PARTNER HAPPENINGS

The Duke Institute for Genome Sciences & Policy’s Center for Genome Ethics, Law and Policy (GELP) has been awarded a 5-year, $5 million grant from the National Institutes of Health and the Department of Energy to establish a Center of Excellence in Ethical, Legal, and Social Implications Research.   Duke’s new center will be known as the Center for the Study of Public Genomics (CpG), and will focus on understanding the value of “open science” norms and practices, as well as the benefits and risks of intellectual property protections in genomics. In addition to the three research projects, the Center for Public Genomics will contain three “cores” to provide coordination and support to the projects.  

Core 1 , Management and Organization, will be led by Bob Cook-Deegan, (PI), and will provide overall management for the Center, administrative support, communication and coordination of work.   This includes an annual gathering of a national advisory committee

Core 2 , Analytical Resources and Linkage to Duke Genomics Science, will be led by Hunting Willard, and will provide the Center for Public Genomics access to relevant genomic databases, personnel, genomic technologies, and other resources. This core will maintain several unique data sets, including a table of government and nonprofit genomics research funding sources, and a list of genomics firms, including data on R&D expenditure and market valuation.  

Core 3 , DNA Patent Database, will be led by LeRoy Walters, Kennedy Institute of Ethics, Georgetown University. Core 3 will maintain and expand the DNA Patent Database, as well as explore the feasibility of developing parallel databases culled from European, Japanese, African, and other patent databases.   The database makes available to researchers, the public, and policy-makers information that is otherwise available only to large pharmaceutical and biotechnology companies and to patent law firms.   The DNA Patent Database will be available for outside scholars to use for their own analyses.   In addition to providing a research resource, investigators from this core will pursue research about ownership of, licensing of, and use of DNA-based patents.

Greg Gibson, NCSU Genome Research Laboratory and Task Force Chair was a October 13th guest on NC Now, North Carolina public television’s nightly state news program. As Task Force Chair, Greg summarized information contained in the NC State Plan, the Task Force and current strategies for bringing North Carolinians into the genomic age.  

Donna Spoon, Task Force Coordinator traveled to Washington, DC on October 7-8 to attend a National Academy of Sciences, Institute of Medicine-sponsored symposium entitled “Implications of Genomics for Public Health”. Speakers were challenged to outline the key components and challenges for Public Health leaders in effectively integrating the avalanche of genomic information.   Keynote speaker, Dr. Gilbert Omenn of the University of Michigan urged policy leaders to avoid “genetic exceptionalism” by integrating genetic tools into existing health, social, and environmental policies, rather than establishing stand-alone genetics programs.   Several key steps were identified by symposium speakers as critical to achieve true genetic integration into public health including:

• Strengthen the public health infrastructure to accommodate genetics developments especially in epidemiology, chronic diseases, infectious diseases, and occupational health,
• Implement competency training for all health professionals in genetics,
• Place one state agency in charge of handling reports of genetic discrimination or privacy breaches,
• Involve community partners in all program and policy development stages, including insurers, employers, consumer groups, and health professionals,
• Help state universities expand genetics education and training,
• Require that genetic services financed by the state be valid, reliable, and useful.

The Mountain Area Health Education Center will sponsor its 2 nd Annual Genetics Conference in Asheville on November 4.   Targeting nurses, the conference will provide practical information that nurses can integrate into everyday practice. Andrew Faucett, MS, with the CDC in Atlanta will open the conference with a keynote address on documenting and applying family history information. Other national experts will present the latest information available on such topics as pharmacogenomics, dysmorphology, genetics of mental illness and ethical issues in genetics.   Task Force partner Leslie Evans, Fullerton Genetics Center is a featured speaker.