The Perils of Taking Property Too Far

Abstract

Many policies governing biobanks revolve around ownership and control of the materials and information in them. Those who manage biobanks may be tempted to seek the broadest legal rights possible over material and data. However, we suggest that even if ownership and control were clearly defined by the law and readily obtained by biobanks, how legal rights are used in practice matters as much or more than the rules for ownership. We draw lessons from the stories of genetic testing for Canavan disease and inherited breast and ovarian cancers. In both cases, the use or assertion of legal rights led to preventable controversy and suboptimal outcomes. The attempt to acquire and exercise intellectual property rights antagonized and alienated stakeholders, whom we define broadly to include the donors, patients, doctors, research institutions, health care providers, governments, and citizens with an interest in research and its outcomes. By analogy, even if biobanks could acquire expansive and clear property rights over materials and data, biobanks that want to maintain productive relationships with stakeholders must not lose the trust of those who contribute material or others with an interest in research.

Keywords: biobank, biobanks, genetic testing, genomic testing, Canavan, Myriad, BRCA, research ethics, gene patents, genes, patents, ethics, business models, public health care, clinicial genetics