What happens with the removed tissue?
The heart tissue can be used worldwide for various types of research. These studies look into the normal functioning of the heart and what exactly goes wrong in (the development of) various heart diseases. Many researchers who use the tissue in the Heart Tissue Bank are affiliated with universities and other research institutions inside and outside the Netherlands. Therefore, in the future it may be possible that the heart tissue and coded data will be forwarded to countries outside the EU. In those countries the EU rules for the protection of personal data do not apply and the level of privacy protection may be less, in which case agreements are always made to protect your data and material according to EU laws and regulations. You can separately consent to the sharing of your data and material outside the EU. Pharmaceutical (commercial) companies can also request tissue, as they conduct valuable research into the development of new medicines and therapies or conduct research into the prevention of cardiovascular diseases. You also give separate permission for sharing your data and materials with these companies. Your tissue and data may also be important for carrying out genetic research related to cardiovascular diseases, for which you can also indicate separately whether you agree or disagree with this.
The studies should benefit cardiovascular research and fit within the Heart Tissue Bank’s objectives. All applications are reviewed by the Biobank Review Committee of the Amsterdam UMC, location AMC.
The Heart Tissue Bank can sometimes show heart tissue for education purposes. In any case, this is performed in a way to prevent disclosure of the identity of the donor. The material will always remain property of the Heart Tissue Bank and will be returned after use.
Interview: The importance of the Heart Tissue Bank
Watch a (Dutch) interview below by Pieter Glijnis (chairman of the PLN Foundation) with researcher Renée Maas.