TASK FORCE ANNUAL REPORT

In January a new workgroup was established to take a closer look at the ethical, legal and social issues that might arise with the advent of genomic medicine. The Ethics and Policy Workgroup was sponsored by generous contributions from the NC Biotechnology Center and lead by Jim Thomas, UNC, School of Public Health. State legislators were considered the primary audience for the work groups advocacy efforts. The group developed a list of primary issue questions that legislators should ask when considering human genomic legislation. These questions will be placed on a easy to follow guide and distributed to legislators in the coming session.

The Task Force met on January 21, May 19 and September 29. Each meeting featured a plenary presentation by an expert, with a focus on bringing new information and research from across the state to partners. The following presentations were on the 2004 agenda.

Workgroup activities continued to play a central role in the Task Force. Unveiling their action plans in the first meeting, workgroups met throughout the year, and diligently worked toward completing recommendations previously made in the State Plan. What is particularly notable is that despite limited funding, workgroups were able to make considerable progress in developing education projects and policy development.

A logo was unveiled at the May meeting, and will assist in giving the general public a recognizable symbol for Task Force-related publications and activities.

2004 marked the establishment of a Task Force newsletter. Titled NC Genomic News, the quarterly publication was delivered in an email format, and kept partners informed of  upcoming events, shared research publications and provided lists of genomic resources.

The Future Directions Workgroup spear-headed the authorship of two position papers. The first was a response to NC House-sponsored Bill 1256, which called for the establishment of a voluntary DNA database and accompanying databank. Delivered to the bill’s sponsor and the NC Senate Committee on Health and Human Services, the paper’s recommendations educated policymakers about the primary issues surrounding DNA banks. A second paper made recommendations to State Health Director, Dr. Leah Devlin on the possible risks and concerns of storing and utilizing leftover newborn dried blood spots . The paper’s comments were delivered to the Newborn Screening Advisory Committee in December, and dialog with this committee will continue in the coming year.

The much-anticipated web site was completed, and can currently be found at http://statgen.ncsu.edu/ggibson/nc_gph/ . The permanent web site will be located at http://www.communityhealth.dhhs.state.nc.us
/Genomics/genomics.htm . Currently the site summarizes the activities of the Task Force and has a copy of the State Plan, which can be downloaded. Updates will be added to the web page continuously.

Several activities in 2004 focused on increasing genomic competency among healthcare professionals, as genetic discoveries are already making their way into mainstream healthcare, and patients are beginning to ask providers about genetic services. Training presentations were made to public health nurses across the state and program coordinators for the NC Comprehensive Breast and Cervical Cancer Control Coalition. Over 500 healthcare professionals were trained in this program.