Overall goals: The Management and Organization Core will be administered by the Center for Genome Ethics, Law, and Policy (GELP) of Duke's Institute for Genome Sciences and Policy (IGSP). Dr. Cook-Deegan will be responsible for overall management, organization, and budget. GELP administrative staff will take primary responsibility for logistics of meetings among investigators, coordination of meetings and symposia, travel, and budget preparation. This core will convene an annual retreat of investigators and consultants engaged with the Center, as well as an annual symposium. The purpose of the retreats will be to decide discuss research, form collaborations, and decide research directions. They will include investigators, consultants, and staff in a closed-door meeting. The annual symposia will be public meetings for education and presentation of results. The proposed center will include six research projects, each directed by an internationally recognized expert, and each primarily based in a particular administrative unit (Projects 1 and 2 in the Law School, Projects 3, 4 &5 in IGSP, and Project 6 in Duke's Fuqua School of Business). The Duke cores are based in IGSP, with subcontracts to Johns Hopkins'GPPC (Policy Engagement Core), and to Georgetown (Genomics and Policy Resource Core). Salaries of Duke personnel are paid through the school or Institute in which the person has primary responsibility. Most of the active management of resources that regularly change over the course of a year are now managed out the Management and Organization Core. We have formal agreements for major decisions. When a postdoc is working with a unit for a particular purpose or for a long time, such as Wayne Beyer's current work with the Chordoma Foundation, we create an accounting trail and write a formal agreement. Each new postdoc research assistant and other new member of the team is given a letter with specific expectations. When consultants become active coauthors or engage in other extended work, we generally set a cap on number of days, which can be renegotiated. We discuss major annual expenditures such as workshops and symposia and the annual retreat in monthly """"""""all CpG investigator"""""""" meetings during the academic year. Each year, we have held the promised events, and it has been easy to accommodate proposed workshops, RA requests, travel, consultants, and other allocations because the decisions are made jointly.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Specialized Center (P50)
Project #
Application #
Study Section
Special Emphasis Panel (ZHG1-HGR-P)
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Duke University
United States
Zip Code
Thorogood, Adrian; Cook-Deegan, Robert; Knoppers, Bartha Maria (2017) Public variant databases: liability? Genet Med 19:838-841
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
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

Showing the most recent 10 out of 100 publications