The public is generally unaware of the crucial role in basic science research in human genetics, so the Hispanic/Latino Genetics Community Consultation Network (HLGCCN) is the first in a series of community consultations that bring together key Hispanic/Latino opinion leaders to explore genetics issues, funded as a supplement through the Texas Cancer Genetics Consortium parent grant.
Amelie G. Ramirez, DrPH
IHPR, The University of Texas Health Science Center at San Antonio (at Baylor College of Medicine for this project)
University of Maryland, Public Health Informatics Laboratory
The first consultation (Phase 1) was held in Washington, D.C., for 75 representatives. This consultation will serve as a base for five other consultations (Phase 2) throughout the U.S. to create a picture of Hispanic/Latino genetics while accounting for differences in region, country of origin, years of U.S. citizenship, and other variations. The first pilot consultation (Phase 1) followed a systematic process of social assessment, which encourages multi-stage input from all participants, processes that input comprehensively and integrates that information into consensus building, cognitive exercises, and prioritization activities. The final product was a succinct but broad-reaching report that can be shared with all stakeholders, especially policy makers at local, state and federal levels. It had these recommendations in these four areas:
No. 1 Recommendation: Identify priorities for research among Hispanic/Latino populations, attract and develop more Latino genetic researchers to work with Hispanic/Latino populations, and promote genetic research collaboration among Latino community members and scientists. Strategy: Convene a multidisciplinary conference on Latinos and genetic research.
No. 1 Recommendation: Improve accessibility to and maximize Hispanic/Latino use of available resources in genetic services within current healthcare systems. Strategy: Disseminate information about available genetic services at both the healthcare system and community-based levels.
PROFESSIONAL EDUCATION AND TRAINING
No. 1 Recommendation: Increase representation and recruitment of healthcare practitioners and researchers in genetics who serve Hispanic/Latino populations. Strategy: Provide genetics training to any interested professional serving Hispanic/Latino communities in the workplace.
PUBLIC EDUCATION AND OUTREACH
No. 1 Recommendation: Develop bilingual/bicultural genetic education resources for use in elementary, high school, college, and non-traditional community settings. Strategy: Prioritize age groups for developing first series of genetic education materials and utilize the participatory model to develop educational modules. In all, this project has the potential to increase the number of Hispanics/Latinos participating in clinical genetic research and increase the knowledge of the Hispanic/Latino community’s research priorities, ethical issues, and needs and opportunities for fostering education and training in research.
Ramirez, AG, & Gomez, J. Genetics and Latinos: proceedings of a national summit. 2005. Cancer Research, 65, 8, 2996.