RIGTH TO KNOW

Self-determination policy and openness in biobanking

Every sample donor has the right to

  • know if biobank holds samples taken of him or her
  • know if his or her samples are being stored based on consent or notification
  • know the source of his or her personal data associated with the samples
  • know to which studies their sample and associated data have been assigned to
  • know about the research results and development work if it may have a positive impact on the patient’s own disease

The donor’s right to request further information about the possible impact or potential treatment applies to biobank research that can offer the donor or his/her family members remarkable new information about the donor’s disease or potential health threat.