Genomitutkimukset ja lapsen puolesta annettu suostumus
Avainsanat:
lapsen etu, suostumus, lapsen huolto, geneettiset tutkimukset, biopankitAbstrakti
Genome research and consent on the behalf of a child
Personalised medicine using genome data aims at better-targeted disease screening, refined diagnostics, and the selection of the most effective treatment for individuals. The understanding and utilisation of genome data are still at an early stage, but a lot of research is going on and the development is fast. It is also necessary to pursue genome research involving children, as children also have the right to the best possible treatment and medication.
Legal questions concerning genome research involving children are particularly interesting where participation in early childhood is based on proxy consent and where data is retained for future research purposes. In addition to information on the donor child, genomic data always contains information also on both parents and other close relatives. Some research findings may be relevant to the child only later, in adulthood. Samples and data can be stored for decades in biobanks. This gives rise to questions, e.g., on what the limits are in decision-making on the behalf of a child, on whether consent by both parents is always required for testing, on whom to inform about the findings, and on who is to decide to whom and when the findings are disclosed.
The author examines the relevant provisions in international treaties and Finnish legislation. The research questions are especially interesting today, as a national genome database is now under development in Finland. At the same time, new legislation concerning the processing of genome data is under preparation. The Finnish Biobank Act is being reformed, as well.
The current provisions relating to children are focused on the child’s right to self-determination. They do not take very well into account all possible effects on the child’s privacy later, in adolescence and adulthood. To some extent, also the parents’ obligation to act together is currently regulated inconsistently and unclearly.
