3245.0: Monday, October 22, 2001: 8:30 PM-10:00 PM

Oral Session

Engaging Communities of Color in Genetics Policy-Making

OVERVIEW OF RATIONALE: As genetics knowledge and technology rapidly expand there is increasing need for sound, equitable policy-making to assure that the potential benefits of genetics are realized while harms to individuals and groups are avoided. Communities of Color have special cause to be concerned about genetics policies in view of the potential for stigmatization and discrimination, the legacy of Tuskegee, issues of equitable access and the underrepresentation of persons of color among those guiding genetics research and the application of genetics technology. The University of Michigan, in collaboration with Michigan State University and Tuskegee University, are about to conclude an NIH-funded research project in which 15 African American and Latino community-based organizations have hosted dialogue sessions engaging their constituents, congregants and community residents in a series of focus groups and dialogue sessions. The project has demonstrated successful methods of engaging a broad spectrum of these communities in learning about genetics and voicing their views on desirable genetics policies. This session will explore the history which makes community engagement essential, the process used to elicit engagement, findings drawn from the project’s focus groups and dialogues, and the effectiveness of this approach to shape policy through community-driven participatory democracy.
See individual abstracts for presenting author's disclosure statement.
Learning Objectives: Refer to the individual abstracts for learning objectives
Facilitator(s):Toby Citrin, JD
8:30 PM"What are they going to do with the information?":Communities of Color Reflect on the Human Genome Project
Amy Schulz, PhD, Cleopatra Caldwell, PhD, Sarah Foster, MPH
8:45 PMFacilitator Interaction with African American and Latino Community-Based Organizations in the Dialogue Process
Tene' N. Hamilton, MS, Marian Gray Secundy, PhD
9:00 PMEvaluating process in multicultural dialogues on genetic policymaking
Stephen M. Modell, MD, MS, Eleanor Singer, PhD, Toni C. Antonucci, PhD, MA
9:15 PMCommunity engagement and coalition building
E Yvonne Lewis, Gloria Stevens Smith, PhD, Daniel Soza, Caroline Guzman, PhD
9:30 PMInclusion of Communities of Color in Policy-Making: Implications for Participatory Democracy
Vence L. Bonham, JD
Sponsor:Community-Based Public Health Caucus
Cosponsors:Black Caucus of Health Workers; Caucus on Refugee and Immigrant Health; Latino Caucus; Occupational Health and Safety; Social Work; Socialist Caucus
CE Credits:Health Education (CHES), Nursing, Pharmacy, Social Work

The 129th Annual Meeting of APHA