/ International Conference.
New Challenges for Biobanks.
Ethics, Law and Governance
Leuven, Belgium, May 18-20, 2009
MONDAY 18th MAY 2009
13.00 -
13.30 / Registration & Coffee
Willem Van Croy
13.30
-
15.00 / Welcome: Paul Schotsmans
Vice-Dean Faculty of Medicine, K.U. Leuven, Belgium
PLENARY SESSION 1: Biobanking and governance
Chair : Kris Dierickx (K.U. Leuven, Belgium)
Herbert Gottweis (University of Vienna, Austria)
Biobanks: Success or failure
Kurt Zatloukal (University of Graz, Austria)
The Pan-European Research Infrastructure for
biobanking and biomolecular resources (BBMRI)
Discussion
15.00
-
16.00 / PLENARY SESSION 2: Biobanking and confidentiality
Chair: Jan Helge Solbakk (University of Oslo, Norway)
Lori Andrews (Chicago-Kent College of Law, Chicago, USA)
Biobanks: New Challenges for human rights
Paula Lobato de Faria (New University of Lisbon, Portugal)
Confidentiality in Biobanks – Origins, present and future of a legal myth
Discussion
16.00
-
16.30 / Refreshments
Willem Van Croy / Sint-Gommarius / St Barbara / Anna de Paepe
Parallel SESSION 1
Governance
Chair: Kris Dierickx (Center for Biomedical Ethics and Law, K.U.Leuven, Belgium) / Parallel SESSION 2
‘Country Reports on biobanks’
Chair: Jan Reinert Karlsen (University of Oslo, Norway) / Parallel SESSION 3
‘Consent models’
Chair: Petra Bárd (Center for Ethics and Law in Biomedicine, Central European University, Hungary) / Parallel SESSION 4
Laws and biobanking
Chair: Herman Nys (Center for Biomedical Ethics and Law, K.U.Leuven, Belgium)
16.30
-
17.00 / From medical biobanks to research tools: Governance and human rights
Rial-Sebbag Emmanuelle, Duguet Anne-Marie, Anne Cambon Thomsen (University of Toulouse, France) / Trust Banks: The Legal Status of Biobanks in Canada, Creditors’ Rights and Private Property.
Godlovitch, Glenys; Geransar, Rose; Zadunayski, Anna (University of Calgary, Canada) /
Broad consent for narrow interests: the translational ethics of post genomic research biobanking
Jan Reinert Karlsen (University of Oslo, Norway), Jan Helge Solbakk (University of Oslo and University of Bergen, Norway), and Søren Holm (University of Cardiff, UK) / Technical, ethical, and legal framework for the organization of an University Hospital Biobank (Hospital de Clínicas de Porto Alegre/HCPA)
Fernandes, Márcia Santana; Ashton-Prolla, Patrícia: Matte, Ursula; Martins-Costa, Judith; Clausell, Nadine; Kuchembecker, Ricardo; Marodin, Gabriela; Goldim, José Roberto. (Hospital de Clínicas de Porto Alegre, Laboratório de Pesquisa em Bioética e Ética na Ciencia, Porto Alegre, Brasil)
17.00 -
17.30 /
Orchestrating ‘the end of the beginning’: A political science perspective on large scale biobank collaboration
Lauss, Georg
(University of Vienna, Austria) / Saudi Biobank. Novel Concept with Distinctive Ethical Challenges
Al Jumah, Mohammed1; Alahmad, Ghiath1; Al Swailem , Abdulaziz2;and Alem, Hala1 (1King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia, 2King Abdulaziz City for Science and Technology. Riyadh, Saudi Arabia) / Developing an appropriate consent model for biobanks in a globalized environment: The case in support of ‘broad’ consent
Otlowski, Margaret
(University of Tasmania, Australia) / Biobanking, legal discourse, and governmentality
Hausman, Jean-Marc (Université Catholique de Louvain, Belgium)
17.30
-
18.00 /
Biobanks, networks and networks of networks
Marcus Griffin and Darren Shickle (University of Leeds, UK) / A duty based approach to Biobanking from a Confucian perspective
Ma, Yonghui (University of Manchester, UK) / 17:30-17:45
EUROGENGUIDE: An appropriate informed process for public understanding genetic research and biobanks
Casati E. 1, Mckeown A.2, Casati S. 1, Lewis C. 2, Lecchi L. 1, Giovanelli S.1, Rebulla P. 1, Kent A. 2, Tedeschi S. 1, Coviello D.A. 1;
(1Fondazione IRCCS, Milan Italy), (2Genetic Interest Group, London, UK. )
17:45-18:00
An introspective ethical analysis of emerging models of consent for genomics and biobanking.
Bowman, Kerry; Smith, Maxwell (University of Toronto, Canada) / The newborn Belgian law on biobanks: some ethical reflections
Sigrid Sterckx (Ghent University & Vrije Universiteit Brussel, Belgium)
18.00
-
18.30 / Sound planning, governance and management can provide focus and unite a consortium
Thompson, Anne (Victorian Cancer Biobank, Melbourne, Australia) / Biobanks and the status of the human body
Ferrari Caterina
(ISPO, UO Epidemiologia ambientale-occupazionale, Firenze, Italy) / 18:00-18:15
Biobanks, biomolecular tools and biocomputing - is any change in the classical view of biobanks?
Ioana Ispas
18:15-18:30
Biobanking in translational medicine: the challenge of informed consent process
Goldim, Jose Roberto; Protas, Julia; Fernandes, Marcia Santana. / Biobanking and Regulation – Portuguese Solutions in a Comparative Perspective
Vale e Reis, Rafael (University of Coimbra, Portugal)
Lemaire Faculty Club
19.30 / Reception
20.00 / Conference Dinner
TUESDAY 19th MAY 2009
8.30
-
9.00 / Welcome Refreshments
Willem Van Croy
9.00
-
10.00 / PLENARY SESSION 3:
Harmonisation of the regulatory framework of biobanks and privacy protection
Chair: Herman Nys (K.U.Leuven, Belgium)
Elisabeth Rynning (Uppsala University, Sweden)
Harmonisation of the regulatory framework of biobanks and privacy protection
Judit Sándor (Central European University, Hungary)
From private to public? Legal concepts of the right to privacy and
ownership in the legal regulation of biobanks
Discussion
10.00 -
10.30 / Refreshments
Willem Van Croy / St Barbara / M.M. Van Hamaele
Parallel SESSION 5
‘Forensic DNA analysis and biobanking’
Chair: Marcus Griffin (University of Leeds, Hungary) / Parallel SESSION 6
‘Country Reports on Biobanks’
Chair: Judit Sandor (Central European University, Hungary) / Parallel SESSION 7
‘Informed consent for biobanking research’
Chair: Herbert Gottweis (University of Vienna, Austria)
10.30 -
11.00 / Forensic DNA Analysis and biobanking in France: legal and ethical aspects
Duguet Anne-Marie, Rial Emmanuelle, Cambon Thomsen Anne
(University of Toulouse, France) / The Coverage of Biobank Legal Regulation: The Emerging Taiwan's Biobank Act as an Example
Fan, Chien-Te; Chen, Chung-Lin (National Tsing Hua University, Taiwan) / A unified model of informed consent for biobanking research based on a contract between science and law
Salvaterra, Elena
11.00 -
11.30 / DNA databases and biobanks – The Portugese legal and ethical framework
Águas, Cíntia; Carvalho, Ana Sofia; Martinho da Silva, Paula; Soares, Jorge (Portuguese Catholic University, Portugal) / Biobanking and research: Reconciling US law, ethics, and practice
Wolf, Leslie E (Georgia State University, College of Law, Atlanta, USA) / Culture, identity and consent for genomic research.
Bowman, Kerry; Smith, Maxwell (University of Toronto, Canada)
11.30 - 12.00 / Forensic DNA database in Portugal – Public trust and contemporary issues in practices and policy
Machado, Helena (University of Minho); Silva, Susana (University of Minho, Portugal) / Between Individualism and Solidarity. Biobanking in Sweden
Beier, Katharina (University of Göttingen, Germany) /
Biological sample collections from minors for genetic research
Hens, Kristien; Dierickx, Kris (K.U.Leuven, Belgium)
12.00 -
12.30 / Protection of Non-Welfare Interests in the Research Uses of Archived Biological Samples
Tomlinson, Tom
(Michigan State University, USA) / New opportunities and challenges in archive tissue bio-banking
Stanta, Giorgio (University of Trieste, Italy) / Donors’ views on the future return of individual research results in a population-based genetic cohort study
MATSUI, Kenji; KITA, Yoshikuni
(University of Tokyo, Japan)
Infirmerie
12.30 -
14.00 / Lunch
Willem Van Croy / St Barbara / M.M. Van Hamaele
Parallel SESSION 8
‘‘Forensic DNA analysis and biobanking’
Chair: Jan Helge Solbakk (University of Oslo, Norway) / Parallel SESSION 9
Commercialization
Chair: Darren Shickle (University of Leeds, United Kingdom) / Parallel SESSION 10
‘Privacy and access to genetic research data’
Chair: Georg Lauss (University of Vienna, Austria)
14.00 -
14.30 / The Forensic DNA-databases in EU countries and cross-board cooperation against crime. The new Portuguese Law (Law 5/2008, 12th February.2008)
Moniz, Helena (University of Coimbra, Portugal) / Commercial biobanking and privacy rights
Ursin, Lars Øystein / New issues, old solutions: privacy governance in the genetic research era
Ogbogu, Ubaka
(University of Toronto, Canada)
14.30 – 15.00 /
Genetic databases in the forensic context – A European perspective
Petra Bárd (Central European University, Hungary) / Private biobanks in Italy: An overview of the legal framework
D’Auria, Massimo; Spina, Alessandro (University of Siena, Italy) / Balancing public and private interests in privacy: Genetic research and access to information law
Lemmens, Trudo
(University of Toronto, Canada)
15.00 -
15.30 /
Liberty and/or Security. Some Ethical Remarks on Forensic DNA Databases
Patyn, Annemie; Dierickx, Kris (K.U.Leuven, Belgium) / From idealism to realism; Commercial ventures in publicly funded biobanks.
Steinsbekk, Kristin Solum; Myskja,Bjørn Kåre; Solberg, Berge (NTNU, Trondheim, Norway) / Privacy and the entanglement of consent, security and accountability
Austin, Lisa
(University of Toronto, Canada)
15.30 -
16.00 / Refreshments
Willem Van Croy
16.00-17.00 / PLENARY SESSION 4: Forensic DNA
Chair: Kris Dierickx (K.U.Leuven, Belgium)
Jean-Jacques Cassiman (K.U.Leuven, Belgium)
Forensic and other non-medical DNA and DNA profile banks:
a contribution or threat to society?
Robin Williams (Durham University, UK)
Forensic DNA Databanking: Trajectories of innovation and contestation.
Discussion
17.00-18.00 / PLENARY SESSION 5: Population and small scale biobanks
Chair: Darren Shickle (Leeds University, UK)
Graeme Laurie (University of Edinburgh, UK)
UK Biobank Ethics and Governance Council: An exercise in added value?
Bartha Maria Knoppers (University of Montréal, Canada)
Access to population biobanks: How “public”?
Discussion
18.00-18.15 / Closure of conference: Darren Shickle (Leeds University, UK)
WEDNESDAY 20th MAY 2009
Stakeholder meeting
9.00
-
10.00 / Welcome Refreshments
Lemaire
10.00
-
12.30 / Welcome: Pascal Borry (K.U.Leuven)
Moderator: Marc Leys
Privacy and transnational practices
Short statements: Herbert Gottweis, Judit Sandor, Jan Helge Solbakk
Discussion in small groups and panel discussion
Infirmerie
Lunch
14.00
-
16.00 / Moderator: Marc Leys
Biobanking and harmonization
Short statements: Herman Nys, Darren Shickle, Kris Dierickx
Discussion in small groups and panel discussion
Reception