Genetic Engineering

Human Rights UNESCO

In our continuing effort to present a balanced approach to the learning and education on human advancement technology, we re-print this commentary on the UNESCO General Conference's Declaration on the Human Genome and Human Rights originally published by Agenzia Fides


The UNESCO General Conference felt that it was urgent for the international community to provide itself with an international instrument more particularly focused on the human genome. On 11 November 1997, the Universal Declaration on the Human Genome and Human Rights was adopted unanimously and by acclamation. The aim of this Declaration is to guarantee the free pursuit of genetic research and its applications in respecting fundamental rights and freedoms. In this text, which has legal scope, the idea of human genome applies to both the individual genetic heritage -in the twin senses of genetic material (DNA molecules) and genetic information - and the entire genetic heritage of the human race. The use of the word "universal" in the title of the Declaration highlights the exceptional scope of this text. Incidentally, many of the Holy See's high-ranking personalities and institutions participated in the drafting of this Declaration. The Declaration comprises a Preamble and twenty-five Articles. These latter are grouped in logical order, into seven sections, whose title indicates the subject.

The Preamble

The Preamble recalls the aims and the principles of the Declaration which are fully in line with UNESCO's ideals and the ethical mission it has assigned itself in its Constitution. In the field of human genetics, this mission inevitably becomes acute with regard to the risks incurred by humankind : the risk of calling into question the principle of the equal dignity of persons, the risk of an erosion of the material and moral solidarity of societies towards vulnerable persons and the risk of the growth of inequalities in the sharing of benefits resulting from research and its applications.

The Preamble also notes the different international tools adopted by the United Nations in the field of human rights and which provide the basis of the Declaration's principles. Amongst these, special consideration should be given to the International Declaration of Human Rights of 10 December 1948, which enshrined the universal recognition of human rights and is the matrix for international human rights law.

Human dignity and the human genome

By affirming in Article 1 the unity of the human family, the Declaration stresses the intrinsic value that is attached to preserving this unity. This confirmation is based on the recognition of the dignity of all human persons, as well as their diversity. In so doing, this Declaration is totally in line with the Declaration on Race and Racial Prejudice, adopted by UNESCO on 27 November 1978, whose first Article proclaims : "All human persons belong to a single species and are descended from a common stock. They are born equal in dignity and rights and all form an integral part of humanity". Furthermore, Article 1 states that in a symbolic sense, the human genome is the heritage of humanity. The idea here is to underline that research on the human genome and its applications pledge the responsibility of all humanity in the interest of present and future generations. This research can, in fact, concern both individuals and the human family. The responsibility of the international community is a major ethical imperative. It is in this sense that the concept of "heritage of humanity" must be understood. It is necessary to recall that this concept of "heritage of humanity" has already been used in UNESCO's instruments, not only in its Constitution, but also in different international agreements. We can thus give the example of the Declaration of the Principles of International Cultural Cooperation of 4 November 1966, which declares in its first article (3rd paragraph), that : "all cultures form part of the common heritage belonging to all mankind". In this context, this statement had a symbolic value, expressing the awareness of the world community of the need to ensure the protection of the different components of a common cultural heritage .

In Article 2, the Declaration states that everyone has a right to respect for their dignity and human rights regardless of their genetic characteristics. This is a fundamental principle whose corollary is the prohibition of all forms of discrimination based on the genetic characteristics laid down, further on, in Article 6. In referring to the dignity of the human person, the Declaration intends, above all, to condemn any attempt to draw conclusions of a political or social order resulting from a so-called distinction between "good" and "bad" genes.

In this Article, the Declaration also rejects all forms of genetic reductionism. What we know about the human genome, as a fundamental type of knowledge which particularly concerns a human person, is liable to be interpreted in ways which are contrary to the dignity of individuals as free and responsible beings. Some theories are already trying to prove that certain character or behavioural traits could be attributed to genetic factors. In expressly condemning genetic reductionism, the Declaration endeavours to underline the danger of these theories that evidently conceal eugenist designs.

Similarly, in Article 3, the Declaration refuses any genetic determinism, which would give the impression that the individual person is genetically "programmed" from the beginning of his or her life. Such a genetic determinism would ignore the complexity of the interactions between the human genome and its environment in the broad sense of the term. In underlining the influence of living conditions and the natural and social environment on the development of the genetic potentialities of individual persons, depending, for example, on their lifestyles and hygiene, this Article reinforces the assertion that human persons cannot be reduced to their genetic characteristics alone.

Article 4 lays emphasis on the inviolate nature of the human body and particularly on the proscription for human genes and their sequences to be the object of trade. As far as patenting is concerned, this notably excludes the possibility for a gene or a gene sequence to be patented "in its natural state". However, this Article does not preclude the results of genetic research from giving rise to intellectual property rights.

Rights of the persons concerned

The principle of the protection of the individual from the consequences of research on the human genome is based on a series of rights that follow directly from the principles set forth in the Universal Declaration of Human Rights already mentioned :

- the right to equality of treatment, which has as a corollary the rejection of all forms of discrimination ;
- the right to individual freedom, which is based on the requirement of free consent ;
- the right to the protection of private life, which implies protection of the confidential nature of personal data ;
- the principle of solidarity between men and women and between countries, which is the corollary of the right of everyone to live in decent conditions and to benefit from the advantages resulting from scientific progress.

In the different Articles of this section, when the words "research, treatment, diagnosis or medical intervention affecting an individual's genome" are used, this means any manipulation or alteration that could have physical, psychological, economic, social or other repercussions on an individual or a group of individuals.

The various paragraphs of Article 5 are aimed at protecting the rights of the persons concerned and at preventing any practices which might be contrary to human dignity, freedom and human rights. These practices comprise, first of all, those inspired by racial or social prejudice. The Article as a whole sets forth the basic principles that should govern any intervention on the human genome, and in particular, the principle of precaution, a corollary of the right to security and health, as well as the principle of prior, free and informed consent, a result of the right to individual freedom.

The fight against all forms of discrimination, for whatever their motive (see in particular Article 2 of the Universal Declaration on Human Rights) and in whatever field (employment, health, education) is a fundamental component of international human rights law. Many international instruments have enshrined the principle of non-discrimination, a corollary of the principle of equality and respect for dignity. It means prohibiting all forms of discrimination which could be used against an individual or a group - particularly ethnic minorities - presenting certain specific genetic features, in the exercise of such rights as access to employment or social protection. With a view to allowing the possibility of "affirmative" discrimination, the Declaration states that the types of discrimination that are prohibited are those which infringe human rights, fundamental freedoms and human dignity. Specific genetic characteristics can therefore justify a different treatment, if need be, as long as this corresponds to the general interest and respects the principle of proportionality.

Article 7 guarantees the protection of the confidential nature of genetic data associated with an identifiable person. Thus, the Declaration follows the general principle of the respect for privacy. This protection would appear essential, in view of the specific risks involved in access to this information. Genetic information is of an entirely new type, since it provides information not only on individuals, but also on their relatives and descendants. The scientific uncertainty currently surrounding the nature and importance of the role of genes outside the field of the individual's health, also contributes to reinforcing the need for the protection of this information, which could be used abusively. Access to this information must therefore be controlled with regard to third parties, who could make decisions that could cause prejudice to the individual concerned. This protection would seem to be necessary, especially with regard to insurance companies and employers.

In order to strengthen the protection of the individual in the case of an intervention on his or her genome, Article 8 establishes a right to compensation for any damage sustained. Indeed, there is a growing tendency for the law to give increasingly broad recognition to the right to compensation in the case of individuals who have incurred undue damage as a result of a medical intervention, by going so far as to admit the responsibility for risk (and not just for fault). This Article endorses this right to reparation, in line with international and domestic law.

Research on the human genome

In Articles 10, 11 and 12, the Declaration confirms the primacy of the human person over biological, genetic and medical research. It is inadmissible for such research and its resulting applications to pursue goals which are contrary to the human rights, fundamental freedoms and the dignity of individuals or groups of individuals, particularly ethnic minorities, or for the manner in which they are conducted to be at variance with human rights, fundamental freedoms and human dignity. The technologies resulting from genetic engineering and biology could lead to practices which would be contrary to human dignity. Such practices shall not be permitted. This section gives the example of cloning which would intentionally be used for the serial replication of human persons. But it could also be a question of other technologies already practised, such as the selection of embryos based on sex or, in a more distant future, the creation, by transgenic technology, of such wild figments of the imagination as men-animals or animals-plants. This section also confirms the freedom of research.

Conditions for the exercise of scientific activity

The UNESCO Recommendation on the Status of Scientific Researchers affirms the "moral, human and ecological" responsibility of researchers. Article 13 lays stress on the responsibility of researchers, which is the counterpart of the freedom of research set out in the preceding Article. The Declaration reiterates the importance of the social and ethical implications of research on the human genome, which confers the need for special awareness, on the part of researchers, of their duties and for the respect of a strict professional code of ethics (which underlines the importance of formal research protocols). It also lays stress on the particular responsibilities of public and private science policy makers in this field.

Articles 14 and 15 are the corollaries of the preceding Article. They lay emphasis on the measures that States should take to foster intellectual and material conditions favourable to genetic research. Furthermore, Article 15 stipulates that States should seek to prevent research results from being used for non-peaceful purposes.

In Article 16, States are invited to promote the establishment of multidisciplinary ethics committees, in order to identify the implications of advances in the life sciences on society and the resulting ethical, legal and social issues, inform the public authorities by providing them with detailed advice, particularly to prevent abuse (cf. Article 19, paragraph (i)) and foster the provision of training and information for the public. The Declaration states that these Committees should meet three conditions. They must be independent of the political, economic, scientific, and, in particular, medical, authorities. They must be multidisciplinary in their composition, so as to apprehend the diversity of the issues involved at scientific, philosophical, legal, economic and social level. Finally, they must be pluralistic, so as to allow expression of the main ethical and cultural sensibilities. It is a matter for States to determine the precise status of these Committees and the most appropriate level, whether local, national or regional, for their establishment.

Solidarity and international cooperation

In the fifth section, the Declaration lays stress on solidarity and international cooperation. In the social field, advances in genetics should not lead to a calling into question of aid systems for families and population groups who are particularly vulnerable to or affected by disease or disabilities of a genetic nature. Given this danger, the Declaration stipulates that it is the State's responsibility to respect and promote the practice of solidarity towards the above-mentioned categories of persons. With regard to questions concerning privacy first of all, the person's right to freely decide for himself cannot be called into question, especially by the cancellation of medical or social aids or benefits. This Article also aims at preventing any risk of stigmatisation of persons with a genetic disease or disability. In the context of this solidarity, States should also foster research on the identification, prevention and treatment of genetically-based and genetically-influenced diseases, in particular rare and endemic diseases.

Promotion of the principles set forth in the Declaration and Implementation of the Declaration

Fully in keeping with UNESCO's mission, these two sections are particularly aimed at promoting multidisciplinary forms of education in bioethics and in bioethics-related research. In addition to the specialists concerned (especially doctors, researchers, health professionals, those responsible for scientific policies, jurists, etc.), this education should be aimed at all members of society with the purpose of making bioethics an intrinsic component of the general culture of tomorrow. It should include the necessary scientific and technical foundations for enabling the basic issues to be raised and for the promotion of an ethics of freedom and responsibility. As bioethics education is a school for teaching the spirit of openness and respect for others that UNESCO should foster, it should reflect the different trends of world thought and cultures. To implement the principles set out, in addition to possible action at normative level, Article 23 highlights the importance of undertaking appropriate action through education, training and information. It particularly underlines the need to encourage exchanges and networking between independent ethic committees.

In addition to the researchers and practitioners concerned, research on the human genome has implications that concern the whole of society. It is therefore necessary to encourage a wide-ranging international debate, in order to help society make decisions on the choices that are called for. In addition to education in bioethics, States should take appropriate measures to support all other forms of research, training and dissemination of information. The free expression of the different socio-cultural, religious and philosophical trends of thought would also be necessary.


The progress of medicine has also had spectacular repercussions on human longevity, particularly in developed countries, above all in the more affluent classes. Lifelong health care, not only for the 3rd and 4th ages, combined with our knowledge in the fields of hygiene, nutrition and prevention, have considerably improved the quality of life. Indeed, in developed countries, average life expectancy, which is over 70 years of age for men and over 80 for women, is increasing by a year every four years. On the contrary, in the impoverished areas of these countries, average life expectancy is in the region of 45 years of age, that is, it is comparable to that of one of the world's least advanced countries. Incidentally, the difficulties of access to health care in developing countries and, in general, by deprived populations, are aggravated by the insalubrious conditions (water, housing, etc.), malnutrition and famine, etc. in which they live. What is more, new diseases are appearing today and contagious diseases - such as tuberculosis - which had regressed, are affecting broader sections of the populations even in industrialised countries, given the growth of poverty, precariousness and social exclusion.

However, human longevity does not preclude the interminable suffering in the case of incurable diseases and relatively new situations, namely persons in a chronic vegetative state, or those who are kept alive by survival treatments (respiratory or feeding appliances, etc.). In a certain number of countries, ethics committees have spoken out against prolonging life by artificial medical means. As a whole, they consider that relentless action to keep people in the terminal phase of a disease alive, when no improvement of their state or remission of the disease can be expected, is contrary to human dignity. Considerations of medical or technological performance should not take priority over the necessary respect of human dignity. But, over and above the prolongation of life by medical means - whose definition and limitations are far from being simple - the ethical dilemmas that are posed to medical teams in these cases can be extremely acute and give rise to many abuses.

At present, a distinction is generally established between active euthanasia, which involves the direct intervention of a medical team, and passive euthanasia, which presupposes an interruption of survival treatments. In some countries, even if passive euthanasia is not explicitly recognised by the law, it is, at least, implicitly accepted by society. As far as active euthanasia is concerned, even if it is more currently practised than society claims to know, few States have, for the time being, decriminalised it. For example, the Netherlands, but also Oregon, have decided to decriminalise active euthanasia under certain conditions, which require a specific procedure. In a number of other countries, such as Norway, the Attorney General or his equivalent has the possibility of not undertaking legal proceedings and of closing the file as long as he has documents showing that the patient requested a doctor to put an end to his life.

However, the question of active euthanasia is being examined in several countries. It is thus on the agenda of the Parliaments of Belgium and Luxembourg. Mention should also be made of the recent judgement of the European Court of Human Rights in the Pretty versus the United Kingdom Affair, which considered that the right to life - protected by the European Convention for the Protection of Human Rights and Basic Freedoms - did not include the right to death . It is also necessary to recall that the cases in which Courts of Justice, particularly in the United States of America, recognised the licit nature of "aid for suicide", this recognition was established on the basis of the right to privacy and not on the right to death.

Is it ethically justifiable to establish a distinction between active euthanasia and passive euthanasia, with a view to the acceptance of this latter ? Is it desirable, as is already the case in certain States, to authorise a person to write a "life will" - sometimes also called "biological will" - requesting not to be subjected to survival treatments ? If such documents were to be recognised, would it be possible to leave it up to the family to decide, in the event that such documents did not exist ? How is it possible to guarantee that such practices will not be dictated by economic considerations, given the cost of intensive health services or palliative care ? What safeguards can society provide itself with to prevent such practices from - gradually, and at the cost of unacceptable flaws - going further than terminally-ill patients and being applied to other categories of persons ?

It is necessary to recall that the European Court of Human Rights (Strasbourg) has just given a verdict in the Pretty versus the United Kingdom case, declaring that the right to life does not include the right to death. This is not the place to comment on the verdict in question, but it will be essential to analyse it attentively, as it contains extremely interesting observations on the right to death.


Today, in many countries, the teaching of bioethics is progressively increasing in universities, particularly in Faculties of Medicine, Pharmacy and Law. Only three countries, namely Canada, Italy and New Zealand, have taken measures to ensure that this education begins at secondary-school level.

The objective of education and training in bioethics, and more broadly ethics, would be to instil a new humanism, by giving young people a new vision of human development. This education and training would enable the young generations to have access to the knowledge of resources that could transform the world through science and technology. Furthermore, it is evident that even if the school has accepted many challenges, it still remains that it is finding it difficult to satisfy the educational objectives that it has assigned itself, as well as the needs of young people.

Young people are often confused by the distortion they observe between the principles conveyed by teaching and their own experience. The need is felt to develop critical reflection amongst young people that will be able to make them acquire the intellectual ability to discern the quality and the validity of different types of reasoning and value judgements.

The introduction of ethics education in school curricula could provide the opportunity for offering them the means of answering the essential questions of today's world. The existence of experiences in the introduction of ethics into school education raises the question of the utility of envisaging a revision of teaching programmes around the concept of ethics.

Ethics could bring about this transformation of education that the different practitioners are ardently calling for, through the reinforcement of values and greater cross-disciplinarity. Over and above the passing on of knowledge, the school should, in fact, carry out a broader mission, namely to educate and pass on values.

If, in the past, philosophy or the theory of knowledge could lead each and every one to make a personal synthesis of acquired knowledge - to go further in the knowledge of oneself and of the world and, consequently, to make a choice of life and action - today, ethics as such is not a knowledge that has been developed, but reflection in action. It is not taught as an academic subject, but is experimented and put into practice. The need to teach bioethics is starting to be unanimously accepted, but the consensus disappears as soon as it is a question of defining the objectives and the methods of this teaching. Furthermore, the problems of bioethics vary from one country to another, depending on the level of the life sciences.

At present, there is some anxiety about the questions that are raised at school, given the complexity of knowledge that must be urgently decoded. The learning of the values of public-spiritedness and citizenship, from kindergarten to university, is recognised as fundamental. The school's duty is to provide all pupils with a stock of cultural and moral knowledge which will make them active citizens. It is in this way that ethics, particularly with regard to the sciences and their applications, could be a strand that will enable them to coherently present young people with questions which are posed every day, not only concerning health, but also life and death.

The introduction of bioethics or ethics education, depending on the terminology which remains to be defined, will make it possible to help young people not to remain prisoners of individual emotions which are not subjected to critical examination. With regard to content, it is necessary, through either bioethics or ethics education, to avoid disseminating an academic kind of ethics, as the recognised challenge is that of the rediscovery of a jointly accepted structured ethics, namely, a primordial knowledge forming the constituent base of every representation examined, both of oneself and of the world.

In this regard, it is necessary to envisage bioethics or ethics education in a transverse and multi-disciplinary framework, all the more so as it concerns complex systems and should consequently overcome the compartmentalisation of the different subjects. What is at stake is a humanistic vision of science and technology; it is a living practice of democracy and solidarity, as the idea of human person is at the core of the debate. In accepting this, ethics education could be one of the avenues for the follow-up of the Report established by the International Commission on Education for the 21st Century, chaired by Mr. Jacques Delors, so strongly desired by the Director General.

But this education is posed in terms of training capacities, particularly the training of trainers, so as to ensure the multiplying effect that is desirable. A favourable attitude on the part of the adult world, and more particularly the teaching body, is an essential prerequisite. This is why it is indispensable to encourage teachers and head-teachers to introduce innovative experiences in both the contents of their teaching and the methods used.

As for the choice of the teaching level to introduce ethics, secondary school would seem to be reasonable, given the maturity already acquired by the pupils and the subjects they are taught with a view to their choice of career. Furthermore, the great variety of courses offered by secondary education in many countries makes us think that it would be possible to include ethics in the curricula of both general education and specialised classes in sixth-form colleges and lower secondary schools, or again in technical and vocational education establishments. However, the success of such innovations depends to a large extent on the consistent nature of the educational system and the establishment of links between the levels, particularly between primary and secondary schools, from kindergarten to the last year of secondary school.

Ethics education must be introduced into the existing disciplinary fields without it being necessary to make it a specific subject. But, taken in a broad sense, in addition to the ethical problems posed by the progress of the life sciences and their applications to man, it must be extended to the whole of nature and not only seen from the sole anthropomorphic angle.

In terms of content, as an illustration, the following themes could be chosen as a framework of reference for ethics education :

a) the respect of the human body (experimentation on human subjects, organ and tissue donations and transplants) ;

b) the beginning and the end of life (research in embryology, medical assistance for procreation, palliative care and being there for the dying person) ;

c) the brain and neuroscience ;

d) genetics and its applications (human genetics, animal and plant biotechnology) ;

e) the environment and sustainable development (water, natural resources, climate) ;

f) outer atmospheric space ;

g) information and communication technologies.

Many methods could be envisaged, but with a common point : to bear in mind that the pitfalls of an academic kind of ethics must be avoided. The pupil must only be informed of the data of the problem, solutions and possible aberrations. It is, in fact, essential to avoid misunderstandings, forge the critical spirit and bring about an opening up of the mind. The challenges of bioethics transcend the sole sector of individual or collective behaviour with regard to illness or health : it is an outstanding potential field for the development of democracy and a testing ground for new forms of organisation of collective life, respectful of the diversity of cultural sensibilities and fully aware of the importance of the full exercise of individual and public freedoms.

With regard to the teaching methods to be used, it would be doubtless be necessary to leave a great deal of latitude to the different practitioners, given that these methods should be the teachers' responsibility. Bioethics education finds its place in a context of socio-educational activities, but must nevertheless remain an educational and scientific act.


The progress of the life and health sciences lead to applications which affect all the aspects of people's lives :

- privacy (responsible personal decisions, confidentiality of individual, medical and genetic data);

- family life (the couple's projects, choice of reproduction, relations with the other members of the family);

- public life, with all the advantages that this procures, but also with the obligations that this involves, especially the duty of solidarity towards the most vulnerable persons;

- economic and social life, with regard, on the one hand, to the protection of health and access to health care and, on the other, the applications of biotechnology to agriculture and the environment.

The Universal Declaration on the Human Genome and Human Rights begins by stipulating the fundamental unity of all members of the human family, regardless of their genetic diversity. Individuals can never be reduced to their genetic characteristics. Given their freedom of judgement and choice, human beings transcend their genetic conditioning. This means that science is not the judge of what constitutes human value or a worthy human life.

It is vital to underline this basic principle which cannot be reconciled with cloning for the purposes of the reproduction of human persons, a technique which denies the uniqueness to which our very birth gives us the right. This uniqueness is at the core of our identity; it is the nucleus of our existence. Its value is absolute and this cannot be denied.

Under our eyes, science and technology is in the process of transforming not only all the aspects of economic and social life, but also cultural and private life. They greatly modify relationships between individuals and nature, individuals and society, cultural representations and the relations between individuals, in short, between the person and the world.

Through its knowledge and techniques, humanity should accompany all the transformations that are taking place in the social fabric by an ethical reflection, rather than being the passive witness of its history. Relations between science and the future of mankind are closely linked and it is on these that will, for a large part, depend world balances and the prevention of possible serious conflicts.

In this XXIst century, it is necessary to have an education project commensurate with the challenges facing us. This education should necessarily be based on two major concepts : responsibility and solidarity.

Original Article


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