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The Challenges of Achieving Open Source Sharing of Biobank Data

  • Donna M. GitterEmail author
Chapter

Abstract

Several recent biomedical research initiatives have sought to make their data freely accessible to others to stimulate innovation. Many of these initiatives have adopted the “open source” model that has achieved prominence in the computing industry. With respect to genomics research, open access models of data release have become common and most large funding bodies now require researchers to deposit their data in centralized repositories. In particular, biobanks, which are organised collections of biological samples and corresponding data, benefit from the implementation of open source principles. Several obstacles loom, however, as barriers to widespread implementation of open source principles in the field of biomedical research. These include the reluctance among researchers to share their data; the challenge of crafting appropriate publication and intellectual property policies; the difficulties in affording informed consent, privacy, and confidentiality to research participants when data is shared so widely; controversy surrounding the issues of commercialization and benefit-sharing; and the complexity of establishing a suitable infrastructure. This article examines each of these and considers an alternative approach, “fair access” biobanks.

Keywords

Research Participant Supra Note International HapMap Project Fair Access Data Obtain 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Acknowledgements

I wish to thank my host Professor Umberto Izzo and the entire Law and Technology Research Group, Department of Legal Sciences at the University of Trento in Italy for inviting me to contribute this work to their May 2010 conference on “Comparative Issues in the Governance of Research Biobanks: Property, Privacy, Intellectual Property, and the Role of Technology.” This work also benefited from the comments of participants at the 2010 International Data Sharing Conference at the University of Oxford, Centre for Health, Law and Emerging Technologies, as well as the 2010 Intellectual Property Scholars Roundtable at the Intellectual Property Law Center, Drake University Law School in Des Moines, Iowa. Professor Robert Bohrer of California Western School of Law in particular contributed valuable suggestions. Thanks are also due to Professor Jason Mazzone of Brooklyn Law School, who invited me to present this work to his intellectual property law seminar. This work originally appeared in Biotechnology Law Report, December 2010, Vol. 29, No. 6:623–635.

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Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  1. 1.Faculty of LawBaruch CollegeNew YorkUSA

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