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Part II: Harmonizing Symposium Articles 24 Privacy Laws Biobanks as a Central Part of the to Enable 7 Finnish Growth and Genomic Locating Biobanks in the Canadian Strategies: How to Balance Privacy in International Privacy Maze an Innovation Ecosystem? Biobank Katie M. Saulnier and Yann Joly Sirpa Soini Although Canada has not yet enacted any biobanking- Finland has aimed to make itself an international leader Research specific privacy law, guidance and oversight are provided in genomic research and related business and, in working via various federal and provincial health and privacy- towards that goal, has enacted biobank legislation. The related laws as well as via ethics and policy documents. Biobank Act requires biobanks to gain approval, be super- Guest Edited by The primary policy document governing health research, vised, and register at the national level. Numerous other the Tri-Council Policy Statement: Ethical Conduct for laws may also apply in any given research setting, such Mark A. Rothstein Research Involving Humans, provides the framework as the Personal Data Act, the Medical Research Act, and for the strong role of Research Ethics Boards in Canada, the Act on Medical Use of Human Organs and Tissues. and Bartha Maria and limits research funding from Canada’s three main In terms of privacy protection, anonymization is gener- federal funding agencies to those who agree to adhere to ally not permitted under Finnish law and therefore most Knoppers its policies. The broad consent model is gaining traction biobanks pseudonomize data and samples. However, in Canada, although lack of legal and constitutional prece- the broad understanding of what is identifiable data in dence for the broad consent or opt-out options makes this Finland has created difficulties in sharing with non-EU an evolving issue. In general, data is required to be coded; countries. Furthermore, consent to biobank research is 1 more specific security measures are outlined in guidelines only applicable to the sample and related data, not to data Letter from that may be implemented by local policy. International stored in other health-related registries, and consent is sharing is allowed, and Canada meets the European only to the field of research for that particular biobank. Union’s standards for receipt of data and samples. These restrictions impede the sharing of samples and data the Editor for research. 20 Cover image ©Corbis 35 Biobanking in Estonia Privacy Laws and Biobanking Aime Keis in Germany Estonia is a democratic, parliamentary republic with a health care system that is built on the principle of com- Nils Hoppe pulsory, solidarity-based insurance and the all-round While the possibility of enacting a sui generis Biobank availability of services of private service providers.