At the annual meeting of the National Coalition of Health Professional Education in Genetics on Sep. 4, President & CEO Sharon Terry offered the lunch keynote address: "Genetic Information Nondiscrimination Act: An Overview" to an audience of healthcare providers, researchers and advocates. Amelia Chappelle, Associate Director of Genetics Resources and Services, and Vaughn Edelson, Program Coordinator, presented posters on the Access to Credible Genetics Resources Network and Community Centered Family Health History projects, respectively.
On Sep. 9, the Broad Institute in Boston held a Genomics of Common Diseases meeting, organized by Nature Genetics in association with The Wellcome Trust. Sharon spoke about "Consuming Genomic Information", and participated in a panel with George Church and Kari Stefansson.
On Sep. 19, at the 27th Annual Lab Institute Meeting in Washington, DC, Sharon presented a talk entitled: "Has Genetic Testing Reached a Tipping Point for Labs?" The other presenters included Knome and CMS, and a lively discussion explored topics from Direct to Consumer genetic testing to value based pricing.
Amelia presented on DTC to students in the Sarah Lawrence College Genomics Certificate Program in Bronxville, NY on Sep. 25.
Oct. 24-28, Genetic Alliance and the National Society of Genetic Counselors teamed up to host the third annual Partnership Program at NSGC's meeting.
Oct. 27 at the American Public Health Association annual meeting, James O'Leary, Chief Operating Officer, and Vaughn presented a panel on community-based family health history projects with four CCFHH partners: Institute for Cultural Partnerships, National Council of La Raza, National Psoriasis Foundation, and Seattle Indian Health Board.
At the Newborn Screening and Genetic Testing Symposium hosted by the Association of Public Health Laboratories Nov. 1-7, Natasha Bonhomme, Director of Strategic Development, spoke during the patient perspective panel about the Consumer Focused Newborn Screening projects, which are surveying 2,000 women nationwide to understand the public's perspective on newborn screening. She also discussed the importance of incorporating consumers throughout the research process.
Nov. 11-15, ten Genetic Alliance staff and Council members participated in the annual American Society of Human Genetics meeting in Philadelphia, PA. GA and ASHG hosted the fourth annual ASHG Advocates Partnership Program.
Building on her experience curating the ABCC6 variations, Sharon presented "Why Disease Advocacy Organizations make Excellent Curators of Locus-specific Variation" at the meeting of the Human Variome Project in Philadelphia, PA on Nov.10.
Genetic Alliance is working with Private Access to provide a novel solution to privacy issues surrounding cohort development. On Nov. 13, 2008, Sharon spoke to a leaders forum at the Association of Clinical Research Organizations roundtable in Pentagon City.
On Dec. 1, Vaughn shared a CCFHH poster with international attendees at a conference in Havana, Cuba, Medical Education for the 21st Century: Teaching for Health Equity.