sickle-cell anaemia, so that carriers of this disorder, as we have seen, 1 in 12, were excluded from admission. In a subsequent trial, it could not be proved that carriers of this disease had any problem in carrying out their activities in the Academy and internship was declared discriminatory (D. Suzuki; P. Knudtson, Genetics. Conflicts between Engineering Genetics and human values, op. cit, 144; J. Sanmartín, et al. (eds.), programs of study on Society and Technology, "Anthropos", 253-254.
(35) Arntzen, Biotechnology in the service of the developing world, in H.P. Bernhard, C. Cookson (eds.), Genethics, Ciba Communications, 1995, 45. They have been accused of being harmful to health and of having side effects that are currently unknown.
(36) The text provided as follows:
"We, the undersigned members of a commission acting on behalf of and under sponsorship of the Assembly of Life Sciences of the National Research Council of the United States, propose the following recommendations:
First and foremost, until the potential risk of recombinant DNA molecules has been better assessed, or until adequate methods are developed to prevent their dissemination, scientists worldwide should join this committee by voluntarily deferring the following types of experiments...." (mainly concerning the autonomous replication of bacterial plasmids that could introduce genetic determinants for antibiotic resistance, as well as those involving the attachment of DNA from animal viruses, whether or not oncogenic, to DNA elements capable of autonomous replication). Vid. J.R. Lacadena, El project Genoma Humano y sus derivaciones, in J. Gafo, Ética y Biotecnología, Universidad Pontificia Comillas, Madrid, 1993, 108-109.
(37) A summary of the principles guiding the recommendations and conclusions of the lecture of Asilomar can be found in n. López Moratalla (ed.), Deontología Biológica, School de Ciencias de la Universidad de Navarra, Pamplona, 1987, 319-326.
(38) The modified cells live longer in the patient than previously thought (S. Grisolía, project Genoma Humano: concepto y estrategias, in "Revista de Occidente", 1993, 142, 29-30). Very recently, gene therapy has been used to treat, among others, Canavan disease, which fatally affects the brain. The technique involves the implantation of genetically altered material.
(39) Michael Blaese, a pioneer of human gene therapy and member of the National Center for the Human Genome research in the US, published the results of a clinical essay with two children affected by severe immunodeficiency syndrome (SCID) in the journal Science. These children responded to gene therapy. Although the application of the technique was discontinued, the positive effects still continued (see W.F. Anderson, Gene therapy, in "research and Science", 1995, 230, 60 ff.; R.G. Cristal, Transfer genes to humans: early lessons and obstacles to success, "Science", 1995, 270, 404-410; T. Friedmann, Human gene therapy - an early lessons and obstacles to success, "Science", 1995, 270, 404-410; T. Friedmann, Human gene therapy - an immature genie, but certainly out of the bottle, "Nature Medicine", 1996, 2, 144-147; J.M. Leiden, Gene therapy - promise, pitfall and prognosis, "New England Journal Medicine", 1995, 333, 871-872; R.C. Mulligan, The basic science of gene therapy, "Science", 1993, 260, 926-932; X. Estivill, Gene transfer: The genetic scalpel for the treatment of diseases, in "Quark", 1996, 4, 43 ff.)
(40) S. Rodotá, Tecnologie e diritti, Il Molino, Bologna, 1995, 207.
(41) W.F. Anderson, "Human Gene Therapy: Why Set Limits?", "Journal of Medicine and Philosophy", 1989, 14, 681-89 (translated in "Labor Hospitalaria", 1989, 214, 298-302).
(42) For the creation of the hybrid cell, the scientists used cells donated by one of the researchers. Several experts, as well as the association of the American Biotechnology Industry, have called on the US government to impose clear guidelines on these lines of research.
(43) See J. Gafo, 10 palabras core topic en Bioética, ed. Verbo Divino, Estella, 1993, 230.
(44) A. Aparisi, Integrity and individuality Genetics, in op. cit., 96 et seq.
(45) B.M. Knoppers, L'integritá del patrimonio genetico: diritto sogetivo o diritto dell'Umanità, in "Politica del Diritto", 1990, XXI, 2.
(46) See a critique of the current regulation of manipulative conduct Genetics in A. Aparisi, El project Genoma Humano: algunas reflexiones sobre sus relaciones con el Derecho, op. cit., 103-105.
(47) The result of the famous project, carried out by Wilmut, I., Schnieke, A.E., McWhir, J. and Campbell, K.H.S., was published on 27 February 1997 in the journal "Nature" under the title degree scroll Viable offspring derived from fetal and adult mammalian cells (1997, 385, 810-3).
(48) Cloning means the asexual production of genetically identical organisms or cell lines. The process can be carried out in two ways:
1º Embryo splitting (bisection) or separation of blastomeres in the early stages of the embryonic development . The method consists of separating the embryonic cells so that they develop independently of each other to produce cloned embryos. This method is similar to the one that in nature leads to the training of monozygotic twins (On this technique vid. P.R. Gindoff, Clonación por separación embrionaria, En las Fronteras de la Vida: Ciencia y Ética de la Clonación, Fundación de Ciencias de la Salud, Madrid, 1998, 52-61; J.R. Lacadena, La clonación: aspectos científicos y éticos, "Anales de la Real Academia de Farmacia", 1997, 63, 289).
In 1998, an experiment using a similar technique was publicly announced. Two American centres research , the University of Wisconsin - led by Professor James Thomson - and the Johns Hopkins University - with project led by Professor John Geaghart - made public the production of stem cells - or totipotent stem cells - from early embryos of such human embryos. These are undifferentiated cells from which almost all human tissues can be made. The goal is to cultivate such cells and make them capable of giving rise to tissues that can later be used for transplantation and the treatment of diseases. The technique has generated a broad scientific and ethical discussion . From the latter perspective, the problem of the clear instrumentalisation of a human life, that of the embryo, at the service of ends unrelated to its own health or well-being is raised.
2º Transfer or transplantation of nuclei to oocytes or zygotes from which, in turn, the nucleus has been extracted -enucleated-. The transferred nuclei can have several origins:
a. From undifferentiated embryonic cells.
b. From differentiated somatic cells. This technique is the one that led to the creation of Dolly the sheep.
(49) Schettles achieved human cloning by obtaining zygotes that multiplied to produce embryos. The procedure consisted of taking the nucleus of a male cell, removing the nucleus of an egg cell, and inserting the nucleus of the somatic cell into the germ cell. It was found that the manipulated egg behaved just like one fertilised by a spermatozoon (see L. B. Schettles, Diploid nuclear replacement in mature ova with cleavage, in "American Journal of Obstretrics and Gynaecology", 133, 1976, 22).
(50) The fact that a lamb could be derived from the information Genetics of an adult confirmed that cell differentiation did not involve irreversible modification of the genetic material necessary to bring the entire development to full term.
(51) Against this background, it is important to note that animal cloning is not without ethical relevance. In this respect, we can ask ourselves: does any human benefit justify animal cloning, or should we determine the types of goods at stake? On the other hand, does a possible therapeutic or nutritional success justify subjecting animals to techniques and tests that will radically modify them or cause them serious harm? The Italian National Bioethics Commission has stated that the cloning of animals and plants (with the exception of humans) can be accepted if it has a purpose that corresponds to the promotion of human or environmental good, in particular therapeutic, and is not reduced only to commercial profit; if it does not cause unjustified suffering in animals that is not proportionate to the good to be achieved and does not involve an implicit attack on or risk to biodiversity (Comitato Nazionale per la Bioetica, "La clonazione come problema bioetico", Medicina e Morale, 1997, 2, 360-2). This last requirement is interesting to note because the cloning of livestock has often been criticised as a danger, as it is an attack on biodiversity. This assertion is difficult to maintain at present, due to the low efficacy of these techniques. Some authors argue that it may never become a real problem. From their point of view, it is not logical to arrive at a status where all herds are cloned. There would be small herds with genetic differences between them, result if different objectives were to be pursued by such techniques. Nevertheless, the question could be asked for the not so distant future, when the technique is more developed. In my opinion, the cloning and enhancement of the most qualitatively and quantitatively profitable genetic traits may, in the long term deadline, be a serious threat to biodiversity.
(52) The "Bulletin of Medical Ethics" has compiled, in successive issues, the legal status of human cloning in different countries (Vid. "Bulletin of Medical Ethics", 1997, 125, 3-5; 126, 4-8; 127, 7.
(53) On the reasons currently put forward in favour of cloning, see the extensive list compiled by Hans Jonas in Tecnica, medicina ed etica, cit. in A. Fiori; E. Sgreccia, La clonazione", "Medicina e Morale", 1997, (2), 232-3.
(54) H. Allmers, Ethics of cloning, "Lancet", 349, 1997, 1401.
(55) Lucinda Veeck, Director of Embryology at the Jones Institute for Reproductive Medicine in Norfolk, Virginia, points out that the new techniques are very valuable for studying the development early embryos. In her opinion, they can also help to determine the influence of different components of the cytoplasm on embryogenesis (see R. Kolberg, Human embryo cloning reported, Science, 1993, 262, 652-3).
(56) In this sense, it has even been claimed that cloning "will make it possible to preserve and perpetuate the finest genotypes that arise in our species, just as the invention of writing enabled us to preserve the fruits of the human work " (V. Packard, The People Saphers, cit. S. N. Hidalgo, Clonación o reproducción en serie de seres humanos, ¿una alternativa del siglo XXI?, "Revista de Derecho y Genoma Humano", 1996, 4, 46-64).
(57) S. Kenwright, Ethics of cloning, Lancet, 1997, 349, 1401.
(58) However, it should be noted that this argument cannot be maintained even in terms of its usefulness or efficacy. It is true that increasing the number of embryos transferred issue increases the chance of pregnancy, but it is also true that this is only true if the embryos are heterogeneous Genetics (H. W. Jones; R. G. Edwards; G. E. Seidel, On attempts at cloning in the human, "Fertility and Sterility", 1994, 61 (3), 425).
(59) Statements made in 'Le Figaro', 5.VI.1997.
(60) Baker replies to this statement by saying that, in that case, what do we do with the 1% of the population who are monozygotic twins? Are they not essentially human? (M. R. Baker, Cloning humans, "Nature", 1997, 387, 119). To this one could reply that the injury to human dignity, and consequently to individuality Genetics, only occurs when an external will manipulates a human being to achieve ends that are alien to him or her. Nature does not infringe rights, just as the right to life is not infringed when someone dies, but when one person denies another the possibility of life.
(61) See J. Gafo, 10 palabras core topic en Bioética, Verbo divino, Estella, 1993.
(62) See A. Del Amo, Eugenesia, in N. López Moratalla (ed.), Deontología Biológica, School de Ciencias de la Universidad de Navarra, Pamplona, 1987.
(63) See A. Papanikitas, Do androids dream of electric sheep? Scientific, medical and ethical implications of recent advances in animal cloning", "Catholic Medical Quarterly", 1997, 274, 25-6.
(64) M. Cimons, Reactions to cloning, "Nature Medicine", 1997, 3 (4), 370.
(65) Recently, the scientists who created Dolly have admitted that clones suffer from gigantism and that the animals die young. Ian Wilmut has admitted that "all attempts to eliminate this serious problem have failed, which jeopardises the whole project" (Statements published in "ABC", 28-7-1997). As for human cloning, Wilmut's team made it clear to a group of British MPs that the application of the technique to humans, while possible, would be offensive. He specified that if some group were willing to experiment with a thousand human eggs (the same amount was used to clone the sheep), significant progress could be expected in one or two years. Vid. La técnica de la clonación sería aplicable en humanos en dos años, "Cuadernos de Bioética", 1997, 29, 717.
(66) Available in "Medicina e Moral", 1997, 2, 325-7.
(67) It is interesting to note that already Recommendation 1046, adopted in 1986 by the Assembly of the committee of Europe, on the use of embryos and foetuses for diagnostic, therapeutic, scientific, industrial and commercial purposes, recognised, in points 5 and 8, that "life is human from fertilisation". And in point 10 it stated that "the human embryo and foetus must in all circumstances benefit from the respect due to human dignity".
(68) The Catholic Church has also expressed its views on this issue on various occasions. In a grade published in the organ of the Holy See, "L'Osservatore Romano", under the heading degree scroll An imperious demand of reason and humanity, it encouraged States not to make concessions in the face of pressure from pro-possibilist currents, which are prepared to support human experimentation with techniques applied to animal cloning.
(69) Law 35/1988 of 22 November 1988. BOE, 24-XI-1988.
(70) C.M. García Miranda, La regulación jurídica de la clonación de seres humanos, "Cuadernos de Bioética", 1997, 30, 913-8.
(71) G. Herranz, Ética de las intervenciones sobre el embrión preimplantado, in "yearbook Filosófico", XXVIII, 1994, 127-28.