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
Parallel SESSION 2
‘Country Reports on
biobanks’
Chair: Jan Reinert
Karlsen (University of
Oslo, Norway)
Parallel SESSION 3
‘Consent models’
Parallel SESSION 4
Laws and biobanking
Chair: Kris Dierickx
(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)
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)
17.30
18.00
Biobanks, networks
and networks of
networks
Marcus Griffin and
Darren Shickle
(University of Leeds,
UK)
Trust Banks: The Legal
Status of Biobanks in
Canada, Creditors’
Rights and Private
Property.
Godlovitch, Glenys;
Geransar, Rose;
Zadunayski, Anna
(University of Calgary,
Canada)
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)
A duty based approach
to Biobanking from a
Confucian perspective
Ma, Yonghui (University
of Manchester, UK)
Chair: Petra Bárd
(Center for Ethics and
Law in Biomedicine,
Central European
University, Hungary)
Broad consent for narrow
interests: the translational
ethics of post genomic
research biobanking
Chair: Herman Nys
(Center for Biomedical
Ethics and Law,
K.U.Leuven, Belgium)
Technical, ethical, and
legal framework for the
organization of an
University Hospital
Biobank (Hospital de
Clínicas de Porto
Alegre/HCPA)
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)
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)
Developing an
appropriate consent
model for biobanks in a
globalized environment:
The case in support of
‘broad’ consent
Biobanking, legal
discourse, and
governmentality
Hausman, Jean-Marc
(Université Catholique
de Louvain, Belgium)
Otlowski, Margaret
(University of Tasmania,
Australia)
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;
1
( Fondazione IRCCS,
Milan Italy), (2Genetic
The newborn Belgian
law on biobanks: some
ethical reflections
Sigrid Sterckx (Ghent
University & Vrije
Universiteit Brussel,
Belgium)
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)
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
ambientaleoccupazionale, 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.
19.30
Lemaire Faculty Club
Reception
20.00
Conference Dinner
Biobanking and
Regulation –
Portuguese Solutions in
a Comparative
Perspective
Vale e Reis, Rafael
(University of Coimbra,
Portugal)
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
Parallel SESSION 5
‘Forensic DNA analysis and
biobanking’
Chair: Marcus Griffin
(University of Leeds, Hungary)
10.30
11.00
11.00
11.30
11.30
12.00
Forensic DNA Analysis and
biobanking in France: legal and
ethical aspects
St Barbara
M.M. Van Hamaele
Parallel SESSION 6
‘Country Reports on
Biobanks’
Parallel SESSION 7
‘Informed consent for
biobanking research’
Chair: Judit Sandor (Central
European University, Hungary)
Chair: Herbert Gottweis
(University of Vienna, Austria)
The Coverage of Biobank Legal
Regulation: The Emerging
Taiwan's Biobank Act as an
Example
A unified model of informed
consent for biobanking research
based on a contract between
science and law
Duguet Anne-Marie, Rial
Emmanuelle, Cambon Thomsen
Anne
(University of Toulouse, France)
Fan, Chien-Te; Chen, Chung-Lin
(National Tsing Hua University,
Taiwan)
Salvaterra, Elena
DNA databases and biobanks –
The Portugese legal and ethical
framework
Biobanking and research:
Reconciling US law, ethics, and
practice
Culture, identity and consent for
genomic research.
Águas, Cíntia; Carvalho, Ana
Sofia; Martinho da Silva, Paula;
Soares, Jorge (Portuguese
Catholic University, Portugal)
Wolf, Leslie E (Georgia State
University, College of Law,
Atlanta, USA)
Forensic DNA database in
Portugal – Public trust and
contemporary issues in practices
and policy
Between Individualism and
Solidarity. Biobanking in
Sweden
Machado, Helena (University of
Minho); Silva, Susana (University
of Minho, Portugal)
Beier, Katharina (University of
Göttingen, Germany)
Bowman, Kerry; Smith, Maxwell
(University of Toronto, Canada)
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
New opportunities and
challenges in archive tissue biobanking
Tomlinson, Tom
(Michigan State University, USA)
Stanta, Giorgio (University of
Trieste, Italy)
MATSUI, Kenji; KITA, Yoshikuni
(University of Tokyo, Japan)
Infirmerie
Lunch
12.30
14.00
Willem Van Croy
St Barbara
Parallel SESSION 8
‘‘Forensic DNA analysis and
biobanking’
Parallel SESSION 9
Commercialization
Chair: Jan Helge Solbakk
(University of Oslo, Norway)
14.00
14.30
Donors’ views on the future return
of individual research results in a
population-based genetic cohort
study
The Forensic DNA-databases in
EU countries and cross-board
cooperation against crime. The
new Portuguese Law (Law
5/2008, 12th February.2008)
Chair: Darren Shickle
(University of Leeds, United
Kingdom)
Commercial biobanking and
privacy rights
M.M. Van Hamaele
Parallel SESSION 10
‘Privacy and access to genetic
research data’
Chair: Georg Lauss (University of
Vienna, Austria)
New issues, old solutions: privacy
governance in the genetic research
era
Ursin, Lars Øystein
Ogbogu, Ubaka
(University of Toronto, Canada)
Moniz, Helena (University of
Coimbra, Portugal)
14.30
–
15.00
Genetic databases in the forensic
context – A European
perspective
Petra Bárd (Central European
University, Hungary)
15.00
15.30
Liberty and/or Security. Some
Ethical Remarks on Forensic
DNA Databases
Patyn, Annemie; Dierickx, Kris
(K.U.Leuven, Belgium)
15.30
16.00
Private biobanks in Italy: An
overview of the legal framework
D’Auria, Massimo; Spina,
Alessandro (University of
Siena, Italy)
From idealism to realism;
Commercial ventures in publicly
funded biobanks.
Steinsbekk, Kristin Solum;
Myskja,Bjørn Kåre; Solberg,
Berge (NTNU, Trondheim,
Norway)
Refreshments
Balancing public and private
interests in privacy: Genetic
research and access to information
law
Lemmens, Trudo
(University of Toronto, Canada)
Privacy and the entanglement of
consent, security and accountability
Austin, Lisa
(University of Toronto, Canada)
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