Pētniecības biobanku izpētes rezultātu atgriešana: donoru skatījums

Abstract

This report aims to analyse how people who donate their biological samples and personal information to research biobanks perceive the returning of research results -informing them as individuals and society as a whole. It also serves to promote public discussion on ethical issues regarding research biobanking. The analysis of donors' perspectives is based on data gathered by conducting 20 semi-structured qualitative interviews. The conclusions confirm that donors' perspectives on returning of biobank research results are strongly related to their motivation to participate in these research projects. The motivation often is willingness to gain knowledge about their personal health condition. Consequently, in order to stimulate their motivation to donate samples, there is a need to develop a preferable returning of results, specifically individual results. Furthermore, since donors' perspectives differ, a more detailed informed consent should be organized.