Duke University's Center for Public Genomics (CpG) was established in 2004 to study two important aspects of genomics research: intellectual property (IP), and norms and practices of sharing data and materials. The Center embraces legal scholarship, economic and business theory, empirical social science, history, philosophy, and literary studies. Specific projects analyze the role of various kinds of IP and the ways that legal rules and practices in business and in science affect genomics and its applications. One theme is the value of a scientific commons ~ information and technologies that are placed in public databases, published in the open literature, or widely shared at low cost. CpG research is intended to inform policies to promote wide use of valuable information while preserving incentives to create information and invent new technologies. CpG 2.0 will extend the first five years of research. It will turn to how IP law treats genomic information, how IP can promote or impede genomics, and how existing patents might affect science and genetic diagnostics in an era of ubiquitous full-sequence genomic analysis. CpG 2.0 will also study how IP is cropping up in surprising places. It will probe more deeply into how and why patents were important in the story of BiDil, the first drug that FDA approved for use in a racial subpopulation. Genomics has also sometimes flared into controversy when it involves US tribes, Canadian First Nations, and populations in Africa. CpG will collaborate with others addressing these issues, studying how IP can provoke conflict but may also be a tool for sharing benefits. CpG aspires not only to do the highest quality research, but also to make its research available to those making policy decisions in useful form. CpG 2.0 includes two cores based in Washington, DC: a Genomic Policy Resource that includes the DNA Patent Database (Georgetown University) and a policy engagement core at the Genetics and Public Policy Center (Johns Hopkins University).

Public Health Relevance

This grant investigates how intellectual property rights affect scientific research, sharing of information and materials, and development of genomic products. Research results will help policymakers alter laws to promote science and innovation, and help scientists create sharing practices that will improve their access to the resources they need. The results will help public health because advances in genomic sciences can be made more rapidly and with reduced costs.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Specialized Center (P50)
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Special Emphasis Panel (ZHG1-HGR-P (J1))
Program Officer
Mcewen, Jean
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Duke University
Schools of Arts and Sciences
United States
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Cook-Deegan, Robert; Ankeny, Rachel A; Maxson Jones, Kathryn (2017) Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance. Annu Rev Genomics Hum Genet 18:389-415
Cook-Deegan, Robert; McGuire, Amy L (2017) Moving beyond Bermuda: sharing data to build a medical information commons. Genome Res 27:897-901
Thorogood, Adrian; Cook-Deegan, Robert; Knoppers, Bartha Maria (2017) Public variant databases: liability? Genet Med 19:838-841
Cook-Deegan, Robert; Vishnubhakat, Saurabh; Bubela, Tania (2016) The mouse that trolled (again). J Law Biosci 3:185-191
Michie, Marsha; Kraft, Stephanie A; Minear, Mollie A et al. (2016) Informed decision-making about prenatal cfDNA screening: An assessment of written materials. Ethics Med Public Health 2:362-371
Meredith, Stephanie; Kaposy, Christopher; Miller, Victoria J et al. (2016) Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States. Prenat Diagn 36:714-9
Bubela, Tania; Vishnubhakat, Saurabh; Cook-Deegan, Robert (2015) The Mouse That Trolled: The Long and Tortuous History of a Gene Mutation Patent That Became an Expensive Impediment to Alzheimer's Research. J Law Biosci 2:213-262
Angrist, M; Jamal, L (2015) Living laboratory: whole-genome sequencing as a learning healthcare enterprise. Clin Genet 87:311-8
Katsanis, Sara Huston; Minear, Mollie A; Vorderstrasse, Allison et al. (2015) Perspectives on genetic and genomic technologies in an academic medical center: the duke experience. J Pers Med 5:67-82
Fernandez, Conrad V; O'Rourke, P Pearl; Beskow, Laura M (2015) Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families. J Law Med Ethics 43:514-22

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