Center for Public Genomics

Center for Public Genomics (CpG)

The Duke Center for Public Genomics was established in 2004 to explore the value of "open science" norms and practices, as well as to study the benefits and risks of intellectual property protections in genomics, through historical, legal, economic, and empirical research. The Center addresses innovation and intellectual property (IP) as it relates to biomedical research, and specifically, to genomic research. One of our goals is to gather and analyze empirical data to inform the debates over the proper role of IP in genetic research. For example, in the early years of gene patenting, a vigorous debate arose whether gene patenting was necessary to protect investment and thus further innovation, or whether gene patenting was harmful, blocking access to genes and necessary elements of research, and ultimately stifling innovation. Both sides of the debate voiced powerful theoretical analyses, yet use of actual real-world data of the effects of gene patents was almost nonexistent. In the various projects in our Center, we have gathered and analyzed different kinds of data to inform and reshape the nature of the debate. Unsurprisingly, we have found the effect of IP rules on research to be much more complicated that the polarized debate has suggested, and our policy engagement efforts have involved working to get both our data and our analyses to the right policy makers.

CpG 1.0 (2004-2009): In its first five years, the CpG produced a fascinating picture of the problems and opportunities created by the intersection of genomic research and intellectual property rights; in many ways, our understanding was transformed.  Some issues that consumed considerable academic and popular attention were revealed to be less problematic than had been assumed, while others—though neglected in scholarly and policy debates—turned out to be considerably more serious.  An interdisciplinary study of the innovation process—ranging from case studies and legal analysis, to empirical research on science practice and commercialization—revealed much of interest to both scholars and policy makers about the ways that legal rights and institutional arrangements affect innovation.

CpG 2.0 (2010-2015): During its next five years, the Center will comprise five mutually dependent research projects, and will continue to be a center for research and scholarship on innovation in genomics, with specific attention to the role of intellectual property.

CpG 1.0 (2004-2009) Research Projects

• "Case Histories": This project explores how intellectual property (IP) rules and sharing norms have played a role in the development and dissemination of seminal genomic technologies, and how IP rules affect patient access to genetic testing.
• "Open Source Studies": This project explores, both empirically and analytically, the desirability and feasibility of different models of open and collaborative production in genomics research and development.
• "Liability Rules": This project explores alternatives to the current intellectual property regime in genomics, and whether liability rules might achieve the intended aims of current patent, copyright, and database protection rights, while avoiding the problems of exclusive rights frameworks.

CpG 2.0 (2010-2015) Research Projects

• "Genomics as Information": The goal of this project is to identify and analyze intellectual property challenges raised as genomic research becomes increasingly based on pure information ("genomics as information"), and to recommend policy responses to address current or anticipated problems.
• "Overcoming Obstacles to Research": The goal of this project is to identify obstacles to scientific research created by intellectual property (IP) rights, and to explore ways to overcome these obstacles – not by reforming IP law, but by using existing legal frameworks in innovative ways.
• "DNA Sequencing": This project will study the history of genomic sequencing technologies—the core technologies at the heart of genomics, and will examine how existing DNA patents affect applications of full-genome sequence analysis in clinical care and personal genomics, and to recommend policy responses to address current or anticipated problems.
• "Nonprofit Personal Genomics": This project will describe how human personal genomic data and trait information are being aggregated, interpreted and disseminated in and by the nonprofit sector in order to understand possible successful alternative frameworks for innovation.
• "Economic Model for Research Sharing": This project will apply an economic approach to analyzing the behavior of individual scientists to better understand the factors that affect the flow of knowledge, materials and other research inputs among biomedical scientists, and to inform policies intended to increase the efficiency of scientific discovery by inducing scientists to more readily share data and materials.

The Center for Public Genomics is a Center of Excellence in Ethical, Legal, and Social Implications (ELSI) Research co-funded by the Department of Energy and the National Human Genome Research Institute, part of the National Institutes of Health.