Premises for Clinical Genetics Data Governance: Grappling with Diverse Value Logics

Abstract

This chapter discusses emerging tensions related to data ownership and sharing in global genetic data repositories, accessed by researchers and clinicians, from both public and private institutions. We describe the on-going controversies around collecting and sharing genetic mutation data on the BRCA1 and BRCA2 genes: the creation of the Breast Information Core (BIC) database in 1995, the decision by Myriad Genetics to stop sharing information in 2004, the subsequent reaction from the community through the “Sharing Clinical Reports Project” and “Free the Data” initiatives and the recent creation of the open ClinVar repository and the public-private BRCA Share resource. We analyse these experiences, elaborate on the unique characteristics of BRCA data and identify different logics shaping the field. Based on this analysis we suggest drawing from the literature on collective action and the governance of commons for addressing the multiplicity of logics identified. We conclude by discussing the usefulness of foregrounding fundamental questions related to equity, efficiency and sustainability for shaping and evaluating governance arrangements in the field.