Project Title: Hispanic/Latino Genetics Community Consultation Network (HLGCCN) (Distributed through the Texas Cancer Genetics Consortium parent grant)

Abstract:

Despite decades of remarkable advances in basic science research in human genetics, the public is generally unaware of, or at best wary of, the crucial role they play in genetics research. To increase participation in clinical genetics research among Latino citizens, we propose to conduct a series of “community consultations” to identify, discuss and report critical issues in genetics that confront Hispanic/Latino populations. This supplemental funding request would support the first in a series of community consultations that would bring together key opinion leaders in the Hispanic/Latino community to explore genetics issues. Acting as a pilot for the overall process (Phase 1), the first consultation was held in Washington D.C. in June 2003 and brought together 75 regional and national representatives in Latino communities. Based on the success of this first consultation, 5 other consultations (Phase 2) will be conducted in major Latino population centers across the U.S. The goal of Phase 2 would be to construct a solid picture of genetics and Hispanics/Latinos while accounting for differences in region, country of origin (e.g., Mexican-American versus Puerto Rican perceptions), years of U.S. citizenship, and other variations among the multifaceted U.S. Hispanic/Latino population concerning genetics. 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 is a succinct but broad-reaching report that can be shared with all stakeholders, especially policy makers at local, state and federal levels.

PI:

  • Amelie G. Ramirez, DrPH, Professor of Medicine and Deputy Director of the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine

Funding Institution:

  • The National Institute of General Medical Sciences (NIGMS)
  • National Human Genome Research Institute (NHGRI)
  • National Cancer Institute (NCI)
    • Center to Reduce Cancer Health Disparities (CRCHD), Special Populations Network (SPN)
    • Specialized Program of Research Excellence (SPORE)
    • Cancer Genetics Network (CGN), Texas Cancer Genetics Consortium

Funding Period:

1 yr. – 2002-2003

Location/Service Area:

Hispanic/Latino populations across the United States

Collaborators/Co-sponsors:

University of Maryland, Public Health Informatics Laboratory

Goals:

To pilot test a participatory model of community consultation among a sample of representatives of U.S. Hispanics/Latinos to identify, prioritize, and disseminate information on genetics issues.

Results (the following represent summaries of the top recommendations and strategies):

RESEARCH

  • No. 1 Recommendation: Identify priorities for research among Hispanic/Latino populations, attract and develop more Latino genetic researchers and others to work with Hispanic/Latino populations, and promote genetic research collaboration among Latino community members and scientists.
  • Strategy: Disseminate information about available genetic services at both the healthcare system and community-based levels.

HEALTHCARE SERVICES

  • 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 (healthcare or other professional).

PUBLIC EDUCATION AND OUTREACH

  • No. 1 Recommendation: Develop bilingual/bicultural genetic education resources for use in elementary, high school and college, as well as non-traditional community settings.
  • Strategy: Prioritize age group for developing first series of genetic education materials and utilize the participatory model to develop educational modules.

Potential Impact:

This project could potentially increase the number of Hispanics/Latinos participating in clinical genetic research. Additionally, the study will increase the knowledge of the Hispanic/Latino community’s research priorities, ethical issues significant to Hispanics/Latinos, and needs and opportunities for fostering education and training in research.

Publications:

  • 2003 Hispanic/Latino Genetics Community Consultation Summit Event Report.
  • HLGCCN Scientific Proceedings Report (pending).
  • Final Project Report (distributed to sponsors only).