Partnering genetics: Process-outcome linkages in the NHGRI-sponsored Midwest Community Genetics Forum

In October 2007, 519 community participants gathered in 5 states (IL, IA, MI, MN, MO) for the National Human Genome Research Institute-sponsored Midwest Community Genetics Forum orchestrated by the University of Michigan and the National Community Committee (NCC). 44.7% of participants were African American; 11.7% Latino; 4.5% Native American. 38.7% had 12 years of education or less. Format contained a mixed balance of educational presentations and open dialogue. States experienced both individualized and simultaneously shared, video-conferenced sessions. Planning and recruiting were conducted by NCC leaders affiliated with each state's Centers for Disease Control and Prevention (CDC) Prevention Research Center via community-based organizational networks, and state library systems. NCC representatives selected the topics and national / local speakers preferred by community members, and hosted the Forums plus preliminary events. State planning of speakers and topics had a positive effect on plenary session ratings, with 70.7% of Michigan and 66.0% of Minnesota respondents strongly agreeing their plenary session (Racial and Ethnic Health Disparities, and Genetics and Behavior, respectively) was valuable. The presence of keynote speakers on site and NCC selection of local speakers contributed positively, whereas viewing of videotaped sessions contributed negatively to audience engagement and session appreciation. 20-36% more respondents showed participatory interest in a national gene-environment study and in collection of family health histories, respectively, than in a general genomics research study (p<.05). 83.3% of NCC representatives strongly agreed Forum decision-making was equally shared. Community participation is crucial to balanced and vocal representation, and unbiased outcomes in genomics dialogues.