The Challenges of Achieving Open Source Sharing of Biobank Data

Abstract

Several recent biomedical research initiatives have sought to make their data freely accessible to others, so as 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 organized collections of biological samples and corresponding data, often created for the use of investigators who are not affiliated with the biobank, 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 will examine each of these challenges to implementation of an open source biotechnology model, and consider an alternative approach, “fair access” biobanks.

Keywords: open source, biotechnology, genomics, tissue bank, biobank

JEL Classification: K10, K11, K39