(12) Epidemiology
ZIKA VIRUS: THE MAKING OF AN EPIDEMIC
Food, Justice and Health Equity: Culture is Health- Sovereignty and Food Systems
Health and social justice - WHO
Justice, Inequality, and Health
Justice and health
Whatever the type of study, the ethics committee's task focuses on guaranteeing the protection of the subjects included in the investigation. The committees rarely discuss to what extent a study responds to the health needs of the country where it is conducted, an issue particularly relevant for developing countries that implies but goes beyond ethics into the politics of research and health. Political choices in these domains must first of all confront the dramatic inequalities existing between developed and developing countries. By far the largest proportion of biomedical research funds is spent on diseases affecting the minority of the world population (less than one-fifth) living in the developed world.
According to some estimates, 10% of the total world burden of diseases attracts 90% of the biomedical research funds (the so-called `90/10 divide'). Similarly, almost 90% of the money destined for health care is spent in developed countries and only 10% in the developing countries, where the great majority of humankind lives. Although they are not the only determinants of health, these huge inequalities in investment and current expenditure involve vast disparities in health. A newborn in Africa can expect - if today's conditions do not improve - to live on average 30 years less than a newborn in North America or Europe. A child born in a country like Angola is more than 70 times more likely to die in the first few years of life than a child born in Norway, and a woman giving birth in sub-Saharan Africa is 100 times more likely to die in labour than a woman in a rich country. Early life and premature death is not only frequent in developing countries but may often be `invisible'. In India, only one-third of deaths are accurately registered and for only one-third of them is the cause recorded.
That the sheer chance of being born in a developed rather than in a developing country makes such huge differences in life span and healthy life is a blatant social injustice, all the more in a world that has never been as wealthy as today.
Have a vast divergence between a sustained increase in the income per person in a number of the most developed countries of the world and the quasi stagnant amounts of per capita transfers for economic development and welfare assistance to the developing countries during the 40 years between 1960 and the end of the 20th century. The trend in the new century has, however, been more favourable, particularly for the specific sub-sector of health assistance, notably thanks to the inflow of private donations from major charities. Against this background, the United Nations fixed, in 2000, eight broad `Millennium Development Goals' (MDGs) to be attained by the year 2015. All encompass multiple targets and have some relevance for health; and MDG 4 (reduce the number of deaths in children under 5 by two-thirds with respect to the 1990 level), MDG 5 (reduce the maternal mortality rate by three-quarters in respect to 1990), and MDG 6 (combat HIV/AIDS, malaria, and tuberculosis) focus specifically on health. So far, definite successes are on record, although at a pace unlikely to be sufficient to attain the goals by the 2015-2016 deadlines.
The key role of social determinants, including economic ones, for health not only in developing but also in developed countries has prompted the establishment by the World Health Organization of a Commission on Social Determinants of Health, whose landmark report `Closing the gap in a generation' was published in 2008.
To quote from the report:
Our children have dramatically different life chances depending on where they were born. In Japan or Sweden they can expect to live more than 80 years; in Brazil 72 years; and in one of several African countries, fewer than 50 years. And within countries, the differences in life chances are dramatic and are seen worldwide. The poorest of the poor have high levels of illness and premature mortality.
In fact, homeless people have a life span 20 or 30 years shorter than their fellow citizens living close by in their homes. The report also stresses that in countries at all levels of income, health and illness follow a social gradient: the lower the socio-economic position, the worse the health.
Health without limits?
Within a society, disease has always mobilized at the same time the care of the sick and powers, natural, religious, magic, to fight disease. In the wake of the 17th century's scientific revolution, both care for the patients and powers intended to fight disease became slowly but steadily based on scientific and technical knowledge. Two centuries of development of industrial capitalism produced a further gradual transformation in disease care, treatment, and prevention, reaching in the second half of the 20th century the stage of a mature `health industry', today one of the largest economic sectors in developed countries. Lately this has become, like most other sectors of the economy, tied to the speculative inventiveness of international finance, with immediately tangible adverse consequences. The Food and Agricultural Organization estimates that the current economic slowdown has brought the number of hungry people in the world above the bar of one billion and increased their proportion within the total world population. There is little doubt that unregulated finance, and more generally poorly regulated market forces, are important determinants of today's wide gaps in health conditions within and, much more, between countries. They are also responsible in other ways for a profit-driven rush to expanding health in developed countries.
One example is the offer via the Web of tests alleged to tell you whether your genes make you liable to the future occurrence of particular diseases. Common conditions like cancer, cardiovascular diseases, or diabetes are of course prime targets of the marketing strategy. The only sure thing is that the genetic tests are feasible and that you have to pay for them. How accurately they predict whether a disease will occur is for most of them neither declared nor known, and when the disease will occur is totally unknown. To advertise this approach as `prevention' is mystifying because, in addition, for several conditions such as many cancers there is no well-established preventive measure even if one were to know with absolute certainty that the disease will occur. A second example is disease-mongering, the widening of the definition of treatable diseases so that even the mildest and most dubious cases receive medical treatment. Variants of normal behaviours are then classified as diseases requiring treatment, like the condition of restless leg or generic female sexual dysfunction.
Both these examples have common traits. Under the thin cover of complying with the `right of people to know', they actually promote, for the sake of profit, dependency and suppression of critical judgment, of doctors by persuading them to prescribe drugs for people who could do without; of citizens by making them hungry for more tests, medical examinations, and medical remedies to pursue the mirage of unlimited health. These unhealthy trends go counter to the empowerment of people. A psychologist might say that they actually foster an `infantile regression' among people by subtly fuelling fear and the need for continuous reassurance against it.
Epidemiology for justice in health
A card-carrying epidemiologist once said, `today epidemiology is needed everywhere in medicine and public health'. Although formulated by an interested party, the statement is essentially correct. One major consequence is that no single person can competently master all or most areas of contemporary epidemiology and epidemiologists become specialized in particular fields of the discipline. Thus it is common to hear of genetic, environmental, social, cardiovascular, cancer, and paediatric epidemiology, and many other fields. Whatever their specialty, all epidemiologists share a common core of methods of investigation, of which these texts has attempted to give a bird's-eye view, and a population perspective of health.
The term `population', the trademark of epidemiology, however, covers two distinct aspects. First, population is the working tool of epidemiology, which uses populations to investigate diseases and health in the same way as other research uses mice, hamsters, or cell systems. The second aspect is people awaiting the reduction of their burden of diseases, and this may happen only to the extent that epidemiological research results are translated into effective interventions. Should epidemiologists use populations as expedient tools for science and do nothing about populations as targets for interventions simply because it is not their job as researchers? In academic circles this attitude is not uncommon: results of epidemiological research are best left at the door of colleagues in public health practice and of decision makers, allowing them to use the findings or not, as and when they see fit.
This attitude is objectionable on logical and ethical grounds. It contradicts the claim, very often advanced when requesting funds for epidemiological research, that because epidemiology directly studies humans, it can contribute more immediately than other biomedical research, for example experiments in the laboratory, to people's health.
It also deviates from the ethical principle that Immanuel Kant formulated in neat terms at the time of the Enlightenment: any human should never be regarded only as a means, as would be the case if populations were considered by epidemiologists only as research instruments. Ensuring that results of research are effectively translated into benefits for all people, reducing the social injustices in health, demands an active involvement which may take variable forms, from assistance to full participation in decision making, to social critiques, and to advocacy initiatives. There is no room for confusion between this involvement and the duty of scientific impartiality: when one's ethical and political values are openly declared, scientific impartiality and judgments become well separated from the value judgments inherent in any advocacy or involvement in policy making.
Epidemiology has evolved as a response to diseases in society and is not only the product of technical and scientific developments but, as for any other science, reflects to a variable extent the ideas prevailing in society at different historical times. Today, personal liberty for everybody is a dominant idea, value, and aspiration in society. However, it cannot be `for everybody' if it is not at least approximately an `equal liberty', without the huge differences in power and resources that exist between individuals. Among the resources that feed individual freedom, health is the most basic; our direct experience teaches us that without health personal freedom is severely restricted. Thus advancing justice in health by minimizing health inequalities within and between countries is the common aim of all streams of epidemiology and the acid test of its value to health. As John Rawls put it: `Justice is the first virtue of social institutions, as truth is of systems of thought'. Both are guiding lights for epidemiologists.
