Duke's Center for the Study of Public Genomics will gather and analyze information about the role of publication, data sharing, materials-sharing, patenting, database protection, and other practices that affect information flow in genomics research and development. Managing intellectual property and ensuring the preservation of a robust """"""""scientific commons"""""""" could prove as difficult as or more so than the science and technology, and could have as large of an impact on what results are produced, who has access to them, and how fairly they are distributed. These are deeply ethical questions, highly dependent on policy decisions in government and the private sector. Intellectual property is new to the ELSI scene, but it is here to stay. The Center will combine qualitative and quantitative research and analysis involving Duke Arts &Sciences, the Medical School, Law School, Fuqua Business School, Sanford Institute for Public Policy, as well as the DNA Patent Database at Georgetown University. The Center builds on structures designed to enable collaborative research at Duke and with external organizations. The Center will bring together economists, legal scholars, molecular biologists, computational biologists, philosophers, English professors, and others. It will combine research training with Center research activity. The pervasiveness, importance, complexity, uncertainty, and persistence of concerns about the role of intellectual property will be addressed in four research projects, supported by four cores. The projects are: 1. case histories, including intellectual property landscapes of seminal genomic technologies and data sharing practices (DNA sequencing and microarray technologies, data-release and data-sharing practices); 2. models of open and collaborative production in genomics research and development; 3. intellectual property protection of databases and alternative regimes to reconcile public science with the commercialization of research results;and 4. empirical analysis of information flow in genomics based on a pilot survey.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
3P50HG003391-05S1
Application #
7903011
Study Section
Special Emphasis Panel (ZHG1-HGR-P (M1))
Program Officer
Mcewen, Jean
Project Start
2004-09-01
Project End
2011-03-31
Budget Start
2008-08-01
Budget End
2011-03-31
Support Year
5
Fiscal Year
2009
Total Cost
$517,044
Indirect Cost
Name
Duke University
Department
Administration
Type
Schools of Arts and Sciences
DUNS #
044387793
City
Durham
State
NC
Country
United States
Zip Code
27705
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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