Provisions on the rights of biobank sample donors to receive information about their samples and the related data are laid down in the Biobank Act (688/2012, Section 39).
Patients who have donated samples to the Finnish Hematology Registry and Clinical Biobank have the right to check whether their samples and related data are being stored in the biobank. Sample donors have the right to ask where data concerning them has been obtained from, and who has been granted access to their samples and data. Sample donors are also entitled to receive information concerning their health as determined based on a sample.
Sample donors are provided with an opportunity to receive an account of the significance of such information. A fee is charged for explaining the significance of the information. This fee may not be higher than the expenses incurred in providing the explanation. Sample donors will be referred to healthcare service providers or genetic counseling if needed.
Sample donors have the right to limit or withdraw their consent at any time without this affecting their future care. Donors may also decide whether or not they wish to receive information, which may be of clinical significance, on the findings from analysis of their sample.