Prawo do informacji genetycznej dotyczącej osoby w prawie międzynarodowym

Abstract

Last decades have seen an extremely rapid development of technology and knowledge, related to usage of persons DNA. This has lead to widespread usage of such information for a great multitude of purposes, from medical to research to prediction of future risks for health or development. The purpose of research was to find answers to three questions. The first one concerns the status of personal genetic information in international law, in the light of proposals concerning the status of human genome as a common heritage of mankind. The second question concerns the existence and the form of a uniform standard of protecting persons genetic information in international law. Third one concerns the role of personal data protection law in safeguarding the genetic information. Notion of genetic information has been used, as explained in the dissertation, to refer to all data associated with human genome – as the law has not adopted a uniform vocabulary in this area. Last three decades have witnessed adoption of multiple documents related to this field. Most far reaching was the concept of establishing human genome as common heritage of mankind in symbolic sense, contained in The Universal Declaration on the Human Genome and Human Right from 1997, the meaning of this proposal was however uncertain and ultimately it has not been translated into specific legal norms. Similarly, most international instruments in this field are non-binding and the main scope of regulation is carried out by the data protection law. THose provisions however do not answer all the interest of a person and seems not to be fully suited to the particularities of genetic information. Those issues are primarily associated with the fact that some of the unspoken assumptions of the legislator, regarding personal data, are not fully applicable to genetic information. This observation applies to the situations where genetic data, as shared data, involves interests and concerns of multiple parties. Furthermore, inherent to the data protection system is the dualistic character of its provisions. Information either is personal data – and is protected, or is not considered as such – and then is outside of scope of regulation. In case of genetic information this does not take into consideration its potential to provide additional information on the person, of the potential for re-identification of a person once the data is anonymized.