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Website: www.tisseu.org

Evaluation of Legislation and Related Guidelines in the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union – an Evidence-Based Impact Analysis

6th International Workshop – "Anonymisation and Pseudonymisation as a Means of Privacy Protection”

24/26 March 2010

Organised by the Centre for Health Care Ethics, Stockholm University

Conference venue: Stockholm University – University Campus (Frescati) – Lecture Hall B 5

Wednesday 24th March

Chairman: Claudio Tamburrini

14.00 – 14.15 - Welcome and conference opening – (Claudio Tamburrini, Centre for Healthcare Ethics, Stockholm University)

14.15-14.30 – "Short introduction into the Tiss.EU project" - Christian Lenk (Project coordinator, University of Göttingen)

14.30-15.00 - "Anonymity and pseudonymisation - unclear concepts and legal standards in Swedish biobanking"- Elisabeth Rynning (Depart. of Public Health and Caring Sciences, Uppsala University)

15.00-15.15 - Discussion

15.15-15.45 - “Biobanks: how do we protect donors’ privacy?” – Anders Brinne, Head of IT at Karolinska Institute Biobank

15.45-16.00 – Discussion

19.00 – Reception (venue to be confirmed)

Thursday 25th March

Chairman: Torbjörn Tännsjö

9.30-10.00 - “Various different rationales behind a right to privacy” - Torbjörn Tännsjö, Centre för Healthcare Ethics, Stockholm University.

10.00-10-15 - Discussion

10.15–10.45 - "Finland, the promised land of health registries. Law and practise of Finnish biobank research" - Sirpa Soini (Finish National Institute for Health and Welfare and the Faculty of Law, University of Helsinki)

10.45-11.00 - Discussion

Coffee break – 11.00 – 11.15

11.15–11.45 - "Privacy issues in Finnish biobank legislation" - Lasse Lehtonen (Depart. of Law, University of Helsinki)

11.45 – 12.00 - Discussion

Lunch – 12.00 – 13.15

13.15 – 13.45 - "Anonymization and the right to withdraw consent" (Niklas Juth and Gert Helgesson – LIME (Karolinska Institute, Stockholm)

13.45-14.00 - Discussion

14.00 -14.30 - "Biobanks in Denmark as a research resource" - Lisbeth E. Knudsen (Institute of Public Health, University of Copenhagen)

14.30-14.45 - Discussion

14.45-15.15 - “Balancing of privacy and other interests in Danish Biobank regulation” - Mette Hartlev (Faculty of Law, University of Copenhagen)

15.15-15.30 - Discussion

ISG MEETING 15.30 – 17.00

20.00 – Conference dinner

Restaurant Mårten Trotzig – Västerlånggatan 79 (Old Town)

Friday 26th March

Chair: Judit Sandor (Central European University, Hungary)

10.00 – 10.30 ”Forensic uses of biobanks: an overview” - Bertil Lindblom (Institute of Forensic Genetics, Linköping University Hospital)

10.30-10.45 - Discussion

10.45 – 11.15 – “PKU-biobank and crime: what can and what cannot be done" - Ulrika von Döbel (Head of the PKU-laboratory, Karolinska Institute)

11.15-11.30 - Discussion

11.30 – 12.00 - ”WADA’s anti-doping policy and athletes’ right to privacy” – Claudio Tamburrini (Centre for Healthcare Ethics, Stockholm University)

12.00 – 12.15 – Discussion

Lunch – 12.15 – 13.30