Abstract

DNA sequencing is arguably the core technology at the heart of genomics. The idea of having a reference sequence of the human genome grew out of the Sanger-Coulson and Maxam-Gilbert sequencing technologies developed in the 1970s.[62] The history of DNA sequencing is of considerable interest in its own right. That history is also important to understand the academic-industrial-government ecosystem in which genomics takes place, and to inform policy choices about future genomic technologies. This Project will carry forward the work started in CpG 1.0 on DNA sequencing technologies and norms of sharing data that took root in different subfields of genomics. It will then look ahead to full-genome sequence analysis of individuals as it gets faster, cheaper, and more widely used in both clinical medicine and personal genomics. A central question is whether the use of DNA sequencing technology might be constrained by existing DNA patents. This Project will draw on the legal scholarship in Projects 1 and 2 (Rai, Reichman), with implications for Project 6 (Angrist).

  Funding Agency

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003391-09
Application #
8661776
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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