Oral

Many public-health related fields struggle to address health disparities, and the emerging field of genomics is no exception. The value of genome-related information is undermined if specific populations are unable to access reliable, understandable information or the healthcare services they need. This session examines the problem of healthcare disparities within the context of genetics. Barriers to adequate services can be concrete, such as the geographical separation of a population from available sub-specialists in Hawaii and Guam. Complex language and high grade level readability for information from direct to consumer genetic testing companies can lead to inadequately informed consumers. The inclusion of minorities, such as African Americans, in research is also critical if the entire U.S. population is to benefit from advances in genomics. Finally, the importance of exploration of a minority’s understanding of genetics is underscored by a presentation discussing the impact of Korean-Americans’ concept of “matching” on their willingness to be enrolled in the National Marrow Donor Program.

Session Objectives: 1.Identify ways in which genetic knowledge and concerns regarding genetic information may influence minority recruitment and retention into research and health-related programs, such as the National Marrow Donor Registry. 2.Identify difficulties and costs of providing clinical genetic and newborn screening follow-up services to families separated by ocean from the urban center specialists, and discuss the satisfaction of families provided with outreach services. 3.Describe the informational content, usability and literacy demands of websites offering health-related genetic tests directly to consumers, and evaluate the implications of these findings for health-related decision-making.

CE Credits: Medical (CME), Health Education (CHES), Nursing (CNE), Public Health (CPH)