Liis Loorits

Title: 'Integrating Clinical and Genomic Data in Estonia Health Information System: Technological, Legal, Ethical and Social Perspectives'

Supervisor: Dr. Tarmo Kalvet

Opponent: Priit Kruus, MSc

Defense: 10 June 2016


Abstract: The use of genetic data gained wider attention when the Human Genome Project (HGP) was reaching its end. Furthermore, Estonia was among the first countries to launch a population based biobank and at the end of 2014, it was seen that it is possible to use the data in hospitals. This integration raises several technological, legal, ethical and social questions in theory and in practice. The current Estonian situation was studied in terms of these issues and the results confirmed that there is a need for standardisation guidelines for data storing and a technological solution for integrating unstructured data. The ethical issues of how closing the genetic data by a person affects their closest relatives and if a person should be compensated when their data is used need further discussion. Furthermore, there is a need for training and education for the healthcare professionals. Overall, it can be said that with the positive attitudes towards genomic medicine, existing nationwide IT infrastructures and the population based genome bank, Estonia is in a good position for realising the integration in the coming years.

Keywords: Health care, genome bank, health information system, technology adoption and diffusion, Estonia