LEGAL AND ETHICAL ASPECTS OF THE PARTICIPATION OF PERSONS WITH RESTRICTED ACTIVE LEGAL CAPACITY IN GENOME STUDIES
Ülle Krikmann1, Krista Kruuv1, Marju Herodes2, Tarmo Sild3, Marika Şmenja4, Tiina Talvik2, Arvo Tikk2
1Estonian Genome Project Foundation, 2University of Tartu, 3LEXTAL Law Firm, 4East-Tallinn Central Hospital
Abstract. The goal of the Estonian Genome Project is to establish a database consisting of phenotype and genotype data of the majority of the Estonian population. The database will allow carrying out genetic and health studies in order to identify genes that cause and influence common diseases, prepare new medicines and introduce the methods of preventive health care. The aim of the present article is to discuss the positive and negative sides of the inclusion of persons with restricted active legal capacity in the large-scale population-based gene studies, as well as its medical, legal and ethical aspects. The right of the minors to participate in genome studies on the one hand, and the obligation to protect them from exploitation on the other, still remain a matter of discussion.