A Lens for Evaluating Genetic Information Governance Models: Balancing Equity, Efficiency and Sustainability

Stud Health Technol Inform. 2017:235:298-302.

Abstract

This paper draws from the literature on collective action and the governance of the commons to address the governance of genetic data on variants of specific genes. Specifically, the data arrangements under study relate to the BRCA genes (BRCA1 and BRCA2) which are linked to breast and ovarian cancer. These data are stored in global genetic data repositories and accessed by researchers and clinicians, from both public and private institutions. The current BRCA data arrangements are fragmented and politicized as there are multiple tensions around data ownership and sharing. Three key principles are proposed for forming and evaluating data governance arrangements in the field. These principles are: equity, efficiency and sustainability.

Keywords: Genetic information; governance; the commons.

MeSH terms

  • BRCA1 Protein / genetics
  • BRCA2 Protein / genetics
  • Breast Neoplasms / genetics
  • Databases, Genetic / ethics*
  • Databases, Genetic / legislation & jurisprudence*
  • Female
  • Genetic Predisposition to Disease
  • Health Equity
  • Humans
  • Ovarian Neoplasms / genetics
  • Social Responsibility

Substances

  • BRCA1 Protein
  • BRCA1 protein, human
  • BRCA2 Protein
  • BRCA2 protein, human