Bioethics, health, and inequality

Abstract

Bioethics, a philosophical discipline that aims to connect science, life, and morality, has been focused almost exclusively on recent developments in biomedical sciences—on extreme cases that were, up to now, infeasible and sometimes almost inconceivable. This frontier bioethics concerns, for instance, organ transplantation, genetic therapy, cloning, use of stem cells, preimplantation diagnosis, and transgenic technologies, which lead to unheard-of events and new moral categories. I uphold the existence of another area of bioethics, less remote from the experience of ordinary people. This type could be called everyday bioethics 1 because it concerns the daily persistent conditions of most of the world's population, often difficult and sometimes tragic. If we consider common behaviours and knowledge, even among people who ignore the latest progresses of science, we can state that moral reflections on birth, gender relations, justice and autonomy, disease and health care, the interdependence of species, and death have a very long history—as long as that of humanity. These reflections guide today, wittingly or unwittingly, the decisions of all individuals, social groups, and communities, because “it must be shown that all men are ‘philosophers’, by defining the limits and characteristics of the ‘spontaneous philosophy’ which is proper to anybody”. 2 Both frontier and everyday areas of bioethics deserve equal attention and are closely inter-related. Their intersection could give rise to stimulating philosophical debates, to a better understanding of moral principles, and to coordinated actions. I would like to point out the practical and moral interests of these connections through three examples. First, the technique of preimplantation genetic diagnosis (PGD), which was introduced after in-vitro fertilisation (IVF), allows recognition and elimination of an embryo with a genetic disorder or malformation and permits selection of sex. The International Bioethics Committee (IBC) of UNESCO (United Nations Educational, Scientific, and Cultural Organization) recommended that “PGD be limited to medical indications. Therefore sex selection for non-medical reasons is considered to be unethical.” 3 Nevertheless PGD is also practised, and sometimes morally and legally justified, in developed countries. The debate in frontier bioethics concerns mainly the right of parents to decide the characteristics of their children. Sex selection, however, is widely put into practice not only through elaborate technologies but also in daily life through infanticide, discrimination in nutrition and health care, and other barbarous methods. In 1992, Amartya Sen 4 showed the existence—on the basis of changes in the ratio of women to men in the total population of Asia and Africa—of hundreds of millions of missing women caused by similar actions. Worldwide indignation and appropriate cultural and legal measures have been taken in several countries to reduce this situation. Did anything change? Sen revisited the data in 2003, 5 and reported that the reduction in female over-mortality has been counterbalanced by the spread of sex-selective abortion against the female fetus, and as a result the number of missing women is now greater. Embryos, fetuses, or babies can be selected by many methods from different cultures, which manifest a unique and crude tendency—this selection is a sharp and visible aspect of gender inequality. In developed countries, acceptance of sex selection through biotechnological methods can hinder any effort to reduce any kind of sex selection in any part of the world. Second, the question of whether the human body be bought and sold has a history as long as the existence of slavery, and has been a very embarrassing problem for philosophers, from Aristotle to Locke, and for theologians. The antislavery movements finally imposed its abolition—one of the most impressive cases of a turn in history by effect of moral principles. It led to the Geneva Convention (Sept 26, 1926), which called on all nations to pursue the suppression of slavery in all its forms, as soon as possible. But in many places, old and new forms of slavery still exist, including bonded labour, in which a worker or labourer is bound to a company or a landlord for life by inextinguishable debts. A type of such bonded slavery existed in the villages of Sultanpur Mela, Kot Momin, and Mateela in Pakistan. In this case, 6 400 peasants—almost one in every family—sold one of their kidneys for less than US$2000. Specialised hospitals transplanted their organs into rich patients coming from different cities and other countries. The peasants were obliged to become rewarded donors for the hope or the illusion to free themselves from debts. In this way, slavery met the biotechnological market of spare parts of human bodies. 7 Such rewarded donation is the dark side of the enormous advantages coming from the possibility to transfer, from a person to another, organs, corneas, tissues, cells, gametes, stem cells, and other commodities. The moral question “Is there a freedom to sell his own body?” was answered, to a certain extent, long ago by Immanuel Kant (man cannot be at the same time a person and an object; therefore we cannot sell any part of our body) and by John Stuart Mill (man has all the liberties, except that of choosing to be a slave). Now the debate has been reopened. The June, 2003, edition of the Journal of Medical Ethics 8 was dedicated to supply of organs for transplantation, and particularly to the moral legitimisation of the biotechnological market. In my opinion, the question would be most clear if raised the other way round: has a person the right to buy (or to rent) parts of the body of another human being? Robert Evans, a UK Labour member of the European Parliament, answered no, and proposed to declare illegal and punishable such practice, according to which wealthy people “are able to exploit desperate people with no fear of penalties”. 9 If the answer to this question is yes, the risk is to legitimise a society in which everything could be bought; ourselves, too, who would be regarded as the final commodity. Third, prevailing opinion on human cloning is mainly in favour of the cloning of cells and tissues for therapeutic reasons but is against reproductive cloning because this technique denies the casual combination of genes, restricts individual freedom, and implies genetic predetermination. The few people who are in favour of reproductive cloning affirm that human beings are almost always largely predetermined insofar that they are born in a particular country, time, class, and family. If a person's destiny is to become social, cultural, and moral clones, why should genetic cloning not be permitted? Perhaps human liberty and self-determination should prevail over all limits and obstacles, either due to social and gender injustice or manipulation of minds; use of science in favour of genetic arrogance would deny or discourage the daily efforts of any person to build autonomously his or her own future. Can we develop universal principles in bioethics? These and similar cases could stimulate the debate and (I hope) growth, by consensus, of common universal values in bioethics and of moral norms, accompanied (sometimes) by legal international regulations. This action becomes necessary for two additional reasons. First, many scientific practices have extended beyond national borders, such as the legal (and sometimes illegal) importation and exportation of stem cells, tissue collections, organs, DNA samples, and genetic data. Moreover, human experiments are done in several countries, and we should avoid putting unnecessary burdens on poor people and communities or creating new forms of exploitation. The bioethical issues that are generated need fair solutions, in accordance with the plurality of values and with the common interests of the world community. Second, positive actions for health are essential on a world and local scale. The idea that the combination of scientific progress and free market would spontaneously extend its benefits worldwide, which was dominant in the past two decades, has failed, and a paradoxical situation about science has arisen. New, impressive advances in biomedical knowledge, which at some times in the past were largely accessible—eg, in the 1950s and 1960s, use of antibiotics against microbial diseases and vaccines against smallpox and poliomyelitis—are now becoming more and more selective. Many individuals affected by AIDS or other serious infectious diseases can benefit from new drugs and survive; however, most people cannot afford to pay for the drugs and could die. In Africa and other areas of the world, AIDS could lead to catastrophic effects similar to those the Black Death caused in Europe in 1347–51. According to Roy Porter, “plague killed a quarter of Europe's population—and far more in some towns; the largest number of fatalities caused by a single epidemic disaster in the history of Europe. This provoked a lasting demographic crisis.” 10 The differences are in the progress of the AIDS pandemic, which is slower than that of the Black Death but equally cruel, and in the fact that now we know the causes and possible remedies for AIDS, malaria, tuberculosis, and other scourges. The eradication of smallpox, the substantial reduction of childhood diarrhoeal deaths, and the elimination of poliomyelitis in 175 countries show that many goals have already been achieved through knowledge and common action. Unfortunately, the undesired but foreseeable result of medical progress tends to increase inequalities, because it is oriented by vested interests and directed towards the rich instead of general goals. Annette Flanagin and Margaret A Winker wrote: “The contemporary era of globalization, which was anticipated to capitalize on advances in technology, science, communication, and cross-national interdependence, has been accompanied by gaps … and wide disparities in societal resources … Moreover, only a small fraction of funds for biomedical research is dedicated to research that affects most the poor or supports research conducted by resource-poor scientists and for the benefit of resource-poor populations.” 11 The 10/90 gap refers to the fact that only 10% of the US$70 billion spent on health research and development by the private and public sector is used for research into 90% of the world's health problems. A similar (or greater) imbalance exists for expenditures on prevention and health care. Benefit-sharing and equal access to advances in biomedical science are now urgent and universal issues. This moral change in values and priorities should guide public policies on health at all levels. If we think of universal principles in bioethics, the fundamental ones should probably be equal dignity of every individual and equity of life, disease, and death. A step towards universal principles—on a European level—is the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, 12 adopted by the Council of Europe in Oviedo on April 4, 1997, and opened to the signature of other nations. Two fundamental articles state that the convention “shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedom” (article 1), and that “the interests and welfare of human beings shall prevail over the sole interest of society or science” (article 2). The convention includes articles on the rights of the patient, on equitable access to health care, on respect for private life, on non-discrimination on genetic grounds, on transplants, and on prohibition of financial gains “from the human body and his parts as such” (article 21). At its 31st session in 2001, the general council of UNESCO—after an explicit invitation of the Round Table of Ministers of Science—invited its Director General to submit the technical and legal studies undertaken regarding the possibility of elaborating universal norms on bioethics. During 2002 and 2003, the IBC of UNESCO worked on a feasibility study, and concluded in June, 2003, with a report on the possibility of elaborating a universal instrument on bioethics, 13 a declaration that is less binding than a convention. The 32nd session of UNESCO in October, 2003, judged setting of universal standards in this area to be imperative and desirable, and invited the Director General “to continue preparatory work on a declaration, and to submit a draft declaration at its 33rd session in 2005, involving from the very beginning States, the United Nations and the other specialized agencies of the UN system, other inter-governmental and non-governmental organizations and appropriate national bodies and specialists”. 13 I know by personal experience in the IBC (in which I was a rapporteur) that to proceed from a feasibility study to a universal declaration on bioethics is almost impossible, but trying is worthwhile. The process of elaboration can be itself a contribution to the ethics debate, to knowledge and participation, as long as the existence of many different ethics, and bioethics in particular, is considered—not as an obstacle—but as an expression of richness and freedom. Since the text of the preliminary report of the IBC is now publicly accessible, I will not discuss it in detail. I would only underline that, after the preliminary remarks, its first substantial section deals with health and health care (points 16, 17, and 18). It begins with this paragraph: “Health has a dual moral value: it is essential for the quality of life and life itself, and is instrumental as a precondition for freedom. When disease prevails, the destiny of a person (and even of a nation) is left to external factors and powers and may enter into an irreversible vicious circle of regression. The inequality between the rich and the poor—at the level of individuals, communities and nations—is becoming increasingly deeply felt in the area of health and healthcare, thereby contributing to the desperation and injustice that prevail and continue to increase in other health-related fields such as food, income and education.” The main difficulty in practising moral principles concerning human dignity and equity in health is that in the past 15 years a singular ethics (and a singular policy) prevailed in the world, which resulted in overturning the health paradigms that had successfully guided public health and health services for one century. The principle that health is a value and an objective of economic development has been replaced by the opposite idea: that systems of universal care represent one of the main obstacles to economic growth. The leadership of national health policies has been transferred from health ministers to economics ministers, and internationally (particularly in developing and under-developed countries) was influenced more by the International Monetary Fund (IMF), the World Bank, and the World Trade Organization (WTO) than by WHO. Even when the negative results of their policies in relation to equity became clear, and the action of WHO (whose president at the time was Gro Harlem Brundtland) succeeded in bringing health back on the world political agenda, the model of the commission appointed by WHO on macroeconomic and health continues to be that of the influential 1993 Report of the World Bank, Investing in health. 14 The model does not include any critical analysis “of currently dominant macroeconomic policies or of the structure and mechanisms that entrench developing countries disadvantage, ill health, and deteriorating services”. 15 In this framework, the debate refers mainly to health-care systems, putting aside the concepts of healthy societies and systems. The idea of the priority of primary health care and of the prevention accessible to everybody has been supplanted by high technologies, even in countries where the resources are minimal. Discussions on resources for health have been restricted to monetary aspects, ignoring the many possibilities of human resources, of changes in environment and workplace, and of improvements in nutrition and education. The need to identify priorities and to distribute fairly the resources for health care is replaced by the idea of rationing them: not through priorities and universal inclusion, but through selective exclusion. The analysis of diseases' causes has been concentrated mainly on individual factors, such as genes and behaviours, whereas the role of social factors, so important for disadvantaged people, has been neglected. The role of social factors is sometimes even concealed. One example is in the World Health Report (2002). 16 Its introduction underlines “the importance of communicating risks clearly and openly to the public”. The report identifies the ten leading risks to health in developed countries (tobacco, blood pressure, etc) and in developing countries: where, as I read with surprise, the main risk is being underweight. Clear and open communication seems to consist of substituting the main causes of risk and of death—hunger, poverty, and lack of education—with measurements of relations between grams and centimetres. In the meantime, the number of people seriously affected by hunger increased by 25 million from 2002 to 2003, and the UN openly admits that the targets established in the solemn Millennium Declaration in 2000 cannot be reached unless alternative policies are followed. Another example comes from the death, during the summer of 2003, of more than 15 000 elderly men and women in France, many of them poor or socially marginalised; of more than 5000 in Germany and Italy; and of others in many other European countries. It is true that in August the temperature in these countries was unusually high, but this risk had been widely described in epidemiological research, and preventive measures for elderly people in such conditions are available in almost all gerontology textbooks. The almost unanimous comment of the media was that they were killed by the heat. Commentators forgot the isolation, loneliness, lack of attention by many family doctors and local health services, absence of any warning or information being broadcast on television (which is often the only communication between non-self-sufficient elderly individuals and the rest of the community), and insufficient funding for active assistance and care at home. The ministers of health were surprised by the events, 17 and local health authorities tried to underestimate and even to conceal numbers (almost like the epidemic of severe acute respiratory syndrome in China). Very few raised two general questions: what else can we expect for world health from potential climate change, and what should we do about present and future risks? At the end of the 1990s, new political and moral trends began to emerge in the world, and new emphasis was given to health and equity in health. These trends became very influential culturally, although they were politically contradicted by the orientations of the dominant powers. Health was reintroduced to the international political agenda. In many countries, researchers have shown a growing interest in health equity, inspired either by their moral and scientific sensitivity, or by evidence. The main efforts were inspired by the attempt to integrate altruism and self-interest, to reconsider health as an indivisible good, and by the refusal of simple charitable transfers of benefits among countries or groups. This is an old idea, now defined as compassionate conservatism, which may include the virtue of ethics but has two faults: (1) those who are helped are placed in a compromising, dependent position, treated as victims not agents; and (2) societal rules and structures that generate such social consequences are not addressed. Burden of disease attributable to 10 selected leading risk factors, by level of development and type of affected outcome Reproduced from The World Health Report, 2002.Reducing risks, promoting healthy life. The World Trade Organisation headquarters, Geneva, Switzerland Public opinion, nevertheless, became more critical towards inequities in health, probably for two reasons. One is that the inequity in health, which often means life or death, raises higher indignation than other inequities concerning income or material goods. The other is an increased knowledge of reality through public inquiries, books, 18 medical journals, and campaigns. A few years ago, Amartya Sen, closing in Dhaka the Bangladesh session of the Global Equity in Health Initiative in 1998, said: “Information concerning discrimination, torture, poverty, illness, and abandonment helps coalesce the forces opposing these events by extending the opposition to the general public. This is because the people have the capacity and willingness of reacting to other people's difficulties.” Evidence confirms the willingness of people to help others. Millions, mainly young people, are working in voluntary services at home or abroad. Often, they combine in their activities two aspects that in the past have been separated and even conflicting: to struggle for collective interests, and at the same time to work daily to help individuals. On the political and cultural scene, the role of civil society and of community organisations has increased almost everywhere. A new generation has emerged that criticises the effects of one-sided globalisation on environment, health, justice, and relations between science and society, which underlines that a better world is possible and demands peace. There are some analogies with the youth movements of the late 1960s, but also three differences that can make this new movement more lasting and more effective: their extension beyond schools and far beyond the USA and western Europe; their will to integrate criticism with proposals; and their growing influence on national policies and on international agencies, as we can see from two examples. One example is the victory obtained against the bill of indictment, requested by the multinational pharmaceutical industries to the South African Court against Nelson Mandela and his government, for the crime of producing and importing antiretrovirals by ignoring or violating patents. Mandela made the decision to ignore the patent to make therapies accessible for the poor population, in a country where one in nine people is HIV-positive. After global criticism from governments, non-governmental organisations, HIV/AIDS specialists, and a globalised movement mainly organised through the internet, the pharmaceutical companies decided not to pursue the case. After a bitter struggle between the companies and WHO, new rules were adopted. It is now possible to suspend or limit the royalties for “intellectual property” in case of widespread epidemics: a partial victory in what could be called, perhaps improperly, conflict between patents and patients. Later, in October, 2003, the South African Competition Commission concluded that the companies “had overcharged for the drugs and had limited their licensing to competitors to try to suppress competition”; 19 and finally, in December of that year, GlaxoSmithKline and Boehringer Ingelheim, while still rejecting the accusation, agreed to reduce the price for therapy by as much as 90%. A door has been opened for new international rules on everyday bioethics. The second example is the WTO meeting in Cancun, Mexico, Sept 9–14, 2003, where no agreement was reached on trade in agricultural and industrial products, and the attempt to push decisions on fundamental issues, such as the privatisation of water resources and of health and educational services, completely failed. The consequences of this failure may be contradictory, but surely a new factor emerged: the formation of an alliance between more than 20 developing countries who represent more than half of the world's population, and antiglobalisation movements. Developing countries have been deeply divided in the past 20–30 years, and have had almost no voice in the international arena. Cultural and political antiglobalisation groups had already gained publicity in Seattle 4 years ago, and now had common goals with many governments. So far, the main result is the defeat of the proposal to extend rules governing the trade of commodities to the services for persons, such as health and education, and to natural resources. The argument has been that such services affect human rights, are essential for human life and growth, and that nations should decide how to guarantee them to all citizens. The two cases show how far other international agencies such as the WTO, the IMF, and the World Bank, are involved in decisions about people's health, which often is not considered as a value but a variable and uncomfortable element of the economic system. As far as ethics is concerned, the difference is that WHO does have a moral obligation towards people's health, whereas the WTO, the IMF, and the World Bank do not. During and after the recent change in the WHO leadership, there was much discussion about its future, such as the stimulating debate in The Lancet. 20 At the same time, the connections between health and human security became more evident. The UN appointed an ad hoc commission that stated: “In addition to the persistent problems and vulnerabilities with which the world has long been familiar, there is a new wave of dramatic crises at the turn of the millennium related to terrorist attacks, ethnic violence, epidemics and sudden economic downturns. There is also a fear that existing institutions and policies are not able to cope with weakening multilateralism, failing respect for human rights, eroding commitments to eradicate poverty and deprivation, outdated sectarian perspectives in educations systems and the tendency to neglect global responsibilities in an increasingly interrelated world. At the same time, the opportunities for working towards removing insecurity across the world are also larger than ever before.” 21 Two deep contradictions are now arising. One is the move back to the idea of security, which was historically intended (with mixed intentions and results) to counter the threat of aggression across borders or violence against people. In the 20th century this concept was deepened and expanded 22 through the experience of the welfare state and through the emergence of new personal and collective rights. The questions are now: what security, and for whom? Not only against the threat of attacks and crimes against nations and persons, but also for individuals and their dignity; for human welfare, health, and nutrition; for water and clean air; for the biosphere; and for the interests of future generations. The other contradiction is the policy of governments like the USA that, in the struggle against the threat ofinternational terrorism, choose to use their military and repressive power, without addressing the social, cultural, and political causes that cannot ever justify but might explain the growth of terrorism. From a practical point of view, the results of this policy are dubious at the very least. From an ethical point of view, it restricts the range of individuals who could contribute to society; it might demobilise popular, intellectual, and political energies; it introduces a rigid separation between those who are considered good and those who are branded evil; and it weakens the duties of public authorities and international institutions to face other individual and collective needs. The future of health, health policies, and health equity is strictly connected to the resolution of these contradictions.