Biobanks as Knowledge Institutions – University of Copenhagen

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Biobanks as Knowledge Institutions

“Global Genes –Local Concerns” Seminar with Prof. Michael Madison (University of Pittsburgh, U.S.) and Associate professor Aaro Tupasela, University of Copenhagen.

When?: Friday, November 3rd, 2017 from 16:00 – 18:00
Where?: Faculty of Law, Meeting box (the “floating” meeting room), 2nd floor, room 7A-2-04, Njalsgade 76, DK-2300 Copenhagen S
Registration: Please use this registration form before October 26th at 2 pm (limited space available)
Organizer: Timo Minssen (Timo.Minssen@jur.ku.dk) & the Global Genes – Local Concerns project in cooperation with Copenhagen Biotech & Pharma Forum (CBPF) at Centre for Information & Innovation Law (CIIR)

Programme

16:00 - 16:10 Introduction to seminar
Prof. Timo Minssen
16:10 - 16:45 “Biobank as knowledge resources”, questions included
Prof. Michael Madison
16:45 - 17:00 Break with refreshments
17:00 - 17:35 “The Politics of Sample Sharing in European Biomedical Research Networks”, questions included
Associate professor Aaro Tupasela
17:35 - 18:00 Panel discussion & Mingle

“Biobank as knowledge resources”, questions included

The presentation characterizes the material and immaterial attributes of biobanks as knowledge resources, and it characterizes the broader questions that they pose as resource governance questions rather than as questions solely of law or of public policy. Biobanks are knowledge institutions. Professor Madison argues that despite the varied and diverse nature of biobanks today (indeed, precisely because of their diversity), their social and scientific importance dictates the need for a robust program of research of a comparative nature to identify shared features that contribute to their success (where they succeed) and features that likely contribute to problems or even failure. Both their importance and the associated governance challenges have only grown larger and more complex as biobanks meet the era of data science. In that regard Professor Madison points to emerging scholarly literature that focuses on governance challenges of material and data in biobank contexts, which builds on a knowledge commons governance framework. He concludes by suggesting directions for future work.

The Politics of Sample Sharing in European Biomedical Research Networks

During the past decade, discussions surrounding the governance of biobanks and the data derived from them has become a major political preoccupation. Biobanks and the data derived from them have been seen as an important component of the so-called knowledge-based bio-economy (KBBE). Most recently, the role of biobanks in generating big data, supporting personalized medicine, as well as facilitating new artificial intelligence (AI) platforms has been highlighted as only some of the new possibilities which are emerging. Many of these approaches, however, see data and samples as ‘neutral’, detached from their source and custodians, as well as devoid of context in which they have been created, collected, stored, shared, and utilized.

In this talk I will focus on a phenomena called ‘data hugging’ as an example which many policy makers and researchers see as problematic, but which I would like to suggest is useful and indeed central to the efficient functioning of biobanks and the data derived from them. I will suggest that without care and custodianship for samples and data, data loses an important connection to the local and situated meanings and functions in which it was originally created. This approach provides important insight to legal scholars working in data regulation and governance since it highlights to social attachments and significance that samples and data carry with them, as opposed to their functional role alone.

Speaker Biography


Michael Madison

Professor Michael Madison is Professor of Law, John E. Murray Faculty Scholar, and Faculty Director of the Innovation Practice Institute at the University of Pittsburgh School of Law. He writes and teaches about intellectual property law and policy, and about questions concerning the production and distribution of knowledge and innovation. He is the author of more than 40 journal articles and book chapters, the co-author of The Law of Intellectual Property (Wolters Kluwer, 5th edition 2017), and the co-editor of Governing Knowledge Commons (Oxford University Press, 2014) and Governing Medical Knowledge Commons (Cambridge University Press, forthcoming 2017).

Professor Madison is the co-founder of the global research network titled the Workshop on Governing Knowledge Commons and was elected to membership in the American Law Institute in 2016. His research and scholarship address the emerging discipline of knowledge commons, governance of innovation institutions, and knowledge as a subject of legal regulation. Within copyright law, his expertise focuses on the law of fair use and the character of copyright works. He has taught courses including various disciplines of intellectual property law, contracts and commercial law, and property law.  Professor Madison joined the Pitt Law faculty in 1998. Before becoming a law professor, Professor Madison practiced law in San Francisco and Silicon Valley for nine years. He received his JD from Stanford University and his BA from Yale.

Aaro Tupasela

Aaro Tupasela (b. 1972, DSocSc 2008) is a sociologist specialized in science and technology studies (STS). He works as an Associate professor of ethical, legal and social aspects of biobanking at the Department of Public Health at University of Copenhagen. He is a board member and former chair of the European Sociological Association’s Sociology of Science and Technology Network (SSTNET), and also served as a member of the Nordic Committee on Bioethics for six years.