As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in a second (...) step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one’s raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects’ legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations. (shrink)

Marxist philosophers are increasingly beginning to elaborate a philosophical axiology of their own, to articulate the meaning of socialism in axiological terms. Traditionally, Marxist doctrine has been very eager to present socialism and its motivation as a matter of scientific prediction rather than in terms of value judgments, wishes, or the proclamation of ideals. A more accurate analysis, however, shows that the Marxist undertanding of human social practice presupposes some active striving in relation to which all objects and circumstances of (...) human life receive a positive or negative meaning. It is just this practical relation of human subjects to their world (and of their world to them) that is conceptually grasped by the notion of value.From the theoretical point of view, Marxist axiology is not oriented towards some “realm of values” all values and value relations are understood strictly in anthropological terms as components of human and social practice, as some particular aspects which objects and circumstances assume in relation to actively striving beings and their qualitatively determined self-affirmation on a definite historical level. Marxist axiology presents itself both as a theoretical analysis of these value qualities and relations, and at the same time as a doctrine of practical involvement whose aim is to clarify and strengthen the socialist value consciousness.The basis of all these value relations lies in the system of human needs. According to Marxism, this system proves to be multi-dimensional, encompassing as its fundament the complex of “material needs” which are to be satisfied through work. But equally important and urgent for human beings are those needs and requirements in relation to which all social relations are characterized as being “worthy” or “unworthy” of man (such judgments being in accordance with some historical standard of claims). Finally, there are also those peculiar needs basic to the “aesthetic” qualities of objects as well as to the free (not imposed by natural or social necessities) and “purposeless” activities of human play and self-realization. The desideratum of socialism is to bring about a harmoniously proportioned synthesis in the satisfaction of the totality of human needs for the totality of human beings. Socialism is not only necessary and predictable in a scientific sense but also valuable and desirable for people.Several Marxist (and especially Soviet) authors have worked out the outlines of a Marxist philosophical axiology (V. P. Tugarinov, O. M. Bakuradze, V. A. Vasilenko and others). The opponents of such an enterprise (O. G. Drobnickij and others) have more or less radically contested the value and legitimacy of such a theory of value, for they consider value consciousness as a part of a pre-scientific way of thought. On the theoretical level the abstract specification of such value relationships constitute an artificial separation of the theoretical-practical unity and totality of human relations to the world.The author finds these objections not convincing because the danger of hypostatizing and isolating the “values”, of presenting them as some kind of substantial eternal entities, can fully be overcome by anthropological integration and sociological concretization of the “value aspect”. In a Marxist “philosophy of practice” something is not valuable in itself but is either positively or negatively significant for human beings. Certainly this development of axiology in Marxism is an attempt to set up a counterweight to the traditional scientific objectivism of the Marxist doctrine by confirming the right of people to judge and act “subjectively” on certain issues. (shrink)