10th Forum of National Ethics Councils (NEC Forum) Lisbon 11 - 12 October 2007

New bioethics frontiers: Ethics in the global world – A perspective of Brazil1 Volnei Garrafa2

Introduction During its thirty-five year history, bioethics is one field of applied ethics that has made considerable progress. As it has evolved, three basic referents have underpinned its conceptual base and epistemological status:

1. A necessarily multi/inter/trans-disciplinary structure, which allows broad analysis and “re-connection” between different knowledge nuclei and different angles of issues observed on the basis of an interpretation of the complexity of: a) scientific and technological knowledge; b) historical knowledge accumulated by society; c) the actual reality that surrounds us and of which we form part 2. A respect for the moral plurality observed in post-moral secularised democracies, which guides the search for equilibrium and the observance of specific social referents that direct individuals, societies and nations towards necessary peaceful co-existence, without imposing moral standards on one another.

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Paper presented at the 10th Forum of National Ethics Councils of the European Commission. Lisbon, Portugal, 11 October 2007. 2 PhD, Professor and Coordinator of the UNESCO Chair in Bioethics at the University of Brasília, Brazil [email protected] www.bioetica.catedraunesco.unb.br Editor of la Revista Brasileira de Bioética - RBB; President of the Council, Director of the Red Latino-Americana y del Caribe de Bioética de la Unesco – REDBIOÉTICA. 1

3. The need to initiate a responsible discussion with regard to the contradiction that exists between ethical universalism and ethical relativism, starting with the difficulty of establishing universal bioethical paradigms, which leads to the need to (re)structure bioethical discourse using more dynamic and real categories and tools, such as communication, language, coherence, reasoning, rationality, consensus and others (1).

With its particular evolution process, bioethics started out, initially, as an area of knowledge beyond the “science of survival” proclaimed by Potter (2,3), becoming a specific tool in the complex process of discussion, development and consolidation of democracies, citizenship, human rights and social justice. One of the aims of this presentation is to demonstrate the need to construct a new and broader epistemological status for bioethics, based on the increasing social and economic inequalities between North and South. As (bio) ethical problems in these two regions are totally different from one another and call for solutions which are also different, the need arises for a critical analysis to find genuine possibilities for a merely descriptive, analytical and neutral bioethics which puts intervention in this particular context into objective terms. And, furthermore, it is also necessary to put forward new, broader directions, capable of confronting the bioethical macro-problems that are identified daily in the peripheral regions of the world, and in particular Latin America, Africa and Asia.

So, based on an analysis of the ethical situations and conflicts that take account of the different moralities directly or indirectly related to human life in its broadest sense, a new Latin American lay bioethics, which aims to go beyond the four traditional principles of autonomy, beneficence, non-maleficence and justice, seeks to demonstrate the need to work with more appropriate theoretical tools and additional methodologies. In this way, bioethics could have a significant impact on problems, be they chronic (daily, long-standing problems, such as social exclusion, discrimination, poverty, vulnerability, abortion, euthanasia, etc.) or emerging (on the limits or frontiers of knowledge, such as genomics, organ and tissue transplants, new reproductive technologies, etc.), at local, national or international level (4).

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Need for a broader epistemology for bioethics – history and justification The word epistemology comes from the Greek epistéme (science, knowledge) and lógos (science, study). Epistemology is the branch of philosophy devoted to problems associated with beliefs and knowledge, and is concerned with the way in which man knows things. It is the critical study of principles, hypotheses and results of existing sciences, that is to say, it is the theory of science or the theory of knowledge (5).

Every science, discipline or theory needs to have its conceptual base, its epistemology, determined at least in minimal terms, and this will serve as a support for its application and development. According to Olivé (6), epistemology is the discipline that critically analyses cognitive practices through which the different forms of knowledge are generated, applied and evaluated; it is essential to ethics, particularly to the field of applied ethics, such as bioethics. According to this author, epistemology is necessary to determine the field and mode of knowledge in which bioethics is located, in order to be able to organise its tools harmoniously and give some consistency to its idea of wholeness.

According to the Encyclopedia of Bioethics, moral epistemology consists of the critical and systematic study of morality as a body of knowledge. It is principally concerned with the mode or, if one exists, rational justification of morality. In addition, it attempts to discover whether the prerequisites of morality are strictly true or false, and whether moral prerequisites are relatively or universally true (7).

Both epistemology and ethics, or bioethics in this case, have a descriptive dimension and another, normative dimension, which deal with the critical analysis of certain social practices, as well as seeking more appropriate practices for determined ends. In the case of epistemology, the normative dimension needs to find reforms in the axiological structure of the practices. In the case of ethics, what its normative dimension seeks to achieve is to establish standards and values for peaceful co-existence between groups with different moral values. 3

One criticism that has been voiced in recent years by the peripheral countries of the South is that the so-called principalist bioethics theory, which originated in the United States of America, is insufficient, or unable, adequately to analyse and confront the ethical macroproblems they experience. The process of economic globalisation, far from reducing the inequalities between rich and poor nations, has aggravated them further, creating a need for new reading matter and new proposals (4). Understanding of what we know as bioethics at the beginning of the 21st century varies from one context to another, from one nation to another and even between different scholars on the subject in the same country. When bioethics was in its infancy in the early 1970s, this discipline was seen as a new way of knowing and facing the world and life, based on ethics. It incorporated broad concepts in its interpretation of “quality of human life”, including, along with strictly biomedical issues, topics such as respect for the environment and the ecosystem itself as a whole (2,3).

Adopted by the Kennedy Institute in the United States of America (USA), by 1971 bioethics had already had its original Potterian concept reduced to the biomedical field (8), and it was in this guise that it was finally disseminated throughout the world from the USA: an Anglo-Saxon bioethics, with a strongly individualistic connotation which was based on the autonomy of social subjects, a category which, in turn, had as one of its operational/practical consequences the requirement of the so-called “Terms of Informed Consent” (TIC). Basically, this was the concept that finally spread bioethics internationally in the 1970s and 1980s, making it a well-known and consolidated concept all over the world in the 1990s.

Although the other principles that were disseminated initially also had their place in the new concept – including the deontological notions of beneficence and non-maleficence the truth is that, once again, the field of justice and, consequently, of the community, was left in a position of secondary importance. The over-emphasis on autonomy in US bioethics in the decades referred to resulted in the emergence of a singular and individualised view of conflict, together with a real “informed consent” industry – already incorporated horizontally 4

and unquestioningly into research with human beings and into medical and hospital treatment – as if everyone, regardless of their socio-economic status or level of education, were autonomous.

Consequently, tackling most issues in the field of bioethics was reduced to the individual sphere, giving preference to the contradictions autonomy versus autonomy and autonomy versus beneficence. For reasons of historic abuse – such as the abominable Tuskegee case and the denunciations made by Henry Beecher (9) – bioethics was created, at least initially, to defend the most vulnerable, most fragile individuals, within the framework of relations between health professionals and their patients, or between research companies or institutes and ordinary citizens. However, within a few years the new theory proved to be a double-edged sword, when universities, professional corporations and industries also started to train their professionals in the construction of TIC to meet every situation. In practice, this stood in the way of the initial, historic aims of protecting the most vulnerable, at least in countries with large numbers of the socially and economically excluded.

At the beginning of the 1990s, however, discordant voices began to be raised against the universality of the Georgetown principles from the United States themselves, (10,11), from Europe (12) and from Latin America (13,14). Even so, in spite of resistance to what could be called “attempts to universalise what are merely regional aspects”, there are authors who live outside the US hub who continue fiercely to defend the principalist line as unique and superior.

During the Fourth World Congress of Bioethics held in Tokyo, Japan, in 1998, bioethics began (again) to explore new routes, based on the official theme of the event, “Global Bioethics”. Directly influenced by Alastair Campbell (15), then president of the International Association of Bioethics (IAB), some followers of bioethics returned to the original routes delineated by Van Ressenlaer Potter who, with his 1988 works, once again became the referent for ideas (16). Towards the end of the 20th century, consequently, the discipline added new references to its epistemology and expanded its field of study and action, including in analyses on the issue of the quality of human life, matters which until 5

then it had dealt with tangentially, such as the conservation of biodiversity, the finite nature of the planet’s natural resources, the balance of the ecosystem, genetically-modified food, the issue of prioritising the use to which scarce resources are put, etc.

Until 1998, then, bioethics trod paths mainly concerned with topics and problems or conflicts that were more biomedical in nature than social and global, more individual than collective. The maximisation and over-exposure of the principle of autonomy turned the principle of justice into a mere cooperant of the principalist theory, an appendage of sorts which, although indispensible, was of lesser hierarchical importance. Individual concerns took precedence over community concerns; the “I” pushed the “we” into a secondary position. Autonomy became individuality which, in turn, is very close to individualism and, finally, use of the principle led, on many occasions, to an undesirable and unilateral egotism. The principalist theory proved itself incapable of identifying, understanding and intervening in the staggering chronic collective socio-economic and health-related disparities present on a daily basis in the majority of the world’s poor countries.

Four years later, in 2002, the IAB’s Sixth World Congress of Bioethics was held in Brasilia, Brazil. With strong support from specialists in the Latin America region, the Brazilian Bioethics Society established the official theme of the meeting as: Bioethics, Power and Injustice (17). In spite of strong opposing interests, the voice of those who were not reconciled to the clear imbalance was strengthened by this decision to practically politicise the world bioethics agenda. The debates brought to light a need for bioethics to incorporate into its area of reflection and applied action, the topical socio-political problems and regional disparities to which we have referred. Without a doubt, it was with the Tokyo and Brasilia Congresses, that things began to change.

Between 2003 and 2005, the United Nations Educational, Scientific and Cultural Organization – UNESCO – through its International Bioethics Committee, made a substantial contribution to the production of the most important document ever written for humanity with regard to bioethics and approved by acclamation by its 191 member states at a memorable General Assembly held in Paris on 19 October 2005: the Universal Declaration 6

on Bioethics and Human Rights (18). This document, consisting of 28 articles, 15 of which are devoted to the “principles”, and which had the decisive participation of the representatives and ideas from Latin America, redefined the bioethics agenda of the 21st century. In addition to the biomedical and biotechnological areas which naturally already formed part of the field of bioethics, the Declaration also included, with equal importance, the social, health-related and environmental areas. In other words, the new agenda took on the epistemological profile defended by the peripheral countries, acquiring greater political visibility in the contemporary world.

From all this, it is possible to conclude that the theory of the four principles which, until now has dominated bioethics – the presumably universal “hard core” of which has to some extent already been revised by its own proponents in the 5th edition of Principles of Biomedical Ethics (19) – in spite of its recognised practicality and usefulness for studying clinical situations and in research, is acknowledged to be inadequate for: a) the contextualised analysis of conflicts that call for the flexibility to adapt to a particular culture; b) tackling chronic or everyday bioethical macro-problems faced by a large part of the population of countries with high rates of social exclusion, such as the majority of the countries of Latin America and the Caribbean.

In spite of isolated criticism from sectors that favour the practicality of the principalist check list, its epistemological adaptation to the study of the conflicts and situations of the poor countries of the South is essential.

Some Latin American bioethicists, who have been critical in their comments, based on the situations mentioned above and ratification of the UNESCO Universal Declaration on Bioethics and Human Rights, are incorporating other categories or theoretical and practical references into bioethics, such as: human dignity, human rights, responsibility (individual and public), vulnerability, integrity, privacy, confidentiality, equality and equity, nondiscrimination and non-stigmatisation, solidarity, tolerance and others, as well as what I call the “4 Ps” for a practical bioethics, committed to the most vulnerable, to the “public good” and to environmental balance in all corners of the planet in the 21st century; 7

Prudence, with the unknown; Prevention of possible harm and iatrogenic incidents; Precaution in the indiscriminate use of new technologies; and Protection of the socially excluded and the most fragile and vulnerable.

Since its origin, in 1970, bioethics has passed through four distinct and well defined stages: 1) The foundation stage, in the 1970s; 2) The expansion and consolidation stage, in the 1980s and early 1990s; 3) the critical review stage, from the middle of the 1990s; and 4) the conceptual amplification stage, currently underway (20).

Researchers in Latin American bioethics who are committed to the region and its peoples will, then, in future follow a route leading epistemologically and conceptually to the rejection of the unquestioning and decontextualised importation of foreign ethical “packages”. Principalist bioethics, applied stricto sensu to any reality, is incapable and/or insufficient to impact positively on socially and economically “disempowered” societies. Consequently, it needs to be stressed that the seed has already been sown for the construction of new bases, to provide theoretical and practical support for a bioethics committed to the reality we are facing every day in the region, a situation which, according to Berlinger (21), ought not to prevail at this stage in the history of humanity.

Conceptual bases of bioethics – focus on Latin America The content from this point on was basically constructed at a seminar conducted in November 2004 in Montevideo, Uruguay, by the UNESCO Red Latino-Americana y del Caribe de Bioética (REDBIOÉTICA), originator of the book entitled Estatuto Epistemológico de la Bioética in its Spanish edition (22) and Bases Conceituais da Bioética – enfoque latino-americano in Portuguese (23). The ideas set out hereafter are taken, for the most part, from that work. They are tools that can be used by specialists in bioethics to support the study and interpretation of conflicts, problems or situations that call for practical and concrete solutions.

- Ethical relativism: the non-universality of the principles – Different cultures 8

provide different views of the same situation or event. Imposing the moral view of a politically stronger culture or nation on a weaker one is what is known as ethical imperialism or moral imperialism (24). The four Georgetown principles, as mentioned previously, AngloSaxon in origin, are not universal. Analysis of moral conflicts in different cultures needs, therefore, to be contextualised. Morality is not universal, but relative to each place, to each biological and socio-political-cultural context.

- Respect for moral pluralism – Contemporary western societies are secular, as a result of the separation of the State and religious institutions. The world today is a secularised world, where different people have different moral views on common issues. Pluralism means acknowledging the possibility that there might be different solutions to the same problem, with different interpretations, for the same reality or concept (25). Social subjects with different moral views can co-exist peacefully if there is tolerance and respect between them and for their different ideas.

- Bioethics as applied ethics – Practical or applied ethics emerged in the early 1960s in response to the explosion of new areas of ethical interrogation in society (26). Accelerated development in the field of science and technology with its morally disconcerting discoveries, such as the contraceptive pill, or reproductive technologies, for instance, have a direct relationship with that. It is understood as the application of ethics or morality in tackling practical issues (27). There are three significant areas in applied ethics: business ethics, environmental ethics and bioethics. -

Multi-inter-transdisciplinarity * Multidisciplinarity – This is the study of an object belonging to a single

discipline by various other disciplines at the same time. It is the sum of different disciplines dealing with the same subject matter, each with its own focus. Even so, the result is limited to one disciplinary field structure. * Interdisciplinarity – This refers to the transfer of the methods of one discipline to another. It is a number of disciplines “communicating” with one another, studying issues in depth on the basis of different views but without generating new 9

transforming knowledge. * Transdisciplinarity – Promotes the breaking down of barriers that constitute the borders of different disciplines, while at the same time facilitating exchange between them. It is more than the mere sum of disciplines: these are disciplines that “communicate” with one another, promoting new knowledge. This is an advanced and dynamic concept which is, at the same time “between”, “across” and “beyond” the disciplines.

- Complexity – The paradigm of complexity means that it is possible to have an idea of the qualities emerging from the interaction between the parties and their relationship with the whole, going beyond the classic determinist model, seeing the concepts of disorder, unpredictability, error and chaos as promoters of evolution and change; it is an attempt to reconnect content and knowledge (28,29).

- Concrete totality – This does not mean a set of facts or events, but is reality itself as a structured, dynamic and inter-related whole, on the basis of which it is possible to understand, rationally, any fact or event (type of fact or event, series of facts or events, etc.). Precisely because reality is a structured whole that is developing, creating itself and – continuously and constantly – transforming knowledge of facts (or the totality of facts of reality) it constitutes the complete and true view of that reality, which is unique, but at the same time, multiple and contradictory (30,31).

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The structure of bioethical discourse: * Communication and language – The term “communication” designates the

specific character of human relations which involve reciprocal participation or comprehension (25); it indicates a set of specific modes that human co-existence can assume. “Language”, in turn, consists of the specific vocabulary used in a science, art, discipline or referential whole that serves to express ideas, feelings, behaviour.

The two terms are

essential, for example, in the construction of Terms of Informed Consent.

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* Reasoning – Reasoning is the act or effect of putting forward arguments. The argument, in turn, is the means by which attempts are made to prove or refute a theory, convincing another of its truth or falsity. An argument is any reason, proof, demonstration, indication or cause which is capable of gaining consent and leading to persuasion or conviction; reason gives a doubtful matter credibility. Reasoning is important in drawing up technical reports and decisions in clinical bioethics or in scientific research projects.

* Dialogue – This is the exchange or discussion of ideas, opinions and

concepts, with a view to finding solutions to problems, or achieving agreement or harmony. Dialogue, through language, is directed at reciprocal understanding between the speakers. It is the exchange of ideas, opinions and information between the subjects (32). For dialogue to exist, a minimum of consensus is essential (33). It is useful in cases of imbalance in discussions between health professionals and patients or in cases where there is a conflict of interests.

* Coherence – This means order, connection or harmony within a system or set of knowledge, expressing conformity of propositions to a rule of criteria. Reasoning is deemed to be coherent as long as the parts are related to one another, especially when such relationship conforms to a standard or model. It is common to take the view that things which are coherent are compatible (25). Bioethical discourse and practice must be coherent.

* Consensus – This refers to the existence of an agreement between the members of a particular social unit with regard to principles, values, standards or objectives desired by a community, and on the means of achieving them (7). There are different degrees of consensus, with complete consensus being very improbable. It plays an important role in the development of public policy, for example in the definition of health-related priorities when faced with an insufficient budget. The different types of ethics and bioethics committees or councils often have to build consensus on the basis of differences. Communication, language, reasoning, dialogue and coherence are all important theoretical and practical tools in the search for consensus.

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* Rationality – Rationalism is recognition of the authority of reason. Reason, in turn, is the mind’s ability to think consistently (34). Rationalism admits a type of truth that comes from the direct intuition of the intellect, which is beyond the reach of sensitive perception and is opposed to empiricism. Rationality plays a decisive role in discussions, ensuring that they are not sterile, and in the search for ethical consensus.

Final Comments

It is appropriate to recall that, prior to the transformations and faster pace experienced in the field of science and technology in the international context, the link between ethical aspects and the subjects referred to ceased to be thought of as something supra-structural, and called for direct participation in discussions, both in clinical bioethics and in the public construction of working proposals with the future welfare of individuals and communities in mind. At this beginning of the 21st century, the issue of ethics has acquired a public identity. It can no longer be considered to be solely a problem of private or individual conscience to be resolved in the sphere of individual autonomy and in an exclusively intimate forum. These days, it is growing in importance, not only as regards the analysis of health-related responsibilities and a more precise historical and social interpretation of health issues, but also in the determination of forms of proposed intervention, respecting biodiversity and the conservation of finite natural resources and, above all, in the State’s responsibility to its citizens, and in particular the poorest and most needy.

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