186460 Consumer Genetics Education Network (CGEN): Lessons Learned in the Participatory Development of Culturally Appropriate Interventions

Tuesday, October 28, 2008: 9:06 AM

Aida L. Giachello, PhD , Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, IL
Jose O. Arrom, MA , Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, IL
Diane M. Ashton, MD, MPH , Office of the Medical Director, March of Dimes, White Plains, NY
Diane Gross, MPH , Office of the Medical Director, March of Dimes Foundation, White Plains, NY
EmyLou S. Rodriguez, BA , March of Dimes National Office, White Plains, NY
Julie Solomon, PhD , J. Solomon Consulting, LLC, Mountain View, CA
Penny Kyler, ScD, OTR, FAOTA , Genetics Services Branch, MCHB, HRSA/DHHS, Rockville, MD
Ann Umemoto, MPH, MPA , March of Dimes, White Plains, NY
Objectives: To share challenges and lessons learned related to a multi-site project that develops, tests, and disseminates culturally-appropriate consumer genetic education materials and interventions. Background: With genetics advances, there is new information crucial for early detection of and intervention related to genetic conditions. Disadvantaged racial and ethnic minority communities are not benefiting from these advances. In 2005, the Health Resources and Services Administration funded a cooperative agreement with the March of Dimes (MOD), who engaged four local partners targeting African Americans, Latinos/Dominicans, Chinese, Koreans, and Pacific Islanders. Outcomes are to increase: (1) genetic literacy allowing people to make informed health and genetics-related decisions; (2) access to and use of culturally appropriate programs; and, (3) health risk-reducing lifestyle changes. Methods: This project is guided by a participatory approach that calls for active and meaningful participation among national partners, local CGEN staff, consumers, and community-based organizations as well as a commitment to cultural, linguistic and health literacy appropriateness. Startup program activities, relationships between partners and communities, and other developmental factors were assessed. Data sources were progress reports, minutes, observations, e-mails, and qualitative interview transcriptions. Results: Collaborations that develop genetics education programs offer unique opportunities and challenges. Some sites progressed rapidly because of their readiness (community access, knowledge, experience and skills). Others faced delays related to developing new partners and responding to community input. MOD facilitated communication, technical support, training, and other mechanisms. Conclusions: Detailed upfront group planning with logic models may minimize “surprises” related to participatory processes, translation and cultural adaptation.

Learning Objectives:
List the unique opportunities and challenges in developing consumer genetics educational programs following community-based participatory approaches. Identify challenges in establishing a multi-site genetic education collaborative with local organizations targeting vulnerable populations. Share best practices and lessons learned about program and product development activities and processes.

Keywords: Cultural Competency, Participatory Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the Principle Evaluator on this project, funded by the USDHHS Health Systems Resources Administration.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.