Nordic Biobank Research
Conference at Uppsala Konsert & Kongress, 3-4 May, in collaboration with the Centre for Research Ethics & Bioethics (CRB) and the BioBanking and Molecular Resource Infrastructure of Sweden (BBMRI.se)

Summary

Programme

The aim of the conference is to discuss Nordic collaboration in biobank based research. The Nordic countries have a long history of utilising biological samples, patient records and health registers to study disease in the population and develop new forms of intervention, treatments and medications. Biobanking, however, raises ethical questions on how to address integrity, privacy, access, legislation and protection from information excess in light of the possibilities to understand and treat diseases using new technology.

The conference will investigate opportunities and obstacles of getting new knowledge by using integrated information from registers, patient records and biobanks. We seek to address the question of whether there is a need for a wider view of autonomy for biobank based research and what this would entail, e.g regarding informed consent and ethical review? Is the perspective of public trust eroding when all focus is on informed consent? Individual rights or public good – how should the balance be made in association with biobank based research? Is ethical review of biobank based research up to date? In brief, what are the interests at stake that need protection on the one hand and promotion on the other?

About the speakers:

State of the art of international biobank research
Kristian Hveem, Professor, Norwegian University of Science and Technology

Benefits of biobank research
Helena Kääriäinen, Professor, National Institute for Health and Welfare, Finland
Abstract

Biobanking and legislation. Overview on current trends and challenges
Sirpa Soini, National Institute for Health and Welfare, Finland

Risks of biobank research
Jan Helge Solbakk, Professor, Section for Medical Ethics, Faculty of Medicine, University of Oslo
Abstract

Collecting samples for future uses. Case: Opt-out in the Danish biobanking
Mette Hartlev, Professor, Faculty of Law, University of Copenhagen
Abstract

Biobank samples and personal data – navigating the legal crossroads of registry research
Elisabeth Rynning, Professor, Faculty of Law, Uppsala University
Abstract        

Council of Europe recommendation on Biobanks. Experiences and reexamination after five years of adoption
Laurence Lwoff, Bioethics Division, Council of Europe, Strasbourg

Is there a need of a wider view of autonomy for biobank based rerearch and what does it then entail, e.g regarding informed consent and ethical review?
Mats G. Hansson, Professor, Centre for Research Ethics & Bioethics, Uppsala University
Abstract

Integrating clinical and research biobanks in the academic setting
Magnús Karl Magnússon, Professor, Faculty of Medicine, University of Iceland

Trust and duty in health care-related biobanks: Are informed consent procedures letting patient-donors down?
Linus Johnsson, MD, PhD Student, Centre for Research Ethics & Bioethics, Uppsala University
Abstract

Investment, engagement and coincidence: multiple meanings of participation in biobanks Karoliina Snell, Researcher, Department of Social Science, University of Helsinki
Abstract

«Living consent» – electronic handling of individual rights for the public goodHeidi Thorstensen, Oslo University Hospital

In defence of the public rights, goals and trust
Angus Dawson, Senior Lecturer, Centre for Professional Ethics, Keele University

Is ethical review of biobank based research up to date?
Simon N. Whitney, Professor, Department of Family and Community Medicine, Baylor College of Medicine, Houston, TX.
Abstract

How to combine information from health registry and biobanks with information collected for research within the university
Göran Elinder, Senior Professor, Karolinska Institutet, Stockholm

Biobank research and the decisions of ethics review boards in Sweden
Joanna Stjernschantz Forsberg, MD, PhD Student, Centre for Research Ethics & Bioethics, Uppsala University
Abstract

Incidental findings and new technologies
Kári Stefánsson, MD, Dr Med, Chairman and CEO, deCODE genetics, Iceland