Abstract

The work of CpG 1.0 clarified the current range of issues facing genomic science. In examining issues ranging from exclusive licensing, to academic research practices in """"""""open source"""""""" projects and the effect of patents on diagnostics, it showed a very different pattern than that predicted by the received wisdom. Some issues were not as problematic as had been perceived, while other problems in the research process had evaded attention. In focusing on the future of genomics as information. Project 1 moves beyond this established base to deal with emerging problems that could threaten some of our most promising new technologies. The empirical analysis and comparative study to the IT industries provided by this theme should yield vital insights to both scholars and policy makers.

  Funding Agency

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003391-09
Application #
8661775
Study Section
Special Emphasis Panel (ZHG1)
Project Start
Project End
Budget Start
2014-04-01
Budget End
2015-03-31
Support Year
9
Fiscal Year
2014
Total Cost
Indirect Cost

  Institution

Name
Duke University
Department
Type
DUNS #
City
Durham
State
NC
Country
United States
Zip Code
27705

  Publications

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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