Genetic Information in the Medical Context and the Scope of Personal Autonomy in the European Legal Space
SpeakersDr Atina Krajewska (Visiting Research Fellow, Egenis, University of Exeter)
VenueBoardroom ESRC Genomics Policy and Research Forum, 3rd Floor, St John's Land, Holyrood Road, Edinburgh
Event detailsThe potential benefits in the exploitation of genetic information - shared by humans in over 99% - strengthens considerably state's claims to limit personal autonomy for the sake of the protection of public health. At the same time the access to unique genetic data, obtained in the course of postnatal, prenatal and preimplantation genetic diagnosis and later stored in genetic data banks brings the risk of discrimination and violation of human dignity and human rights. The question arises of how law resolves the conflicts of rights occurring between different actors. What are the legal boundaries limiting the right to personal freedom, self-determination and privacy. Is a unification at the supranational level possible in the light of the solutions adopted by national legislators? In order to answer these questions, a comparative analysis was conducted of the binding and non-binding EU, Council of Europe and national regulations and jurisprudence in Germany, Poland and the UK. The lack of coherent European vision of how to deal with genetic information seems to stem from the fact that there are differences in understanding the crucial notions of data protection law, human rights such as human dignity, privacy and public interest as well as embryonic life.