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 Þmenja4, 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.