© Springer International Publishing Switzerland 2016
Alireza Bagheri, Jonathan D. Moreno and Stefano Semplici (eds.)Global Bioethics: The Impact of the UNESCO International Bioethics CommitteeAdvancing Global Bioethics510.1007/978-3-319-22650-7_66. Global Bioethics as Social Bioethics
(1)
Social Ethics, University of Rome “Tor Vergata”, Rome, Italy
Abstract
According to Article 1 of the Universal Declaration on Bioethics and Human Rights of 2005, bioethics “addresses ethical issues related to medicine, life sciences and associated technologies as applied to human beings, taking into account their social, legal and environmental dimensions”. This definition broadens the scope of the discipline, far beyond the content of the traditional and more controversial issues concerning the beginning and the end of life or the limits of research. The right of every individual to enjoy the highest attainable standard of health is acknowledged – among others – as one of the principles that global bioethics must comply with, including all the determinants of human development and well-being. Therefore, social responsibility and respect for persons and groups living in conditions of special vulnerability, knowledge and benefit sharing, and sustainable development are key in the work of the UNESCO International Bioethics Committee (IBC). The commitment to improving the standard of health, dignity and quality of life for every human being is a matter of society as well as a matter of science.
6.1 Introduction
The definition of bioethics proposed by W.T. Reich in the Introduction to the second edition of the Encyclopedia of Bioethics (1995) seems to grasp both the complexity and the breadth of the new discipline: bioethics is “the systematic study of the moral dimensions – including moral vision, decisions, conduct, and policies – of the life sciences and health care”. This study – the definition continues to explain – is further characterized by “employing a variety of ethical methodologies in an interdisciplinary setting”. We have therefore a double scope to explore (life sciences and health care) – together with a commitment to focus on the moral dimensions implied therein – and the methodological direction of an interdisciplinary approach. If we compare this very standard definition with the one provided in Article 1 of the Universal Declaration on Bioethics and Human Rights of 2005, it is easy to point out a relevant difference. Bioethics, so the text reads, “addresses ethical issues related to medicine, life sciences and associated technologies as applied to human beings, taking into account their social, legal and environmental dimensions”. As applied to human beings. This sounds quite obvious, in a document whose aim is exactly to link bioethics and human rights. The double scope is the same, although the order of the terms, not coincidentally, is reversed. The idea that bioethics addresses moral issues remains unchallenged: bioethicists are still called on to consider “human conduct”, to quote the definition already proposed in 1978 in the first edition of the Encyclopedia. At the same time, however, the Declaration focuses on the consequences of scientific developments and their technological applications on human beings. Even though Article 17 calls for protection of the environment, the biosphere and biodiversity, building on the awareness of our interconnection with “other forms of life”, it is exactly the destiny of human beings which appears to be the pivotal content of the ethical responsibility which is the cornerstone of this bioethics.
This is why the UNESCO definition can be and has indeed been contended as a narrow one. It is also true, however, that it broadens the scope of bioethics in a decisive way, by deepening the reference to health and health care as well as to the several determinants of the context in which the application of science and new technologies takes place. The right of every individual to enjoy the highest attainable standard of health, already acknowledged in the Constitution itself of the World Health Organization , is included among the principles with which universal bioethics must comply. As a consequence, access to quality health care – together with access to adequate nutrition and water, improvement of living conditions, elimination of the marginalization and exclusion of persons on any basis, and reduction of poverty and illiteracy – ought necessarily to be considered as one of the main ethical and political challenges entailed in the progress of science and technology. The task goes far beyond the content of the traditional and more controversial issues concerning the beginning and the end of life or the limits of research. Inasmuch as bioethics is about health and health care, it is at the very crossroads of all the determinants of human development and well-being. This social dimension of bioethics is explicitly highlighted in Article 14 of the Declaration. The very history of this article is evidence of its novelty and importance (Martinez Palomo 2009). It was not included in the first drafts of the document and was added to point out the necessity to go beyond the limits of purely medical ethics in order to “place bioethics and scientific progress within the context of reflection open to the political and social world” (UNESCO 2010, p. 9). It is all the more significant to observe that this principle of social responsibility and health was the second one, after the principle of consent, to be further investigated by the International Bioethics Committee , which published a Report on the topic.
The acknowledgment of everyone’s right to enjoy the highest attainable standard of health has been long since an unquestionable premise for many declarations and other texts of international importance, as I have just underscored. The same applies to the interconnectedness of health with the other indispensable determinants of human development. Article 25 of the Declaration of 1948, a building block for – among others – Article 12 of the International Covenant on Economic, Social and Cultural Rights of 1966, had already made clear not only that everyone has the right to a “standard of living adequate for the health and well-being of himself and of his family”, but also that, precisely in order to flesh out this fundamental right, it is necessary to provide “food, clothing, housing and medical care and necessary social services”. In the first chapter of the Human Development Report 1990, it was affirmed that the choice of life expectancy as one of the indexes was motivated exactly by its functioning as a “proxy measure for several other important variables”, such as “adequate nutrition, good health and education” (UNDP 1990, p. 11), whose overlap was thus implicitly reaffirmed. And many other examples may follow. In the Report titled Closing the gap in a generation and published in 2008 by the Commission established by WHO in 2005, the same year of the adoption of the UNESCO Declaration, a “holistic view” was strongly recommended, based on the awareness that, “the poor health of the poor, the social gradient in health within countries, and the marked health inequities between countries are caused by the unequal distribution of power, income, goods, and services, globally and nationally, the consequent unfairness in the immediate, visible circumstances of people’s lives – their access to health care, schools, and education, their conditions of work and leisure, their homes, communities, towns, or cities – and their chances of leading a flourishing life” (WHO 2008, p. 1). The Better Life Initiative, launched in 2011 by the Organization for Economic Cooperation and Development with the aim of helping governments design better policies for better lives for their citizens, points out 11 dimensions which are identified as essentials to well-being. It goes without saying that health is one of them, together with housing, income, jobs, community, education, environment, civic engagement, life satisfaction, safety, and work-life balance (http://www.oecdbetterlifeindex.org/).
6.2 Social Responsibility and Social Vulnerability
The novelty in Article 14 of the Declaration of 2005 is exactly the use of the concept of social responsibility: “The promotion of health and social development for their people is a central purpose of governments that all sectors of society share”. All sectors of society. The action of governments remains the cornerstone of the comprehensive strategy required to address the blatant injustice that so many people are still prevented from enjoying not the highest, but even a reasonable standard of health. What is affirmed is that an efficient, avoidable and affordable system of health care would be insufficient to perform the task, if the social determinants of health are not also targeted. In addition to this more obvious observation, it is underscored that social actors must play a role as important as the role of governments: individuals, groups and associations with different origins and missions, media, enterprises.
This observation becomes a key for the social bioethics indicated by UNESCO and especially by the IBC in a double sense. An illustrative example of the first one is provided exactly by the reference to the economic and industrial activity. As it is well known, this is the field in which the notion of social responsibility was first introduced, with the aim of reshaping the mission of management and taking into account the broad pervasiveness of the effects of its decisions as well as of the processes of production and distribution of goods and services. According to this new approach, a shift is required from the responsibility of just maximizing profit for the stock holders to the responsibility of respecting the rights and interests of all other stake holders affected by the enterprise’s activity: customers, suppliers, employees, but also people living close to a plant, environmentalists, and other special interest groups. This is the most debated and the most successful aspect of the so-called corporate social responsibility: there are many negative ‘externalities’ produced not only by ‘heavy’ industry, and the actors of today’s global market ought to include them in their plans and strategies.
Industry is one of the “special areas of focus” considered in the Report of the IBC on social responsibility and health and the potential ‘dark side’ of its activity is clearly indicated: “Work conditions can be harmful for people. Pollution can damage the environment and jeopardize the well-being of the population. Marketing strategies are often used to boost unhealthy behavior related to food and lifestyles. Research itself may serve profit-oriented activities more than interests and needs of individuals and society, exposing experts to conflict of interests that are always very dangerous because of their influence in decision-making processes. Globalization has made these risks more evident and has made the traditional institutional means of control less effective” (UNESCO 2010, pp. 31–32). The next step, considering the many social determinants and therefore the many social actors whose choices and actions rebound on people’s health, is to necessarily include all of them in this call to share old and new responsibilities. It is sufficient, once again, to think of the role of education, which provides knowledge and awareness to better manage one’s own life and to not run avoidable risks, as well as to claim the rights that are otherwise likely to remain just an object of wishful thinking, if not lip service. It is not only about educators and scientists. The last word of the Report is for the media, which are “in a position to be very helpful in sensitizing the population to health challenges and in explaining widely current questions and their societal dimensions”, provided that they avoid their own temptations, such as seeking notoriety by triggering sensationalism, alarmism, or “even panic” (UNESCO 2010, p. 42).
The principle of externalities is one of the six principles enumerated by R.E. Freeman, the father of the stakeholder approach, as the ground rules of his doctrine of fair contracts. In this perspective, it is defined as follows: “If a contract between A and B imposes a cost on C, then C has the option to become a party to the contract, and the terms are renegotiated”. The principle of governance is another one of these ground rules: “The procedure for changing the rules of the game must be agreed upon by unanimous consent”. Other principles (entry and exit, contracting costs, agency) are also conceived as elements of a contractual theory, including the last one, which is the principle of limited immortality: although stakeholders are necessarily uncertain about the future, “the corporation shall be managed as if it can continue to serve the interests of stakeholders through time” (Freeman 1994, p. 417). This clarification helps focus on the second, decisive point to make. Of course, social responsibility calls on everyone to take into due account the consequences of their actions. However, this is not to think as if the task to perform were simply that of grounding the fair conditions of symmetry in a ‘contractual’ relationship. We could be even less satisfied by tracing back the concept to the juridical framework of the imputability for the damage caused to others.
The responsibility we are talking about implies unmistakably some positive obligations: Article 14 calls on all sectors of society to promote health and social development and not just to refrain from doing something. It means that all sectors of society are urged to boost the positive externalities of their activity and consider them as a goal to include in their plans of action. It means, at the same time, that governance is key in terms of empowerment of every single human being. In the language of politics and institutions, such a sharing of responsibilities entails a turn towards what we could define, following R.A. Dahl’s successful intuition on the outcome of modern democracy (Dahl 1971), a polyarchic approach to the duty to respect, protect and fulfil fundamental human rights. In the language of philosophy, it is unavoidable to refer to – among others – the concept of responsibility established by P. Ricoeur, who builds on Jonas’ work to propose a concept of responsibility enshrined in the experience of human vulnerability: we are responsible, even before our deeds, for the vulnerability of others. Therefore we ought to take care of them (Ricoeur 2004, Chap. II.4).
Not coincidentally, the respect for human vulnerability and personal integrity is also a principle stated in the Universal Declaration on Bioethics and Human Rights , and it has been addressed in the Report finalized by the IBC in 2011 (immediately after the Report on social responsibility for health) and published in 2013. Humankind as such is vulnerable, and we all may happen to lack at some point the ability and/or the resources which are necessary to prevent ‘wounds’ to our physical or mental integrity. In order to protect everyone’s health, governments and all sectors and actors of society are called on not only to reduce the risks engendered by this anthropological vulnerability, which is by itself a powerful driver of solidarity, but also to effectively address those conditions of special vulnerability which create many faults of inequality that obstruct the enjoyment of a fundamental human right. Two categories are highlighted. On the one hand, there are individual conditions linked to temporary or permanent disabilities, diseases and limitations imposed by the stages of human life. On the other hand, there are those “social, political and environmental determinants” which are likely to expose people to an increased collective risk of vulnerability: “Many individuals, groups and population nowadays become especially vulnerable because of factors created and implemented by other human beings […] Social vulnerability plays a role not only in biomedical research but also in the healthcare setting and in the development, implementation and application of emerging technologies in biomedical sciences and is a fact of life for a considerable portion of world’s population”. Poverty and inequalities “in income, social conditions, education and access to information”, are mentioned as the first examples of such determinants of special vulnerability. They have an impact even on the capacity to prevent or at least ameliorate the effects of natural disasters: living in a country free from the risk of heavy earthquakes, for instance, is by all evidence not the same as living in those countries that have been devastated by them throughout their history. At the same time, however, living in a country where the most advanced technologies to cope with this risk are available, as well as the resources which make them affordable and the political determination to turn this knowledge into practice, is not the same as living in a country which lacks some of these elements, if not all of them (UNESCO 2013, pp. 14–15). Knowledge, wealth, governance. Once again, their improvement and fair distribution come out to be the pillars of new bioethical responsibilities, inasmuch as they are the fundamental determinants of human development. They overlap each other. Suffice it to mention some of the illustrative examples that are proposed in this Report of the IBC and related to the three specific domains pointed out in Article 8 of the Declaration: the doctor-patient relationship in the clinical setting, the researcher-subject relationship in human subject research, and the development and application of emerging technologies in the biomedical sciences. Neglected tropical diseases are parasitic and bacterial diseases that affect some of the most impoverished populations of the world: pharmaceutical companies show little interest in their treatment because of the lack of return on investment. Poverty is always a condition which jeopardizes the access to health care on equal footing as well as the real freedom to volunteer for research. The lack of regulation offers too often the possibility for vested interests and practices of exploitation to step into the breach. This is why we cannot hope to comply with our old and new bioethical obligations by simply focusing on one single determinant. An all-encompassing approach to human development is required and the issue of health equity is no exception to the rule. The IBC reaffirms that “we cannot be satisfied with the simple exercise of restraint and forbearance in pursuing our own objectives when this might threaten the autonomy and dignity of others. We are compelled to act in a positive way to help other people to cope with the natural or social determinants of vulnerability […] There is no doubt that empowerment of people against vulnerability entails more resources available for everyone, free and safe living conditions, access to quality health care as condition to actually guarantee to every human being ‘the enjoyment of the highest attainable standard of health’” (Art. 14 of the Declaration). In this sense, the respect for human vulnerability and personal integrity is at the crossroads of unavoidable political responsibilities (UNESCO 2013, p. 14).

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