Duke receives grant for genome policy research

In an effort to address some of the most pressing ethical, legal and social questions that have developed along with recent advances in genetic and genome science, the National Human Genome Research Institute, part of the National Institutes of Health, has awarded the University a $4.8 million grant to establish the Center for Public Genomics.

Led by Public Policy Research Professor Robert Cook-Deegan, the Center, a subsidiary of the Institute for Genome Sciences and Policy, will also incorporate multidisciplinary efforts from the Duke School of Law, the Fuqua School of Business, the Sanford Institute for Public Policy and Georgetown University.

“We are in a deadlock, and NIH clearly recognizes the importance of doing a study of [public genomics] from top to bottom,” said Jerry Reichman, a professor in the School of Law.

As one of the four initial centers of this kind established throughout the nation, the Center for Public Genomics will concentrate on clarifying how genetic technology development works, including the role of intellectual property and the patent system. Its goal is to eventually prepare reports that will influence those who regulate information flow and distribution in the United States and abroad.

“We are most certainly the biggest national center and probably equal to any international one studying [public genomics],” said Cook-Deegan, who also authored Gene Wars. “We are going to be a big player in this debate.”

The Center’s leaders have concentrated their plan of action in several areas. First, the law and business schools will work together to study an alternative to the current patent system. Tracy Lewis, a professor in Fuqua, and Reichman will continue their work to develop a softer system for protecting intellectual property. Currently, legal blocks are placed on patented information, requiring others to seek permission to use or buy it and inhibiting the accessibility of information and new scientific discoveries that make use of patented technology.

“These new ‘Liability Rules’ we’re working on will be better for society,” Reichman said. “It’s kind of a use now, pay later system.”

Their aim is for private groups to be able to adopt these new regulations without needing any additional government intervention and to promote a national pact among universities and other research institutions. This will enable scientists to carry on their genomic research without worrying about violating any patent laws.

“The transaction costs are just too high. The scientific community is struggling to oppose such strong protections of databases in the U.S. and especially in Europe,” Reichman said.

Additionally, Law Professor Dr. Arti Rai will be directing the open source project, which will focus on the sharing of information protected by patents, copyrights and trademarks. Cook-Deegan will be involved in the analysis of the history of DNA sequencing, microarray technology and how this information is shared.

University scientists in IGSP will provide direct access to the heart of the scientific issues. “It will give the project a real live context to have all these scientists on board,” said Joseph Nevins, James B. Duke professor and investigator of molecular genetics and microbiology. “We know the scientific and clinical applications of genetic research.”

Another component of the Center’s mission is for collaborators at Georgetown University to update a database that currently holds all 35,000 U.S. patents for anything DNA and RNA-related.

Duke was chosen over Case Western Reserve University, Stanford University and the University of Washington to receive this grant because of the unusual strengths of its professors, available resources and ability to easily create interdisciplinary research teams.

“While Duke was late to the genome game, its national contribution now is seen as distinctive, and the Center for Genome Ethics, Law and Policy is one of the defining elements of that distinctiveness,” said Huntington Willard, director of IGSP. “In short? No one else but Duke could do this project.”

Members of the Center agree on the expert leadership of this team. “ [Cook-Deegan is] a gem and he’s one of the key reasons the IGSP is successful here,” Willard said. “I can’t think of anyone in this country who might be his peer for a project like this. His energy, his scholarly passion for the topic and his highest standards of academic and collegial conduct make him simply ideal. Period.”

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