Global Bioethics: Right to non-Discrimination, Right to Human Genome and Rights of Future Generations

1. Introduction

Considerations on ethical legitimacy of medical practices arose after the Second World War and the Nuremberg trials as a reaction to the Nazis medical procedures used in concentration camps and in response to the extreme implementation of eugenics programs.1 Nonetheless, it was in the sixties and seventies that the need for bioethics was felt. The many advances in the medical field that occurred after the war led Daniel Callahan to affirm, that it was ‘an era that came to see the enormous possibilities the life sciences offer to combat disease, illness, and death — and no less to see science’s possibilities for changing the way human beings could live their lives.’2 The exciting possibilities arose from those years, gave rise to many expectations as well as many preoccupations. Those decades also saw a strong social fight for human rights and non-discrimination, which fostered the process of individualization of rights. Carlo Casonato explains that it also implies a ‘right of choice upon oneself life, and on oneself body and health.’3 In the early seventies the concept of bioethics was formulated for the first time by Van Rensselaer Potter.4 Bioethics was born as a response to the increasing distance between sciences of life (bio) and ethics, it was meant to bridge the gap between them. Its original scope is to bring ethical reflection in the scientific field.

The fields of knowledge reassumed in the terms, which form bio-ethics are per se very broad. They cover different expansive areas of theoretical research and practical application. On the one hand biology and life sciences, for instance, do not study only human life but life in its broadest sense. Its objects are also animals, vegetation and the earth as a whole living system. In this work I will concentrate on the restricted domain related to human life. On the other hand, ethics is an even wider discipline which varies greatly in relation to human values. Values are personal in nature because they are borne by the individual, but their creation, evolution and diffusion has a collective identity.5 Cultures, traditions, religions and philosophies, hold and perpetrate values in different ways. To resume, bioethics is a combination of two huge domains of knowledge and practice (sciences of life and applied philosophy of human values).

Kaja Finkler states that, ‘with the ongoing globalization process, the widespread use of advanced medical technologies imposes similar ethical quandaries external to a specific society’s daily realities.’6 Therefore in this text I argue around global bioethics. It relates to global challenges and aims to respect the inborn value of each person. Due to the innate dignity of every human being, the principle of non-discrimination is fundamental in the approach of this analysis. This scenario seems to be hampered by the wide diversity of cultures, religious and political belonging. With reference to the well known dispute between the cultural relativist and universalist, global bioethics claims a global justice which is able to respect diversity. This is possible because, as shown by Ann-Belinda Preis7 and Ali Khan,8 cultures are dynamic rather than static entities. So, the aim of global bioethics will be to define standard ethical instruments for the respect of the common challenges brought in by science and globalization. The main issue for global bioethics is to respect human dignity and non-discrimination. As we will see, this implies that the rights of future generations are also a fundamental issue.

To respect diversity and protect the dignity, global bioethics cannot use a top-down approach. Jenny Reardon underlines that in bioethics there can be no cultural impositions but a space for the plurality of approaches must be kept open. A moral regime to address complex bioethical issues cannot be created ‘drawing upon existing Western biomedical ethical tools such as informed consent … developed in Western contexts where the subject of rights and the locus of autonomy are assumed to be the individual. Thus this ethical construct does not provide tools or concepts for thinking about collective rights.’9 Bioethics must not be used to impose moral standards. When it is applied in a specific socio-political context, it must tally with the peculiar cultural, traditional, religious and philosophical background.

The philosophical method of this work does not aim to answer specific questions instead it speculates on the issues. In fact, as affirmed by Fernando Savater, ‘Philosophy is not a questioning which will be clarified by succeeding attempts until an answer is found in the end of the work. It is an essential conclusion from which one starts, developing its several implications and the problems became more and more complex until when the conclusion itself, though remaining as such, goes over in the final and definitive question.’10

2. The Context of Global Bioethics

The first aspect to underline is that even in the restricted domain related to human life, bioethics is not exactly the same as medical ethics. A definition of medical ethics is provided by Baruch Brody et al. : ‘Medical ethics can be defined as the disciplined reflection on and critical inquiry into the moral dimensions of medical practice. The moral dimensions of medical practice concern mainly the obligations of physicians to patients in clinical care and research, as well as the obligations of physicians to the community, to health care organizations, and to society in general.’11 The implications of sciences in human life are not simply related to health concerns but they extend to philosophical and moral questions, which pretend to be answered in a wider perspective than in the peculiar field of medicine. Medical ethics deals with the obligations of the physician to others; the patient, institutions and the community. Whilst bioethics comprises concerns for human health as well as human morals, and extends to non-human life.

In the western societies, medical ethics can be dated from ‘Hippocratic oath’in the fourth century before Christ. This is still considered a fundamental document for every physician but in practice it is not completely respected. Michael Grodin explains why, ‘ [t]he document has injunctions against abortion, euthanasia, and surgery, as well as strict provisions regarding sexual conduct and confidentiality. Further, the Hippocratic Oath reflects the male-dominated nature of ancient medicine’.12 The four widely recognized principles which regulate modern medical ethics are non-maleficence, autonomy, beneficence and justice.13 The scope of medicine itself is provided by Tristam Engelhardt, ‘ [m]edicine is the application of scientific generalizations with the object of restoring or preserving certain human abilities, securing freedom from pain, maintaining or restoring bodily form, and postponing an unacceptable death’14 As affirmed by Brody et al., ‘ [i]n the past three decades medical ethics has been subsumed in the field of bioethics.’15

Foreseeable catastrophic consequences of human life dynamics (progress in science and technology together with economic interest) reached in the ‘age of risk’, raise questions which are central for global bioethics. Science and technique provide the humanity with innovative instruments to act on life and life dynamics. Hans Jonas remarks that in the previous ages ‘techne was a measured tribute to necessity, not the road to mankind’s chosen goal — a means with a finite measure of adequacy to well-defined proximate ends.’16 In the present age, techne is no longer a simple tool to solve problems risen by necessity. It is the aspiration to change the way humanity will ride the continuously new expectations of maintaining and reshaping life. Nonetheless Ulrich Beck reminds that, ‘ [a]long with the growing capacity of technical options [Zweckrationalität] grows the incalculability of their consequences. ‘17 The greed of new targets and new results, the expectations of new horizons, seems to be of priority in the post-modern society. The continuous progress of humanity is the central preoccupation of science. Is there a conceivable ethical limit to scientific rationality?

The developments in the field of biotechnologies and biomedicine lead Evan Willis to affirm that, ‘ [g]eneticisation is a new element of the risk society’.18 This progress in genetics gave a more urgent status to claims risen by sciences of life. Finkler affirms that, ‘ [w]ith the advent of modern technology, its use has become not only a health management strategy but it also has led to ethical dilemmas because, according to many physicians, in cases of life threatening conditions, a disparity was created between those who could afford its use’.19 This shows that the domain of global bioethics also concerns the availability of those progresses for the world population. The scenario proposed by David Le Breton is terrific and unfortunately, not so unrealistic, ‘ [w]hilst some will construct the genetic make-up of their children, others, far away or perhaps in the next street, will try to prevent a newborn child from dying of diarrhoea.’20 Some questions are urgent: To what extent can bioethics allow science to realize its aspiration? Where is the limit? To what extent is the effectiveness of science felt by the humanity without discrimination? Do genetics represent real progress or a new factor of discrimination? Finkler argues that the big disparities in the world urge for ‘a global bioethics that provides a universal guide for the allocation of resources for a population’s medical needs.’21

I think of global bioethics as a discipline that can and should give answers to those and other questions. The pure scientific rationality meets the wisdom of responsibility. The aspirations for the creation of an always beyond, is limited by fundamental minimal rules that can not be underestimated. Indifferently from religious and cultural approaches, all the possible rules are based on human dignity. Therefore human dignity is the cornerstone of global bioethics.

Why do we need global bioethics? This tricky question has its instantaneous response in human dignity. Since human beings are equal bearers of the same dignity they can not be dealt with by different bioethics, at least not if they miss to entail and respect their essential value. Therefore global bioethics has the central objective of instituting the concept of human dignity as a regulatory concept for human acting in the age of risk.

The social perceptions of these discourses is a very delicate issue. Bryan Wynne warns on the monopolisation of scientific knowledge and underlines that ‘an imagined form of public health which reflects commercial definitions of “viable public health-interventions” — that is marketable therapies [sic!], but not for example environmental or nutritional policies — is mutually produced with a dominant epistemic culture within the biological science’.22 In response, Willis invokes a socio cultural dialogue around genetics to understand what extent genetics should reach.23 Raphaël and Catherine Larrère24 undertake a critique similar to the one of Wynne and raise interesting speculations on the excessive exploitation of nature by the scientific anthropocentrism. This makes nature just a set of resources and commercializes them, while the Larrères’advocate an ‘ecocentric ethics’. They also critique the heritage approach, which makes earth and its resources an entitlement of people who will inherit it.25 They support an ecocentric bioethics where nature and human beings are respected as ends, not as a means. A value in itself is the life of all human beings together; humanity.

3. Human Dignity

Human dignity directs the attention to the value of every individual. Michael Elliott remarks that, ‘while the articulation of human rights ideology has now become a worldwide, cross-cultural enterprise, certain cultural assumptions have been taken for granted as fundamental components of global discourse and practice, particularly those revolving around the ultimate inviolability of the individual.’26 The respect for human dignity has produced the individualization of rights and has created a new scale value dimension. Gilbert Hottois underlines that ‘ [i]n postmodern society, the personal autonomy remains crucial, since it is the only source of moral authority and legitimation after the decline of great narrations and myths of collective legitimation.’27 The same author warns about the risk of this personal autonomy, which can be used for purposes contrary to human dignity.

Respect for human dignity can be obstructed by individual libertinage. This happens, for instance, when for pure research purposes the medical doctor puts a patient’s life or health at risk. Helena Melo affirms that ‘dignity is offended when the reciprocity of recognition is denied’,28 and this is exactly what happens when a physician ‘uses’the patient as an object. Understanding the individual freedom in the larger context of social cooperation, researches are justified when the scope that they aim at obtaining is not offending the human dignity of the subjects involved. In the words of Kantian categorical imperative: ‘Act in such a way that you treat humanity, whether in your own person or in the person of any other, always at the same time as an end and never merely as a means to an end.’29 The human dignity of the patient does not decrease upon consent in the paradoxical case where a person, for whatever reason (money, mental instability, suicidal attitude, misunderstanding of medical and technical concerns, intellectual or ethical aspirations), allows to be used as a guinea-pig for researches which offend his/her dignity.

With regard to human genome, Melo underlines that with the Universal Declaration on the Human Genome and Human Rights30 the definition of human dignity was enriched by a new criterion: ‘ [T]he genetic characteristics of every single individual.’31 The main consequences of this are to respect human dignity, no germ-line modification shall be allowed because they artificially and permanently modify the human genome of future persons,32 and no genetic discrimination shall be implied to distinguish among individuals.33 Consequences of the second aspect are that genetic data shall be carefully protected from abusive access or disclosure. Genetic characteristics are sensible information, which must not undermine the dignity of the person to whom they belong to. The uniqueness and diversity of each single individual shall be protected against misinterpretation and mistreatment.

Human dignity is the core concept on which human rights are based. The main international documents and instruments related to human rights and to bioethics directly refer to human dignity. I will now briefly make on overview of them.

At the United Nations (UN) level, the Universal Declaration of Human Rights (UDHR) ,34 in the preamble states, ‘ [w]hereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world, ‘while article 1 affirms, ‘ [a]ll human beings are born free and equal in dignity and rights’.35 The two International Covenants of 1996 also refer to human dignity three times, the International Covenant on Civil and Political Rights36 in the preamble (twice) and in article 10; the International Covenant on Economic Social and Cultural Rights37 in the preamble (twice) and in article 13 (1). They both use the expressions, ‘recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom; justice and peace in the world’and ‘these rights derive from the inherent dignity of the human person’.38

Over the years a primary role for the standard setting in the field of bioethics has been played by the United Nations Educational, Scientific and Cultural Organization (UNESCO). Its declarations have an international relevance as well as hard law rules. They can be seen as a customary bioethical law in this early stage of international legislation on the matter. This is confirmed by Herman Nys, ‘ [a]lthough none of the three UNESCO Declarations on bioethics are binding documents in the legal sense as they are not subject to ratification by the Member States, they nevertheless call on the States to take all appropriate measures, whether of a legislative, administrative or other character, to give effect to the principles set out in the Declarations in accordance with international human rights law.’39

On 11 November 1997, the General Conference of UNESCO adopted the Universal Declaration on the Human Genome and Human Rights.40 This declaration was also endorsed by the UN General Assembly on 9 December 1998. .41 In its preamble there are three references to human dignity, while article 1 states, ‘ [t]he human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity’and article 2 (a) affirms, ‘ [e]veryone has a right to respect for their dignity and for their rights regardless of their genetic characteristics.’42

On 16 October 2003, the General Conference of UNESCO adopted the International Declaration on Human Genetic Data.43 In its preamble it is confirmed that, ‘the collection, processing, use and storage of human genetic data have potential risks for the exercise and observance of human rights and fundamental freedoms and respect for human dignity’. In the first article, one of the aims of the declaration is ‘to ensure the respect of human dignity and protection of human rights and fundamental freedoms in the collection, processing, use and storage of human genetic data, human proteomic data and of the biological samples from which they are derived’.44

On 19 October 2005, the General Conference of UNESCO adopted the Universal Declaration on Bioethics and Human Rights45 in which preamble is affirmed, ‘ [r]ecognizing that ethical issues raised by the rapid advances in science and their technological applications should be examined with due respect to the dignity of the human person and universal respect for, and observance of, human rights and fundamental freedoms, ‘and article 2 (c) affirms that one of the aims of the declaration is, ‘to promote respect for human dignity and protect human rights’. Article 3 (1) reasserts, ‘ [h]uman dignity, human rights and fundamental freedoms are to be fully respected.’46

The dignity that is recognized to individuals borne in all future persons. The respect for their genetic constitution is fundamental. To recognize that the dignity is innate in an individual means also to reaffirm his/her inviolable nature. That nature is also constituted by his/her unique, natural, genetic constitution.

4. Non-Discrimination

Global justice and non-discrimination are strictly connected. Of course, in the international instruments, the principle of non-discrimination is clearly stated.47 The old form of discrimination based on race, sex, colour, religion and political ideas are enriched by a new element, genetic constitution. Willis affirms, ‘[p]eople who have any sort of genetic abnormality may come to be treated as disabled or chronically ill by institutions in society, denied access to jobs, insurance or other social entitlement as a result to be discriminated against on genetic grounds with resultant stigmatisation.’48 For this and other reasons, genetic information has to be protected and used in a very conscientious way. Article 3 of the International Declaration on Human Genetic Data says, ‘[e]ach individual has a characteristic genetic make-up. Nevertheless, a person’s identity should not be reduced to genetic characteristics, since it involves complex educational, environmental and personal factors and emotional, social, spiritual and cultural bonds with others and implies a dimension of freedom.’49 As a human being is not only his/her race, sex, skin colour, religious or political belief, he/she is also not only his/her individual human genome.

Genetic discrimination can be used against the existence of someone. This is what can happen with pre-natal screening with the scope of embryo selection and not exclusively for the control of ‘good’physical-mental conditions of the foetus. Rui Nunes offers a fruitful reflection on ‘dysgenics’50 as a ‘culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the majority of the social matrix; in short as a handicap.’51 This is a form of genetic discrimination. The aim is to not improve the genetic conditions of the children but to have him/her with a specific genetic characterization, which reflects the cultural and ethical ambitions of the parents. Nunes takes the example of deafness and affirms that for deaf parents to have deaf children can be desirable because ‘[t]he Deaf-World is a community that shares common ideals about the meaning of good life’,52 while ‘[f]rom the medical point of view adult and childhood deafness is always a disease and should be treated accordingly.’53

The discrimination of a genetically hearing foetus (discriminated because of this characteristic), appears as a mistake to a person who does not belong to a deaf community. Moreover, this practice is what Nunes defines a ‘use of reproductive technologies in ways that are contrary to the fulfilment of the basic human right to an open future’,54 and therefore unethical. Joel Feinberg speaks about ‘rights-in-trust’to define the ‘right to an open future’, a right that in such a case is violated. This right falls under the responsibility of the persons exercising the parental authority who have to preserve the freedom of choice of the child. ‘The violating conduct guarantees now that when the child is an autonomous adult, certain key options will already be closed to him. … His right while he is still a child is to have these future options kept open until he is a fully formed self-determining adult capable of deciding among them.’55

Another field of application of non-discrimination in a global bioethical domain concerns the fight against easily preventable or treatable diseases, which are harming millions of people, mainly in economically developing countries. One of the tasks of global bioethics is to face the challenges caused by the disparity of health systems and sanitation infrastructures. The inalienable right to health must be protected without discriminations of any sort, while too often the market economy makes this right an hypocrisy. The cause of sufferance and death of millions of people could be faced with a proportionate budget.56 The safeguard of human dignity and justice among human beings, should have at least the same, if not greater, consideration than the aspiration for a good life (of people wealthy enough to think about it) and scientific research.

Research and its applications are useless if they do not affect more than a small part of the human beings from which humanity is composed. Willis affirms that ‘individual genetic therapies will probably never be affordable by the majority of the world’s population.’57 Bioethics must play its role in giving the moral basis upon which a mechanism to address the disrespect of the right to health of a big part of the world population. A desire to use genetic therapies would be only a second step if it will potentially be applicable everywhere and for everyone. Thomas Pogge advocates, a cosmopolitan, global justice. He affirms that what is true for the national context should be true also for the global.58 Wilfried Hinsch describes it as a global distributive justice, which ‘apply irrespective of national borders directly and primarily to the global community of world citizens at large, the aim being that each citizen receives his or her due share of global wealth as determined by a global conception of justice.’59

Global justice is itself a path to the realisation of global bioethics and to the realisation of the right to non-discrimination, in what concerns the realisation of the right to health of every human being.

The resources for the prevention of health problems shall be taught and put into practice now to guarantee their action in the future. Just as an example, the politic and economic conditions, which obstruct the proliferation of vaccines for the care of the more basic diseases are both a violation of the right to the health of those who do not receive that treatment now and also of those who will have birth in a society where the social infrastructures would not be able to guarantee them with the basic preventing health care resources. For the same causes the proliferation of malnutrition and infectious diseases, is a bioethical problem which concerns around eight hundred and fifty million people60 that in the present time are starving of hunger, but it also concerns those millions of people who will have to face this situation (without any fault) in the future, because of causes rooted in today’s decisions. The economical, social and political decisions of today are of a bioethical domain because they harm and jeopardize the basis of the right to health of present and future generations. Is malnutrition not a bioethical problem? Should the sufferance and deaths of millions of people, who are ailed with preventable diseases or bad sanitation, not be seen as a bioethical problem?

5. Eugenics and Genetic Extremism

In the XIX century, the speculations of Herbert Spencer based on the studies of Charles Darwin on evolution, gave rise to ‘social Darwinism’. This is a theory which applies Darwin’s naturalistic speculations to human society. One of the main outcomes of this theory is that hereditary genetic characters are considered predominant over education. But it also gave further justification to discrimination, this time with biological support. Colonialism and wars were given a further motivation as natural processes in social selection. With his work An Essay on the Principle of Population,61 in the end of the XVIII century, Thomas Malthus had already speculated on demographic control. His economic theory, that became famous as Malthusianism, blames that the uncontrolled demographic growth led to the growth of poverty and to the deterioration of the ecosystem. Malthusianism advocates a birth’s control to align the growth of the population with the growth of the available resources.

More or less at the same time of social Darwinism, Darwin’s cousin Francis Galton gave birth to eugenics as a theory aimed at improving human civilization favouring the reproduction of persons with better physical and mental characteristics. Galton advocated the intervention of the institutions to achieve such an evolution. The positivistic atmosphere of the time, particularly in England and Germany, saw a consistent success of this theory. Eugenics action were undertaken in many countries (among them: Denmark, Finland, Sweden, Norway, Iceland, Canada and the USA)^[62] since the end of the XIX century until the seventies of the XX century. The eugenics wave was weakened by the mentioned events that occurred during the Nazi regime.

Official eugenics programs went on for some decades but the post-war boost towards human rights was felt also with regard to eugenics practices. Starting from the UDHR (1948), many international instruments firmly stated the anti-discrimination concept. Non-discrimination evidently means something, which goes against the eugenics of the ‘pure race’or pure physical mental status. A right to freedom of marriage was also reasserted.62 The UNESCO Declaration on Race and Racial Prejudice63 came to reaffirm non-discrimination in an age of sensible changes in many fields of social and life science.

In the last years new aspirations arose from the sequencing of human genome. The extreme theories on its use support arguments for the most advanced materialism. Genetic extremist consider that every human being can be corrected in his/her defects just by acting on his/her genes. The social action to achieve justice and reeducation are thought to be a waste of resources because acting on the genes is much faster and effective. The human genome is considered as a medium, which can be manipulated in order to achieve a ‘good human being’. Le Breton affirms that ‘[a] number of activities are seen as useless and costly because it is not possible to go against nature: the struggle for greater social justice; the attempt to promote the education of children from underprivileged environments; the struggle against social discrimination, or against the domination of women by men; the attempt to prevent delinquency and to tackle forms of urban violence by means of educational programmes or a more reasonable distribution of wealth. In short, genetics is the modern form of fate. … Genetic fundamentalism argues in favour of biological intervention upon the body rather than social interventions that seek to improve the living conditions of individuals.’64

The extreme position of genetic fundamentalism is assailable to the idea of the ‘Übermensch’of Friedrich Nietzsche, a ‘superman’which is completely over the ‘plebs’; those ‘normal’average people who are led in life by old (religious) values. The German philosopher referred to a superior man that came to action after the death of God, and all the values that He implied. This man can say of himself that he is not like the others; he is a ‘Higher Man’, because he aspires to a higher life. He can substitute God in creating new forms of life.65 A similar idea entered the modern scientific field while manipulating biological life in a way that was an absolute privilege and duty of God before the scientific rationalism substituted the religious faith. And the ‘plebs’are left out, because the costs of such manipulation will be affordable only for wealthy people. The dignity of the plebs is going to be of an inferior class in comparison with the one of the supermen.

The superman of Nietzsche creates new values and wants to stick on body dimension rather than to aspire to a spiritual life.66 The ‘superman’is the meaning of earth and should avoid to aspire to other forms of life than the one connected to the earth. Nietzsche let Zarathustra affirming: ‘I teach you the Superman. Man is something that should be overcome. What have you done to overcome him? All creatures hitherto have created something beyond themselves: and do you want to be the ebb of this great tide, and return to the animals rather than overcome man.’67 And again, ‘I entreat you, my brothers, remain true to the earth, and do not believe those who speak to you of super-terrestrial hopes.’68 The superman should not care for others, but just for himself. The belief in equality belongs to the old morality which ended with the death of God. Nietzsche affirms that the virtue for the neighbour belongs to petty people while the self-seeking of higher men goes over that, so they do not have to care about others but they care about improving themselves.69 This form of thinking fails to meet the due respect for the rights of others and it does not provide any effort to safeguard the rights of future generations. The selfishness became the value itself, the superman should disregard all connections with others and think in his proper evolution; in this way he would benefit from the humanity (in himself) of a higher man.

Jean Gayon reaffirms the connection between the philosophy of Nietzsche and Bioethics, remarking, ‘[p]robably no major philosopher has used the word “life” as much as Nietzsche did, or given it such importance. Furthermore, with the exception of Spencer, Nietzsche was the first major philosopher who felt the need for a dialogue with Darwin, contesting his principle of the struggle for existence and his theory of the origin of moral, emphasizing the necessity for philosophers to think about “heredity, ” and finally adopting an extreme version of eugenics at the very time when that ideology began to emerge.’70 Nietzsche contradicted the kingdom of ends as expressed in the 3rd formulation of the Kantian categorical imperative71 when he makes Zarathustra say, ‘what is great in man is that he is a bridge and not a goal: what can be loved in man is that he is a going-across and a down-going.’72 For Nietzsche human beings are not ends and do not create a kingdom of ends where dignity ‘go down’in every single individual. They are rather means for the realisation of the superman.

Bertrand Russell goes in the same direction of Nietzsche while affirming that the ‘old moral’tends to violate human nature as a whole trying to solve bioethical problems with non-scientific instruments, while he prefers to violate only the physical nature instead. Russell reads as follows, ‘The divines prefer a violence to human nature, which, when successfully practised, involves unhappiness, envy, a tendency to persecution, often madness. I prefer a “violence” to physical nature which is of the same sort as that involved in the steam engine or even in the use of an umbrella.’73

Extreme positions have roused many critics, some of them more constructive than others. Tim Owen, for instance, has underlined that the opposition to extremist theories can not be extremism by the part of social science. He writes: ‘Unfortunately, social science appears to be dominated by those with a strong antipathy towards genetic (or even partially genetic) explanations. In the age of the Human Genome Project social science can no longer sustain such ignorance.’74 Through the analysis and critics of different positions,75 Owen works to build a bridge (which is the aim on which bioethics itself originated, as seen), to realize a ‘post-postmodern sociology of human biotechnology.’76

Genetic research leads social sciences to consider the body with a different perspective than the classical dualism structured by René Descartes in the Meditationes de Prima Philosophia (1641).77 Tim Newton underlines that the body is not a ‘passive shell’but rather a socio-biological entity. This shows ‘the social salience of the extra discursive body, and how any account of the social world remains seriously deficient if it ignores the fact that human beings have biological bodies, and that our bodies are centrally implicated in human communication, development, maturation, and reproduction.’78

Jonas has a strong opinion against scientific extremism: ‘Let us not forget that progress is an optional goal, not an unconditional commitment, and that its tempo in particular, compulsive as it may become, has nothing sacred about it. Let us also remember that a slower progress in the conquest of disease would not threaten society, grievous as it is to those who have to deplore that their particular disease is not yet conquered, but that society would indeed be threatened by the erosion of those moral values whose loss, possibly caused by too ruthless a pursuit of scientific progress, would make its most dazzling triumphs not worth having. Let us finally remember that it cannot be the aim of progress to abolish the lot of mortality.’79

Some thinkers have argued that the progresses of science and technique justify new theories in order to achieve birth control and to define the status of future persons. Kai Chan, for instance, starts from the golden rule80 and comes to affirm that ‘in cases of contingent interests, denied benefits are not harms.’81 Therefore Chan advocates an asymmetry between harming and benefiting, and affirms, ‘[w]e have full duties not to frustrate or deny the fulfillment of interest, but limited duties to create and fulfill new interests’,82 this is the ‘Contingent Interests Principle’. This utilitarian theory ‘assign greater importance to duties to avoid harming people than to duties to benefit people by existence, thereby disapproving of population growth that degrades our world.’83 Such a conclusion leads Chan to think that there is no duty to give birth to people who will suffer during their life, and therefore they can be left out of existence.

Jonas advocates a similar position in terms of preventive eugenics, with the big difference that he refers only to potential people, and not to those who are already generated: ‘[R]ights of potential descendents are not prejudiced denying them the possibility of being generated, because it does not exist any right of existence for hypothetical individuals, not yet generated.’84 I assume that these positions are very different because if there is no right to existence for a specific person85 that will live in, for instance, a hundred years, (he/she does not have any identity, and he/she is hypothetical), nevertheless there is a right to existence of those people who are already generated and therefore actual.

6. Right to Human Genome

From the individual genetic treatment to the treatment of humanity in its entirety, the fundamental concept to consider remains human dignity. If the dignity is offended the action is ethically wrong. To respect humanity we have to abstain to artificially modify its characteristics, as to an individual we abstain to decide what is good or what is not for him/her, without consultation and scientific evidence. The oneness of humanity must be preserved in its human genome. The UNESCO Universal Declaration on the Human Genome and Human Rights86 comes to remind us of that.

Humanity as a whole as a subject of intrinsic dignity is what Immanuel Kant expressed in the third formulation of the categorical imperative: ‘[E]very rational being must so act as if he were through his maxim always a legislating member in the universal kingdom of ends.’87 The maxim is the subjective principle which moves to action. The ‘universal kingdom of ends’is the kingdom, the sphere containing all human beings, which are ends in themselves. Therefore humanity as a whole is a kingdom of ends, it must be considered as an end in itself. Martin Buber reasserts that ‘the human being does not anthropologically exist in his isolation but in the fullness of the relationship between one and the other, only the mutual action [Wechselwirkung] makes it possible the adequate comprehension of humanity.’88 Humanity is spherical in the sense that it permits the complete relatedness of human beings.

To recognize humanity in its entirety as a subject of dignity implies the assertion that humanity is a right bearer. Melo affirms that an international juridical personality should be recognized to humanity.89 In her argumentation she seconds that humanity is formed by the entire number of human beings living in the past, the present and that will live in the future. This creates the basis to consider the ‘concept of Humanity as an intergenerational community which includes the past, present and future generations’.90 To have humanity as a recognized juridical personality, would facilitate the recognition of specific rights, one of which is the right to human genome; a human genome, which is not precluded of any natural characteristic.

Humanity in its entirety is not a simple sum of human beings. Humanity is a real subject that has its own status. Max Scheler defines this brisk aspect affirming that ‘[t]he collective person is not a kind of “sum” or a kind of artificial or real collection of individual persons, nor are its properties composed of properties of individual persons; the collective persons is not contained “first” in individual persons, nor is the world of the collective person the sum of the worlds of individual persons, not even in some first stage.’91 In other words, the essence of the ‘collective person’is separate from those of its individuals and it is not calculable as a simple sum of them. Humanity is the collective person par excellence, it bears a proper essence, which must be recognized and protected in its identity through its rights.

Engelhardt affirmed, ‘[i]ndividuals might indeed come to be intolerantly consumed with the notion of fashioning a superior race of humans through genetic engineering of the germ line. Such a pursuit presumably would not be wrong in itself but only wrong if that undertaking was adverse to the interests or rights of those who did not want to join in that endeavour, or if it excluded other important possibilities of human perfection.’92 He advocated such a position with the duty of prudence, but he did not recognize the inviolability of human nature. To modify human genome means to modify humanity and so to violate its dignity and its rights. It also prejudices the free choice of future generations in having a natural human genome. Furthermore, the advocates of modification of human genome do not take sufficient care of the irreversibility problem. This problem consists in that a certain possibility remains that an irreversible modification, even though done with positive intentions (for instance to eliminate a certain genetic illness), could result in causing other genetic problems. This is a typical case where the admonition from Jonas is extremely wise, ‘the prophecy of doom is to be given greater heed that the prophecy of bliss.’93 Finally, to respond to Engelhardt, future generations may well probably be part of the group of ‘those who did not want to join’.

7. Responsibility Towards Future Generations

As stated by Sergio Magni,94 an action done today can influence the life of future persons in different ways; it can interest their living conditions as well as their number and their identity. Magni affirms that this influence is effective today in three areas; the first is demographical politics, which are able to vary the number and identity of future persons, the second is the economic politics. Saving and accumulation of capitals and management of public economics has a big influence in terms of human security and life quality in the long term. The third field is the environmental politics; consumption of resources, pollution and global warming. I want to add a forth area, the biomedical manipulation of human genome. Such a technique can affect, in irreversible ways, the genetic identity of future generations and of the entire humanity.

The ethical perspective must have priority over the pragmatic objectives of science and technique. After the influential reflection of Nietzsche and the crisis of ethics related to his philosophy, Jonas advocates a return to Kantian universalism, based on the idea of duty and expressed in the categorical imperative. The imperative of responsibility reads as follows, ‘“Act so that the effects of your action are compatible with the permanence of genuine human life”; or expressed negatively, “Act so that the effects of your action are not destructive of the future possibility of such life”; or simply, “Do not compromise the conditions for an indefinite continuation of humanity on earth”; or, again reflected positively, "In your present choices, include the future wholeness of Man among the objects of your will. .’95

Buber affirms that ‘[t]here is true responsibility only where there is a true response’.96 Responses have to be given to questions that are now silently unanswered, namely for what concerns the geopolitical disequilibrium,97 which creates burdens over millions of people and maintains the condition for creating the same burdens in the future. Responses must be given to real challenges raised by science.

In order to achieve the responsibility for human beings that will populate the earth in the future, it is nevertheless necessary to protect the natural environment in which they will have to live. Bioethics does not refer solely to the preservation of a minimal survival level of natural environment, but extends the expectations to a balanced diversity, which should not be irreversibly influenced by human actions. It is necessary to protect the freedom and existence of non-human life.

While the responsibility claimed by Jonas is related to macro-scale actions, mainly under the institutions framework, Nina Hallowell advocates a different level of responsibility. She speaks about the individual responsibility towards future generations and the fact that ‘the geneticisation of disease has profound implications for security in terms of how we think about the self and our bodies.’98 She refers to the responsibility sensed by women towards their own health and the health of their kin with respect to genetic counselling for hereditary breast/ovarian cancer. Even though genetic screening itself represents a factor of risk (physical and psychological) for women, those women who undertook it nevertheless felt responsible for the protection of their own health and that of their descendents. That is why Hallowell affirms, ‘health in the late 20th century has become a matter of individual responsibility.’99 Hallowell concludes her article with a brilliant expression, underlining that the risk taken from those women is the ‘opportunity to reconfirm the self as a self-in-relation.’100 This statement remarks once again the relational characteristic of the responsibility. Relationship and responsibility go very well together, one improves the other.

In the 2005 UN World Summit, one hundred and fifty heads of states and governments endorsed unanimously a principle defined as the, ‘Responsibility to Protect’followed by a UN Security Council resolution.101 ‘Each individual State has the responsibility to protect its populations from genocide, war crimes, ethnic cleansing and crimes against humanity. This responsibility entails the prevention of such crimes, including their incitement, through appropriate and necessary means. … The international community should, as appropriate, encourage and help States to exercise this responsibility and support the United Nations in establishing an early warning capability.’102

Melo defines the embryo selection as a crime against humanity because it allows the elimination of a human being on the basis of genetic discrimination.103 Discrimination is the basis of genocide and racial cleansing. What changes with embryo selection is the criteria for which a specific group of human beings are discriminated against and made victims of cleansing. Moreover, bioethics claims the defence from crime against humanity in another sense, the manipulation of the human genome. Human genome is recognized as the heritage of humanity,104 the World Health Organisation (WHO) affirms, ‘human DNA is common to all human beings (DNA itself is common to all living things), past and present, and is therefore in some sense foundational, imbued with not only biological, but also historical and even moral significance.’105 The manipulation of human genome has therefore to be considered as a crime against humanity and demands for the responsibility to protect.

The responsibility to protect humanity in its human genome falls first of all on states, which, as expressed in the 2005 UN World Summit, have the responsibility to protect their populations (present and future), and through them the whole of humanity. This must also be achieved by an adequate juridical framework. In cases where a state fails in this regard, the international community and the UN shall react. Different international instruments for the protection of human genome already exist106 and the international community has a responsibility to make them effective.

8. Right of Future Generations

Rights of future generations are collective not individual rights. The relevance of this distinction becomes evident through the confrontation among Anthony D’Amato and Edith Brown Weiss.107 D’Amato starts imagining the persons who will live when a specific amount of time will have passed. He then affirms that our intervention for the protection of future generations will interfere with the natural composition of the imagined persons.108 In other words, the intervention to protect future generations will deprive the imagined individuals of their lives, favouring the birth of different individuals; therefore the protection of future generations must not be a criterion for human aging. D’Amato affirms, ‘future generations are not an abstraction; they consist of individuals. The particularity of the individuals is apparent when we consider how lucky it is for anyone to be born.’109 Weiss, on the contrary, affirms that intergenerational rights are not individual rights of specific imagined persons. ‘They are, instead, generational rights, which must be conceived in the temporal context of generations. Generations hold these rights as groups in relation to other generations — past, present and future.’110

Weiss supports the idea of a representative for future generations, ‘[e]nforcement of these intergenerational rights is appropriately done by a guardian or representative of future generations as a group, not of future individuals, who are of necessity indeterminate. While the holder of the right may lack the capacity to bring grievances forward and hence depends upon the representative’s decision to do so, this inability does not affect the existence of the right or the obligation associated with it.’111

Nicolás Calera stresses the need of a representative for collective rights, otherwise these rights remain a fiction. Collective subjects express themselves in relation with their rights, through a representative; ‘any theory of collective rights shall recognize that those rights would not exist, could not exist, if some determined individuals (representatives), would not formulate, express and represent them. Without representatives there could not be a reasonable and effective exercise of collective rights’.112 It follows the recognition that future generations bear collective rights and implies the urgency for future generations to be represented in the actual human rights discourse.

Benedek Jávor affirms that towards future generations ‘we must restrain ourselves from all the decisions and actions that curtail the freedom of choice of the future generations unless the rights of the present generations give sufficient reason to act otherwise.’113 I would like to enlarge the concept using three basic principles of intergenerational equity proposed by Weiss, conservation of options, conservation of quality and conservation of access.114 While Weiss refers to environmental conservation, I will now briefly elaborate, extending these three domains to bioethics. Conservation of option refers to the responsibility of every generation to preserve biodiversity in order to not restrict the options of future generations to solve their problems, to comply with their values and to be part of the human family. Conservation of quality relates to the quality of the natural resources and biodiversity, as well as the living conditions that should persist in the same terms in the transit from one generation to another. Conservation of access deals with the unaltered availability that every generation must have to access the legacy, cultural, biological and environmental, of previous generations and human heritage.

Jörg Tremmel provides a good definition in order to establish to what extent present generations must respect future generations: ‘Generational justice is attained when the opportunities for succeeding generations to satisfy their needs are at least as much as those of the generation wielding power today.’115

The global scale of action that concerns future generations implies that the national institutions dealing with their rights, even though extremely positive, are not enough. The challenges to the future come first in the global scale and require a global response. Global bioethics advocates an international action for the present and for the future, and sees the international community and the UN as its natural theatre. Giuliano Pontara affirms that it is a mistake to claim that every state bears responsibilities only towards future generations of its proper nationals. The dynamic of history where states have birth, change and come to an end, undermines the connection between states and citizens over the time.116 Globalisation brings into play other fundamental actors, different than states, also giving them a big influential role for future generations. Jávor confirms that ‘[i]nternational regimes, like the WTO [World Trade Organisation], institutions, like World Bank or IMF [International Monetary Found] can effectively influence decisions of the national governments. So, if we would like to integrate the interests of coming generations in decision making, it is unavoidable to control somehow not only the traditional nation-state, but also these international regimes.’117

9. Final Considerations

Buber affirms that, ‘[t]he fundament of being-human being-with-human being [Mensch-mit-Mensch-seins] is this duplicity and unity: The desire of every human being to be confirmed for what he is, for what he will become, and the innate human ability to confirm other equal human beings in the same way.’118 Who can guarantee that human beings will remain all the same with the advent of genetic manipulation? In the worst scenario, the world will face a manipulated humanity. In a less terrific option, there will be groups of individual who will have the possibility to afford genetic modification and would have better genetic constitutions, whilst a large majority of the world population would remain ‘naturally imperfect’. One of the scopes of bioethics is to keep avoiding these scenarios. It must continue to defend human dignity, the right to health, non-discrimination and the humanity in its wholeness; therefore in its human genome. Finally, the bioethical rights of future generations have to be protected against irreversible offences. These are the main challenges for global bioethics and for intergenerational justice. The fact that the world is becoming one in many senses, as shown by Peter Singer,119 and the challenges of the age of risk, risen by the progress of science and technique, demand a determined global bioethical response.

10. Bibliography

10.1. Books

  • Beck, Ulrich, Risk Society: Towards a New Modernity. Translated by Mark Ritter, London: Sage Publications, 1992.
  • Brody, Baruch A., Mark A. Rothstein, Laurence B. McCullough and Mary Anne Bobinski, Medical Ethics: Analysis of the Issues Raised by the Codes, Opinions, and Statements. Washington D. C.: Bureau of National Affairs, 2001.
  • Buber, Martin, Urdistanz und Beziehung. 4th Ed. Heidelberg: Lambert Schneider, 1978.
  • Calera, Nicolás López, ¿Hay derechos colectivos? Barcelona: Editorial Ariel, 2000.
  • Concannon, Liam, Planning for Life: Involving Adults with Learning Disabilities in Service Planning. New York: Routledge, 2005.
  • Dawkins, Richard. The Selfish Gene. 3rd Ed. Oxford: Oxford University Press, 2006.
  • Descartes, René, Meditations on First Philosophy. Translated by and Donald A. Cress, 3rd Ed., Indianapolis: Hackett Publishing Company, 1993.
  • Hottois, Gilbert, Essais de philosophie bioéthique et biopolitique. Paris: Vrin, 1999.
  • Jonas, Hans. Tecnica, medicina ed etica: Prassi del principio responsabilità. Translated by Paolo Becchi and Anna Benussi, Torino: Giulio Einaudi Editore, 1997.
  • Jonas, Hans. The Imperative of Responsibility: In Search of an Ethics for the Technological Age. Chicago: University of Chicago Press, 1984.
  • Kant, Immanuel, Critique of Practical Reason. Translated by Werner S. Pluhar, Indianapolis: Hackett Publishing Company, 2002.
  • Kant, Immanuel, Grounding for the Metaphysics of Morals. Translated by James W. Ellington, 3rd Ed. Indianapolis: Hackett Publishing Company, 1993.
  • Khan, L. Ali, The Extinction of Nation-State: A World without Borders. The Hague: Kluwer Law International, 1996.
  • Kramarae, Cheris and Dale Spender, Routledge International Encyclopedia of Women. Vol. 2, New York: Routledge, 2000.
  • Malthus, Thomas, An Essay on the Principle of Population. Edited by Antony Flew, Harmondsworth: Penguin, 1982.
  • Nietzsche, Friedrich W., Thus Spoke Zarathustra: A Book for Everyone and No One. Translated by Reginald J. Hollingdale, 2nd Ed., New York: Penguin Books, 1969.
  • Parfit, Derek. Reasons and Persons. Oxford: Oxford University Press, 1986.
  • Pontara, Giuliano, Ética y generaciones futuras. Translated by Isabel Riera, Barcelona: Editorial Ariel, 1996.
  • Potter, Van Rensselaer, Bioethics: Bridge to the Future. Englewood Cliffs: Prentice-Hall, 1971.
  • Russell, Bertrand, What I believe. 2nd Ed., London: Routledge, 2004.
  • Savater, Fernando, Etica come amor proprio. Translated by David Osorio Lovera and Cristina Paternò, Roma-Bari: Laterza, 1998.
  • Scheler, Max, Formalism in Ethics and Non-Formal Ethics of Values. Translated by Manfred S. Frings and Roger L. Funk, 5th Ed., Evanston: Northwestern University Press, 1973.
  • Singer, Peter, One World: The Ethics of Globalization. 2nd Ed., New Haven: Yale University Press, 2004.
  • Smith, Adam, The Theory of Moral Sentiments. New York: Cosimo, 2007.
  • Smith, Adam, The Wealth of Nations. New York: Modern Library, 2000.
  • Wattles, Jeffrey. The Golden Rule. Oxford: Oxford University Press, 1996.

10.2. Contributions in Edited Books

  • Buber, Martin, ‘Die Frage an den Einzelnen’, pp. 197-270 in Martin Buber, Das Dialogische Prinzip. 7th Ed., Gerlingen: Lambert Schneider, 1994 (a).
  • Buber, Martin, ‘Elemente des Zwischenmenschlichen’, pp. 271-298 in Martin Buber, Das Dialogische Prinzip. 7th Ed., Gerlingen: Lambert Schneider, 1994 (b).
  • Buber, Martin, ‘Zwiesprache’, pp. 139-196 in Martin Buber, Das Dialogische Prinzip. 7th Ed., Gerlingen: Lambert Schneider, 1994 (c).
  • Callahan, Daniel, ‘Bioethics’, pp. 247-256 in Warren T. Reich (ed.), Encyclopaedia of Bioethics, 2nd Ed., vol. 1. New York: Prentice Hall, 1995.
  • Caney, Simon, ‘Cosmopolitan Justice and Equalizing Opportunities’, pp. 122-144 in Thomas W. Pogge (ed.), Global Justice. Oxford: Blackwell Publishing, 2001.
  • Casonato, Carlo, ‘Introduzione’, pp. 1-6 in Carlo Casonato and Cinzia Piciocchi (eds.), Biodiritto in Dialogo. Padova: Cedam, 2006.
  • Feinberg, Joel, ‘The Child’s Right to an Open Future’, pp. 112-123 in Randall Curren (ed.), Philosophy of Education: An Anthology. Oxford: Blackwell Publishing, 2006.
  • Gayon, Jean ‘Nietzsche and Darwin’, pp. 154-197 in Jane Maienschein and Michael Ruse (eds.), Biology and the Foundation of Ethics. Cambridge: Cambridge University Press, 1999.
  • Grodin, Michael A., ‘Introduction: The Historical and Philosophical Roots of Bioethics’, pp. 1-26 in Michael A. Grodin (ed.), Meta Medical Ethics: The Philosophical Foundations of Bioethics. Dordrecht: Kluwer Academic Publishers, 1995.
  • Hinsch, Wilfried, ‘Global Distributive Justice’, pp. 55-75 in Thomas W. Pogge (ed.), Global Justice. Oxford: Blackwell Publishing, 2001.
  • Jávor, Benedek, ‘Institutional protection of succeeding generations — ombudsman for future generations in Hungary’, pp. 282-298 in Jörg Tremmel (ed.), Handbook of Intergenerational Justice. Cheltenham: Edgar Elgar Publishing, 2006.
  • Melo, Helena, ‘O Diagnóstico Pré-Implantatório e os Direitos das Gerações Futuras’, pp. 155-204 in Rui Nunes, Helena Melo and Cristina Nunes (eds.), Genoma e Dignidade Humana. Coimbra: Gráfica de Coimbra, 2002.
  • Pogge, Thomas W., ‘Priorities of Global Justice’, pp. 6-23 in Thomas W. Pogge (ed.), Global Justice. Oxford: Blackwell Publishing, 2001.
  • Portocarrero, Maria Luisa, ‘Autonomia da pessoa e determinismo genético’, pp. 9-24 in Rui Nunes, Helena Melo and Cristina Nunes (eds.), Genoma e Dignidade Humana. Coimbra: Gráfica de Coimbra, 2002.

10.3. Articles

  • Barry, Norman P., ‘In Defence of the Invisible Hand’, pp. 133-148 in Cato Journal, vol. 5, no. 1, 1985.
  • Chan, Kai M. A., ‘The Golden Rule and the Potentiality Principle: Future Persons and Contingent Interests’pp. 33-42 in Journal of Applied Philosophy, vol. 21, no. 1, 2004.
  • D’Amato, Anthony, ‘Do We Owe a Duty to Future Generations to Preserve the Global Environment? ‘, pp. 190-198 in The American Journal of International Law, vol. 84, no. 1, 1990.
  • Elliott, Michael A., ‘Human Rights and the Triumph of the Individual in World Culture’, pp. 343-363 in Cultural Sociology, vol. 1, no. 3, 2007.
  • Engelhardt, H. Tristam Jr., ‘Persons and Humans: Refashioning Ourselves in a Better Image and Likeness’, pp. 281-295 in Zygan, vol. 19, no. 3, 1984.
  • Finkler, Kaja, ‘Can Bioethics Be Global and Local, or Must It Be Both? ‘, pp. 155-179 in Journal of Contemporary Ethnography, vol. 37, no. 2, 2008.
  • Hallowell, Nina ‘Doing the Right Thing: Genetic Risk and Responsibility’, pp. 597-621 in Sociology of Health and Illness, vol. 21, n. 5, 1999.
  • Jávor, Benedek, ‘Giving a Voice to Future Generations’, presented at the World Science Forum (Budapest 8-10 November 2007), available in Védegylet (Protect the Future) web site, available at: (Consulted on (14 June 2008), 2007.
  • Jonas, Hans, ‘Philosophical Reflections on Experimenting With Human Subjects’, pp. 219-277 in Daedalus, vol. 98, no. 2, 1969.
  • Larrère, Raphaël and Catherine Larrère, ‘Should nature be respected? ‘, pp. 9-34 in Social Science Information, vol. 46, no. 1, 2007.
  • Le Breton, David, ‘Genetic Fundamentalism or the Cult of The Gene’, pp. 1-20 in Body & Society, vol. 10, no. 4, 2004.
  • Magni, Sergio F., ‘Responsabilità e giustizia verso le generazioni future’in Cosmopolis, vol. 2 no. 1, available at: (consulted on 10 June 2008), 2007.
  • Newton, Tim, ‘Truly Embodied Sociology: Marrying the Social and the Biological? ‘, pp. 20-41 in Sociological Review, vol. 51, no. 1, 2003.
  • Nunes, Rui, ‘Deafness, Genetics and Dysgenics’, pp. 25-31 in Medicine, Health Care and Philosophy, vol. 9, 2006.
  • Nys, Herman, ‘Editorial: Towards an International Treaty on Human Rights and Biomedicine? Some Reflections Inspired by UNESCO’s Universal Declaration on Bioethics and Human Rights’, pp. 5-8 in European Journal of Health Law, vol. 13, 2005.
  • Owen, Tim, ‘Genetic-Social Science and the Study of Human Biotechnology’, pp. 897-917 in Current Sociology, vol. 54, no. 6, 2006.
  • Potter, Van Rensselaer, ‘Bioethics: The Science of Survival’, pp. 127-153 in Perspectives in Biology and Medicine, vol. 14, 1970.
  • Preis, Ann-Belinda S., ‘Human Rights as Cultural Practice: An Anthropological Critique’, pp. 286-315 in Human Rights Quarterly, vol. 18, no. 2, 1996.
  • Reardon, Jenny, ‘The Human Genome Diversity Project: A Case Study in Coproduction’, pp. 357-388 in Social Studies of Science, vol. 31, no. 3, 2001.
  • Tremmel, Jörg, ‘Intergenerational Justice’, pp. 31-34 in Elderly Client Adviser, vol. 9, no. 1, 2003.
  • Weiss, Edith Brown, ‘Our Rights and Obligations to Future Generations for the Environment’, pp. 198-207 in The American Journal of International Law, vol. 84, no. 1, 1990.
  • Willis, Evan, ‘The “New” Genetics and the Sociology of Medical Technology’, pp. 170-183 in Journal of Sociology, vol. 34, no. 2, 1998.
  • Wynne, Bryan, ‘Reflexing Complexity: Post-genomic Knowledge and Reductionist Returns in Public Science’, pp. 67-94 in Theory Culture Society, vol. 22, no. 5, 2005.

10.4. Reports and other Sources

  • Food and Agriculture Organisation of the United Nations (FAO), The State of Food Insecurity in The World 2006, published in 2006, available at (consulted on 05 June 2008).
  • World Health Organization, Genetics, Genomics and the Patenting of DNA: Review of Potential Implications for Health in Developing Countries, published in 2005, available at (consulted on 16 June 2008).

10.5. Treaties and Other Instruments

  • 2005 World Summit Outcome Document, Resolution A/60/L. 1, United Nation General Assembly 60th session, 14 September 2005.
  • Declaration on Race and Racial Prejudice, adopted on 27 November 1978 by the 20th session of the General Conference of the United Nations Educational, Scientific and Cultural Organization.
  • Declaration on the Responsibilities of the Present Generations Towards Future Generations, adopted on 12 November 1997 by the 29th session of the General Conference of the United Nations Educational, Scientific and Cultural Organization.
  • International Covenant on Civil and Political Rights, United Nation General Assembly Resolution 2200A (XXI), 16 December 1966, entry into force 23 march 1976.
  • International Covenant on Economic, Social and Cultural Rights, United Nation General Assembly Resolution 2200A (XXI), 16 December 1966, entry into force 3 January 1976.
  • International Declaration on Human Genetic Data, adopted unanimously and by acclamation on 16 October 2003 by the 32nd session of the General Conference of the United Nations Educational, Scientific and Cultural Organization.
  • Resolution AIRES/53/152, United Nations General Assembly 53rd session, 9 December 1998.
  • Resolution S/RES/1674, United Nation Security Council 5430th meeting, 28 April 2006.
  • Universal Declaration of Human Rights, United Nation General Assembly Resolution 217A (III), 10 December 1948.
  • Universal Declaration on Bioethics and Human Rights, adopted by acclamation on 19 October 2005 by the 33rd session of the General Conference of the United Nations Educational, Scientific and Cultural Organization.
  • Universal Declaration on the Human Genome and Human Rights, adopted unanimously and by acclamation on 11 November 1997 by the 29th session of the General Conference of the United Nations Educational, Scientific and Cultural Organization.

  1. Between three hundred thousand and four hundred thousand people were coercively sterilized because they were considered bearers of physical or mental hereditary illness. (Concannon, 2005, p. 18). Motives for the sterilization also included sexual, religious and political orientation. Moreover, under the program ‘Aktion T4’, between two hundred thousand and three hundred thousand adults were killed due to their physical or mental status defined as ‘Lebensunwertes Leben’; life unworthy of life (Concannon, 2005, p. 20). ↩︎

  2. Callahan, 1995, p. 249. ↩︎

  3. Casonato, 2006, p. 2. ↩︎

  4. In 1970 he wrote the article Bioethics: The Science of Survival and in 1971 the book Bioethics: Bridge to the Future. In this book Potter intended to reconcile the sciences of life and living systems (bio), with the knowledge of human systems and values (ethics). The creation of bioethics is urged by Potter to face the risk of survival brought by the division between scientific and humanistic knowledge. ↩︎

  5. For Kant moral values are based on the rational universal principles. ‘Practical principles are propositions that contain a general determination of the will, having under it several practical rules. They are subjective, or maxims, if the condition [under which they apply] is regarded by the subject as valid only for his will; but they are objective, or practical laws, if the condition is recognized as objective, i.e., as valid for the will of every rational being.’ Kant, 2002, p. 29, italics of Kant and square brackets of the translator. ↩︎

  6. Finkler, 2008, p. 173. ↩︎

  7. Preis, 1996, p. 290. ↩︎

  8. Khan, 1996, p. 105. ↩︎

  9. Reardon, 2001, pp. 380-381. ↩︎

  10. Savater, 1998, p.7, my translation C. G., Italics of the author. ↩︎

  11. Brody, et al., 2001, p. 4. ↩︎

  12. Grodin, 1995, p. 2. ↩︎

  13. Non-maleficence: Primum non nocere - do not harm the patient, it includes the consideration of cost-benefits. Autonomy: The patient must express free and informed consent to medical treatments, as far as possible. Beneficence: The health treatment must be provided to help someone in need. Justice: This principle is based in equity, the fair treatment of all persons in need. ↩︎

  14. Engelhardt, 1984, p. 283. ↩︎

  15. Brody, et al., 2001, p. 4. ↩︎

  16. Jonas, 1984, p. 9. ↩︎

  17. Beck, 1992, p. 22, italics of the author and German citation of the translator. ↩︎

  18. Willis, 1998, p. 178. ↩︎

  19. Finkler, 2008, p. 172. ↩︎

  20. Le Breton, 2004, p. 19. ↩︎

  21. Finkler, 2008, p. 173. ↩︎

  22. Wynne 2005, p. 78. ↩︎

  23. Willis, 1998, pp. 180-181. ↩︎

  24. Larrère and Larrère, 2007. ↩︎

  25. Ibidem, 2007, pp. 19-21. ↩︎

  26. Elliott, 2007, p. 353. ↩︎

  27. Hottois, 1999, p. 119. ↩︎

  28. Melo, 2002, p. 201, my translation C. G. ↩︎

  29. Kant, 1993, p. 36. ↩︎

  30. Universal Declaration on the Human Genome and Human Rights, adopted unanimously and by acclamation on 11 November 1997 by the 29th session of the General Conference of the United Nations Educational, Scientific and Cultural Organization. ↩︎

  31. Melo, 2002, p. 195, my translation C. G. Article 2(b) of the Universal Declaration on the Human Genome and Human Rights, cit., affirms, ‘dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity.’ Maria Luisa Portocarrero (2002, p. 21), underlines that the relational condition of human person puts in question the determinism of genetic screening because personal autonomy means that the reaction to illness varies depending on the way the ill-person will react in the situation. This relies on life significance as well as interpersonal relationships. ↩︎

  32. This principle is clearly stated in article 24 of UNESCO Universal Declaration on the Human Genome and Human Rights, cit. ↩︎

  33. Richard Dawkins has a brilliant definition of genes to take into consideration while thinking of genetic manipulation: ‘Genes, like diamonds, are forever, but not quite in the same way as diamonds. It is an individual diamond crystal that lasts, as an unaltered pattern of atoms’ (2006, p. 35). From this assumption while Dawkins advocates genetic manipulation, I go in the opposite direction: The protection of the uniqueness of the genome. ↩︎

  34. Universal Declaration of Human Rights, United Nation General Assembly Resolution 217A (III), 10 December 1948. ↩︎

  35. In the UDHR, other direct references to human dignity are present again in the preamble and in articles 22 and 23(3). ↩︎

  36. International Covenant on Civil and Political Rights, General Assembly Resolution 2200A (XXI), 16 December 1966, entry into force 23 march 1976. ↩︎

  37. International Covenant on Economic, Social and Cultural Rights, General Assembly Resolution 2200A (XXI), 16 December 1966, entry into force 3 January 1976. ↩︎

  38. In the preamble of both International Covenants. ↩︎

  39. Nys, 2005, pp. 6-7. ↩︎

  40. Universal Declaration on the Human Genome and Human Rights, cit. ↩︎

  41. Resolution AIRES/53/152, United Nations General Assembly 53rd session, 9 December 1998. ↩︎

  42. In the Universal Declaration on the Human Genome and Human Rights, cit., other direct references to human dignity are present in articles 2(b), 6, 10, 11, 12, 15, 21 and 24. ↩︎

  43. International Declaration on Human Genetic Data, adopted unanimously and by acclamation on 16 October 2003 by the 32nd session of the General Conference of UNESCO. ↩︎

  44. In the International Declaration on Human Genetic Data, cit., other direct reference to human dignity are present in the preamble (2 more times) and in articles 7, 26 and 27. ↩︎

  45. Universal Declaration on Bioethics and Human Rights, adopted by acclamation on 19 October 2005 by the 33rd session of the General Conference of UNESCO. ↩︎

  46. In the Universal Declaration on Bioethics and Human Rights, cit., other direct references to human dignity are present in articles 2(d), 10, 11, 12 and 28. ↩︎

  47. The UDHR, preamble and articles 1, 2, 7, 16(1), 23. The UN International Covenant on Civil and Political Rights, cit., preamble and articles 2(1), 3, 4(1), 6(1), 20(2), 24(1), 25 and 26. The UN International Covenant on Economic, Social and Cultural Rights, cit., preamble and articles 2(2), 10(3) and 7(i). The UNESCO Universal Declaration on the Human Genome and Human Rights, cit., preamble and articles 2(a) and 6. The UNESCO International Declaration on Human Genetic Data, cit., article 7. The UNESCO Universal Declaration on Bioethics and Human Rights, cit., preamble and articles 10, 11 and 14(2). ↩︎

  48. Willis, 1998, p. 179. ↩︎

  49. UNESCO International Declaration on Human Genetic Data, cit., article 3. ↩︎

  50. Nunes, 2006. Nunes differentiates between a positive dysgenics with the aim of ‘increase the overall number of people with a particular genetic trait’ through combined marriages and reproductive technologies, and a negative dysgenics achieved by ‘prenatal or pre-implantation selection and abortion’ (2006, p. 29). ↩︎

  51. Ibidem, p. 25. ↩︎

  52. Ibidem, p. 27. ↩︎

  53. Ibidem, p. 27. ↩︎

  54. Ibidem, p. 26. ↩︎

  55. Feinberg, 2006, p. 113. Who can assure that the forthcoming individuals would prefer the pre-selected genetic constitution? Who can responsibly anticipate the best interest of the child? This seems to be the most difficult question to give an answer to, because there can be estimations, but no certainties. Responses given in the effectiveness of a situation already decided cannot be a response to this bioethical problem. For instance if we ask to a planned deaf child if he/she feels happy to be deaf, whatever answer can not be taken as exemplar because there is no possibility to make the opposite question to the same child in case he could hear. ↩︎

  56. Caney, 2001, p. 126. The author uses data from the United Nation Development Program (UNDP) to affirm that 9 billion dollars per year would be sufficient for granting water and sanitation for all. He provocatively quotes then other data: Annual expenditure in the USA and Europe for pet food: 17 billion, annual expenditure for ice cream just in Europe: 11 billion, European annual expenditure for cigarettes: 50 billion. These figures highlight the economical disparities behind global (in)justice. ↩︎

  57. Willis, 1998, p. 181. ↩︎

  58. Pogge, 2001, p. 15. ↩︎

  59. Hinsch, 2001, p. 55. ↩︎

  60. Food and Agriculture Organisation of the United Nations (FAO), The State of Food Insecurity in The World 2006, published in 2006, available at (consulted on 05 June 2008). ↩︎

  61. Malthus, 1982. ↩︎

  62. The UDHR, article 16. The UN International Covenant on Civil and Political Rights, cit., article 23. The UN International Covenant on Economic, Social and Cultural Rights, cit., article 10(1). ↩︎

  63. Declaration on Race and Racial Prejudice, adopted and proclaimed on the 27 November 1978 by the 20th session of the General Conference of the United Nations Educational, Scientific and Cultural Organization. ↩︎

  64. Le Breton, 2004, p. 15. ↩︎

  65. ‘You creating ones, you higher men!’ (Nietzsche, 1969, p. 301). ↩︎

  66. This was meant in contrast to religious and in particular Christian philosophy. ↩︎

  67. Nietzsche, 1969, p. 41, italics of the author. ↩︎

  68. Ibidem, p. 42, italics of the author. ↩︎

  69. See the whole chapter dedicated to the higher man in Thus spoke Zarathustra (Nietzsche, 1969, pp. 296-305). ↩︎

  70. Gayon, 1999, p. 155. ↩︎

  71. Kant, 1993, p. 43: ‘[E]very rational being must so act as if he were through his maxim always a legislating member in the universal kingdom of ends.’ ↩︎

  72. Nietzsche, 1969, p. 44, italics of the author. ↩︎

  73. Russell, 2004, p. 42. He refers specifically to the issue of demographic control. ↩︎

  74. Owen, 2006, p. 898. ↩︎

  75. Owen (2006), goes over: Reductionism, essentialism, reification, functional teleology, postmodern theory, emotive aversion, duality of structure, genetic fatalism and the oversocialized gaze. ↩︎

  76. Owen, 2006, p. 914. ↩︎

  77. Descartes, 1993. ↩︎

  78. Newton, 2003, p. 35. ↩︎

  79. Jonas, 1969, p. 245. ↩︎

  80. One of the formulations is: ‘Treat others as you want others to treat you’ (Wattles, 1996, p. 166). ↩︎

  81. Chan, 2004, p. 36. ↩︎

  82. Ibidem, p. 38. ↩︎

  83. Ibidem, p. 41. This unhappy phrasing is due to the discussion around the ‘repugnant conclusion’ arisen from the philosopher Derek Parfit in Reasons and Persons (1985, p. 388), in which speculations are made on the topic of demographic growth from an utilitarian perspective. ↩︎

  84. Jonas, 1997, p. 130, my translation C. G. ↩︎

  85. I underline the word specific because it refers to a specific human being that can already be taught. I sustain that there can not be a right of existence for an hypothetical - specific human being. There is a right to existence for humanity and therefore for human beings of whom we can not predict the connotations and identity, which are then not specific. ↩︎

  86. UNESCO Universal Declaration on the Human Genome and Human Rights, cit. ↩︎

  87. Kant, 1993, p. 43. ↩︎

  88. Buber, 1994(b), p. 290, my translation C. G. ↩︎

  89. Melo, 2002, pp. 172-173. ↩︎

  90. Ibidem, p. 157, my translation C. G. What has been just affirmed in no sense must be understood as a process of transforming individuals in members of the mass, where as affirmed by Buber, ‘the person is cast into doubt by the fact that is being made collective’ (1994(a), p. 263, my translation C. G.). ↩︎

  91. Scheler, 1973, p. 522. ↩︎

  92. Engelhardt, 1984, p. 289. ↩︎

  93. Jonas, 1984, p. 31. ↩︎

  94. Magni, 2007. ↩︎

  95. Jonas, 1984, p. 11. ↩︎

  96. Buber, 1994(c), p. 161, my translation C. G. ↩︎

  97. I refer to the laws of the free market as a regulating mechanism in the international relations. The Smithian ‘invisible hand’ (Smith, 2000, p. 485 and Smith, 2007, p. 187) is not really working, as noticed by many intellectuals over the last decades. Norman Barry may be right when affirming that ‘[m]uch of the contemporary criticism of the Invisible Hand theory is directed less to theoretical concerns and more to the alleged real-world deficiencies - economic, political, and ethical - of a system based on the spontaneous interaction of basically selfish economic agents’ (1985, p. 143), but the theory, which is so far away from good practice is hardly defensible. ↩︎

  98. Hallowell, 1999, p. 616. ↩︎

  99. Hallowell, 1999, p. 615. The author continues shortly after: ‘The rhetoric of the new genetics constructs individuals as having a responsibility to obtain genetic knowledge and subsequently attempt to modify their risk.’ ↩︎

  100. Ibidem, p. 617, italics mine C. G. ↩︎

  101. Resolution S/RES/1674, United Nation Security Council 5430th meeting, 28 April 2006. ↩︎

  102. Paragraphs 138 of the 2005 World Summit Outcome Document, Resolution A/60/L.1, United Nation General Assembly 60th session, 14 September 2005. ↩︎

  103. Melo, 2002, pp. 192-194. ↩︎

  104. Universal Declaration on the Human Genome and Human Rights, cit., article 1; Declaration on the Responsibilities of the Present Generations Towards Future Generations, adopted on 12 November 1997 by the 29th session of the General Conference of the United Nations Educational, Scientific and Cultural Organization, article 6 (even if not directly stated). ↩︎

  105. World Health Organization (WHO, Genetics, Genomics and the Patenting of DNA: Review of Potential Implications for Health in Developing Countries, published in 2005, available at (consulted on 16 June 2008), p. 31. ↩︎

  106. Beyond the Universal Declaration on the Human Genome and Human Rights, cit., it must be mentioned article 6 of the Declaration on the Responsibilities of the Present Generations Towards Future Generations, cit. ↩︎

  107. D’Amato, 1990 and Weiss, 1990. ↩︎

  108. D’Amato refers specifically to the interventions to preserve the environment and affirms that ‘it will affect the conditions under which human procreation takes place’ (1990, p. 191). ↩︎

  109. D’Amato, 1990, p. 194. The conclusion of D’Amato’s reasoning is marked with a general sense of prudence: ‘We should not limit our actions to those we are able to determine now as directly or indirectly benefiting ourselves or our descendants. Rather, we should cultivate our natural sense of obligation not to act wastefully or wantonly even when we cannot calculate how such acts would make any present or future persons worse off’ (1990, p. 198). ↩︎

  110. Weiss, 1990, p. 205. ↩︎

  111. Ibidem, p. 205. ↩︎

  112. Calera, 2000, p. 139. ↩︎

  113. Jávor, 2006, p. 284. Larrère and Larrère (2007, p. 21) sustain that to guarantee freedom of choice means; avoiding anything irreversible, preserve biological diversity and guarantee the diversity of use and representations (except those uses which erode diversity). ↩︎

  114. Weiss, 1990, pp. 202-203. ↩︎

  115. Tremmel, 2003, p. 33. ↩︎

  116. Pontara, 1996, p. 187. ↩︎

  117. Jávor, 2007, p. 2. ↩︎

  118. Buber, 1978, p. 28, my translation and italics C. G. ↩︎

  119. Singer, 2004. ↩︎