Читать книгу Pediatric Epidemiology - Группа авторов - Страница 13

Epidemiology as the interface between social sciences and natural sciences [4] plays a key role in the context of health research and health training. The exact kind of role is a matter for debate within epidemiology, ranging from neutral scientific discipline to active shaper of health training [5, 6]. Does epidemiology see itself as a neutral discipline making efforts to gather data, or should it contribute actively to health training on the basis of a normative target? While classical definitions of epidemiology and ethical guidelines emphasise that epidemiology should actively perceive its role in health training and health policies [6], there are also some arguments against such a position. Thus, scientific objectivity is endangered when contributing towards shaping health training is to be a task of epidemiology [6]; also, active intervention and shaping of public health lie outside the competence of researchers [4]. In the area of research on children, this conflict arises clearly. Children are more strongly subject to measures of prevention and health maintenance. Their possibilities of escaping concrete measures are strongly limited owing to their limited co-determination. Paediatric epidemiology has a special responsibility here. While the discussion hitherto on the role of epidemiology has started with the latter’s own understanding, it seems cogent to ask about the implications of these various roles for the probands and other population groups. At the core of these thoughts, there is the concept of disease and causality, as implicit and – frequently – insufficiently reflected theoretical basis [4]. Especially in research on vulnerable groups such as children, it is central from an ethical point of view not theoretically reflect on these basic assumptions. Rather, reference must be made to the specific social, political, and also cultural realities of life for these groups, and this must be integrated into research.

Complex diseases with a large number of known (or unknown, for that matter) possible causes are indeed cases where epidemiology can often only examine partial aspects [5]. The question about those aspects that are in the focus of research can decisively shape the results. When medical and physiological reasons are in the foreground, for instance, possible socio-psychological aspects may be excluded under certain circumstances. In such a case, there is often a dubious reduction to a purely physiological and functional concept of illness. This is all the more serious, as, according to the WHO definition of illness, the actual disease value is determined by the perception of the patient. Frequently, children are not involved in the process of determining illness, or only to a minor extent and in the case of smaller children, this is simply not possible. This means that it is determined externally, not by those affected themselves, whether the disposition examined is an illness or not.

The question of the position of paediatric epidemiology between health research and health care deals with a fundamental problem. While the ethics of public health and epidemiology, as well as medical ethics, often operate with more pragmatic, rather than theoretically supported, principles, the individual theoretical and practical routes of access to epidemiological research are based implicitly on certain value ideas and theories. Frequently remarked on are the primarily utilitarian theories forming the background of ethical discussions and thoughts in the areas of public health and epidemiology [7]. This suggests that public health and epidemiology as its core discipline pose the question of maximising general use, that is, a general maximising of health, but here already the objection finds consideration that maximising general use cannot justify any breach of individual rights [8]. As far as conflicts occur in paediatric epidemiology between general use and individual rights, it is certainly called for to take the vulnerability of children into consideration. In ethical consideration of the legitimacy of studies and reflecting on the possible dangers for probands emanating from the study itself or its consequences, vulnerability should most certainly be in the centre. Part of the responsibility of paediatric epidemiology is formed by a consciously theoretical fundament that does not ignore the possible consequences of a study within the framework of health care and training. Epidemiology, apart from the knowledge of the spread and the causes of diseases within a defined group, also has a normative goal, which might best be adumbrated with the catchword “prevention.” The need for effective prevention is heightened by the raising of the average age. This begins already in childhood. But not only the prevention of illnesses throughout the course of life but also possible measures aimed at furthering the child’s motor skills, intelligence, and so on are coming increasingly into the focus of epidemiological research. In so doing, there is the danger that social demands are perceived as normative standards and paediatric epidemiology is faced with the task of delivering knowledge enabling these social norms to be implemented in the sense of (ideologically influenced) health training. The border between justified worry about the health of a child and an “optimization” according to social demands is very porous.

The transition between purely descriptive epidemiological studies and such studies that see the minors involved as “ill” or “healthy” is blurred; the latter can have an influence on probands and their social environment. If concrete medical interventions result, or if such interventions (e.g., taking blood samples) are a part of the study design in any case, then a graduation and transition of epidemiological and clinical research appear possible. This renders a look at the history of research with children quite apart from the purely epidemiological context, for such a retrospection shows that children, especially those institutionalised, were not only frequently desirable objects of research, but also that scandals involving children let to the codification of ethical rules, and especially to the necessity of informed consent. At the same time it becomes clear that such ethical codes could not always protect the vulnerable group of institutionalised children. This, in turn, lets the necessity for informed consent on the part of the proband him- or herself appear as something to be held in especially high esteem, and not lightly questioned. On the contrary, the question poses itself of how this can be better integrated into day-to-day research, so as to become a matter of routine.