The Swedish Research Council-funded research infrastructure Biobank Sweden, a National Node of BBMRI-ERIC, supports healthcare providers and universities with medical faculties working towards national harmonization in biobanking.
Representatives from Biobank Sweden’s Steering Committee and National Advisory Board co-signed an opinion piece (https://www.dn.se/debatt/regeringen-maste-genast-lagstifta-om-ny-biobankslag/) in Swedish national newspaper Dagens Nyheter on August 5, 2019.
In the article, they address issues regarding Sweden’s Biobanks in Medical Care Act, which regulates how samples consisting of human biological material may be collected, stored and used for certain purposes. They argue the Act is outdated, particularly in comparison with rules and regulations in other EU countries.
Furthermore, they claim the document contains several legal ambiguities that act as an impediment to medical research, as well as an obstacle in terms of Swedish participation in international research cooperation. This, the group argues, is directly counter-productive to the Swedish government’s ongoing efforts to further strengthen the national life science and medical research sectors, and, as an extension, can harm those who would benefit from a more advantageous research environment, namely the patients contributing the samples.
A proposal for modernized legislation providing better protection of privacy and making crucial research possible has already been made in an inquiry appointed by the Swedish government (https://www.regeringen.se/rattsliga-dokument/statens-offentliga-utredningar/2018/01/sou-20184/). In their opinion piece, Biobank Sweden’s representatives emphasize how important it is that legislative work concerning this proposal can start as soon as possible.