3034.0 Translational Research in Genomics and Community Health Education

Monday, October 31, 2011: 8:30 AM
In order to have the greatest impact on improving health and preventing disease, advances in genomics must be translated into clinical practice and community interventions in ethically, legally, and socially responsible ways. This session will explore the successes and challenges of a variety of programs working to address populations who have already received a genetic or metabolic diagnosis and those who may be in the process of establishing their own risk. One striking aspect of genomic medicine relates to the relevance of a genetic diagnosis for a person’s family members’ health, and this is particularly true of cardiogenetics. Our first speaker will discuss the creation of a program to address the needs of families and the results from their qualitative research examining the impact of these diagnoses on the family. Access to medical records on a patient in an emergency situation is important for everyone, but this is especially true of children with special health care needs. Our second speaker will relay information about a program that has created a portable health care record for children with a genetic or metabolic condition through partnership of healthcare professionals and family advocates. Another aspect of advancing genomic medicine involves examination of the impact of direct-to-consumer testing. Our third speaker reports on a survey of three DTC company’s clients, including their understanding of their risks and their satisfaction with the services. Finally, we will hear about a program, GEDDI, working to analyze and initiate efforts at translating genomic information into early disease detection and intervention. The speaker will report on discussions surrounding genetic disease screening throughout the lifecycle and future plans for addressing gaps in infrastructure needed for implementation.
Session Objectives: •Explain the impact of a cardiogenetic diagnosis on at-risk relatives’ views of their own health and need for testing. •Discuss the importance of a portable health record for children with a genetic or metabolic disorder, including its key features. •Describe the impact of direct-to-consumer testing on customers’ perception of their risk for disease.

9:00 AM
Direct from consumers: A survey of customers of three direct-to-consumer personal genomic testing companies
David Kaufman, PhD, Juli Bollinger, MS, Rachel Dvoskin, PhD and Joan Scott, MS, CGG
9:15 AM
Genetics for Early Disease Detection and Intervention (GEDDI)
James O'Leary, BS, Amanda Field, MPH and Sharon F. Terry, MA

See individual abstracts for presenting author's disclosure statement and author's information.

Organized by: Genomics Forum
Endorsed by: Ethics SPIG

CE Credits: Medical (CME), Health Education (CHES), Nursing (CNE), Public Health (CPH) , Masters Certified Health Education Specialist (MCHES)

See more of: Genomics Forum