Project Summary: Patient and family groups (PFGs) have long supported rare disease research as fundraisers and advisers. But today, they increasingly drive the research agenda, working in partnership with academic institutions, drug developers, and regulators to shepherd new therapies from basic research to commercialization.
Robert Cook-Deegan was the Principal Investigator of The Duke Center for the Study of Public Genomics. This center assembled a team to gather and analyze information about the role of publication, data and materials sharing, patenting, database protection and other practices that may affect the flow of information in genomics research. The center operated from 2004 - 2015.
Intellectual property rights, such as patents, award inventors a temporary (generally 20-year) right to exclude others from making, using, selling, or importing their invention. They are granted to individuals and institutions by governments to encourage public disclosure of their inventions, and as an incentive to invent. Disclosure is thought to stimulate both follow-on research and, in some cases, public benefit.
