The Duke Center for Public Genomics was 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, from 2004 to 2015. The Center was established 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 addressed innovation and intellectual property (IP) as it relates to biomedical and genomic research. One of our goals was to gather and analyze empirical data to inform the debates over the proper role of IP in genetic research. Unsurprisingly, we found the effect of IP rules on research to be much more complicated than the polarized debates suggested, and our policy engagement efforts involved working to get both our data and our analyses to the right policy makers.

Research files and other materials can be found at the Duke Library Archives:
http://dukespace.lib.duke.edu/dspace/handle/10161/7406.

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 IP 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 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.

  • Case Histories: This project explored how 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 explored, 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 explored alternatives to the current IP 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): During its next five years, the Center comprised five mutually dependent research projects and continued to be a center for research and scholarship on innovation in genomics, with specific attention to the role of IP.

  • Genomics as Information: The goal of this project was to identify and analyze IP challenges raised as genomic research becomes increasingly based on pure information and to recommend policy responses to address current or anticipated problems.
  • Overcoming Obstacles to Research: The goal of this project was to identify obstacles to scientific research created by IP rights, and explored ways to overcome these obstacles – not by reforming IP law, but by using existing legal frameworks in innovative ways.
  • DNA Sequencing: This project studied the history of genomic sequencing technologies—the core technologies at the heart of genomics, and examined how existing DNA patents affect applications of full-genome sequence analysis in clinical care and personal genomics, and recommended policy responses to address current or anticipated problems.
  • Nonprofit Personal Genomics: This project described how human personal genomic data and trait information were 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 applied 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 informed policies intended to increase the efficiency of scientific discovery by inducing scientists to more readily share data and materials.

For further information about the Center: