Human Rights, genetic heritage and human genetic data: a critical analysis to the doctrine of genetic data as diffuse interest

Abstract

The legal protection of genetic data is a key area for the reconstruction of the human rights theory in a democratic state. Genetic data may be considered biological expressions of human personalities. Thus, it is not difficult to relate them with human rights. However, ownership of these data has been a polemic issue in past years. Is the protection of genetic data truly based on the "diffuse interest"? The aim of this study was to review the subject from a theoretic-documental perspective, as well as to present an investigative and reflective analysis of hermeneutical character. Based on the tension between facticity and validity, already debated by Habermas, the current discourse of diffuse interests lacks validation and relies on facts, thus, based on its social relevance. The detachment from a normative validation by the legal system is concerning. If we revise the human rights under a more democratic perspective, it would be possible to achieve an effective legal validation of genetic data. The legal parameters that include public interests must not neglect the human rights system. Similarly, rules that contain a seemingly private interest must not ignore the social environment in which it is contextualized. Public and private interests are interdependent. Under a moral perspective, axiology may not value “a priori” the public over the private interest. However, such consideration is challenging. Currently, the genetic data is not diffuse. In fact, currently, there is no room for debates on its legal implementation. The legality of interests presupposes a generalization of values to an undetermined number of people (universality). Only with the aid of human rights may we achieve this legal foundation in an efficient manner.