Establishment of a national sample collection register discussed
The present legislation on biobanks needs specification since it is scattered, partly defective and inconsistent. The alternatives are to clarify the present legislation, to draw up a framework law on biobank operations combined with the specification of other provisions, or to prepare a totally new legislation on biobanks. So is stated in the mid-term report of a working group to promote the use of medical collections of human origin. The working group submitted its report to the Ministry of Social Affairs and Health on Friday 15 December 2006.
The Working Group preliminarily proposes establishment of a national sample collection register. The sample collection register would keep the relevant register and grant licences for the establishment and closure of biobanks. The national register would improve the sample donors’ access to information and their opportunities to influence the use of their samples also after the giving of the sample.
According to the proposal of the working group, no national individual sample collection should be established in Finland but the sample collections should be formed subject to a licence. The bodies responsible for the collections should administer the data collected, their protection, the scope and up-to-dateness of the consent given in the context of giving a sample, the quality of samples and other issues relating to the activity.
The research projects gathering sample collections will be assessed in ethics committees whose composition, expertise and location will be discussed in spring 2007. Furthermore, the working group will discuss e.g. various possibilities to safeguard the sample donors’ right to both limit their consent and to cancel their consent to using their sample in research.
The Ministry of Social Affairs and Health set up the working group on biobanks on 14 June 2006. Its term will expire at the end in June 2007. The mid-term reportLink to an external website can be read at the working group’s project web siteLink to an external website.
For further information please contact the chairperson of the working group, Deputy Director-General Marja-Liisa Partanen (09) 160 74714 or secretaries: Ministerial Adviser Kimmo Pitkänen, tel. (09) 160 74112, Ministerial Adviser Päivi Kaartamo, tel. (09) 160 74353 and Senior Medical Officer Ritva Halila, tel. (09) 160 73834.