The CCGPP used this fusion of participatory democracy and community-based participatory research to develop a set of recommended policies to guide the use and application of genetic knowledge in ways that would avoid harms and maximize benefits for communities of color. The project sought to engage African American and Latino communities of diverse socioeconomic levels in the process of community-based dialogue on moral and political issues relating to genomic research and technology.
The project consisted of a series of linked phases to: (1) identify community-based organization partners that would convene the dialogue groups; (2) recruit the participants in the dialogues; (3) convene focus groups to identify issues of concern from their communities; (4) develop education- and issues-oriented materials relating to the topics; (5) train dialogue facilitators; (6) convene the community-based dialogues to select issues of concern to the groups and carry out a series of dialogue sessions; (7) analyze the output of the dialogue and identify the common themes and recommendations of the fifteen groups; and (8) disseminate the findings of the project, including convening policy meetings at the state and federal levels (see ).
Communities of Color and Genetics Policy Project: Dialogue and Dissemination Framework
Two hundred and thirty-eight individuals participated in the dialogues. The dialogue sessions were held in seven different geographic areas in two states (Michigan and Alabama) over a seven-month period, from November 1999 to June 2000. Half of the ten African American dialogue groups were based in Tuskegee, Alabama; two in Flint, Michigan; two in East Lansing, Michigan; and one in Ann Arbor, Michigan. Due to demographics (three major Michigan cities >10 percent Latino; Tuskegee, 0.7 percent Latino), all five of the Latino dialogue groups were held in Michigan, with two in Grand Rapids, one in Saginaw, one in Lansing, and one in Ann Arbor. Each of the dialogue groups met for a total of six two-hour sessions (five theme-driven plus one recommendation summation session). The sessions took place independently of any other preexisting organizational activities. Compensation of participants varied by organization, with some groups offering stipends (range: $25–125); others, meals. The median sex ratio of the Michigan African American groups was 47 percent male to 53 percent female. The Tuskegee groups were all predominantly female, with the sex ratio varying from 0 percent male/100 percent female to 35 per cent male/65 percent female. The majority of participants in all but five of the fifteen dialogue groups reported a household income of $45,000 or less per year (Singer et al. 2001
: 4). (See , for a more detailed description of the demographics of each dialogue group.)
The CCGPP research team was diverse by discipline, gender, race, and ethnicity. The team included both African American and Latino researchers in key roles in the project. The project involved investigators from three different research universities, all of which had collaborated in the former “Genome Technology and Reproduction” genetics policy project — the University of Michigan, Michigan State University, and Tuskegee University — the latter a historically black university. Bringing a diverse group of ethics researchers, social scientists, and experts in the field of genetics together to analyze the outcomes of the dialogue process and policy consensus processes was important to achieving the project aims.
The project also established a national advisory board of experts with diverse backgrounds and disciplinary perspectives, including expertise in community dialogue, issues of race and genetics, and bioethics. Two joint meetings of this National Advisory Board (NAB) and the Community Advisory Board (CAB) were held for the research team to draw upon input from both. The NAB included representatives from the Hastings Center for Bioethics, the Division of Community and Minority Programs of the Association of American Medical Colleges, and the National Conference of State Legislatures, among others.
The Role of Community-Based Organizations
Community-based organizations in communities of color can raise the awareness of their constituents and the larger community to public policy issues. CBOs serve as what Robnett (1997)
refers to as “bridge organizations,” intermediaries between rank-and-file members of their organizations and the larger community on the one hand, and external actors (e.g., researchers, policy makers) who are not indigenous to the communities where the research activity is taking place.
A critical element in the design and implementation of the CCGPP was the role played by fifteen preexisting community-based organizations (ten African American CBOs; five Latino — see ) who partnered with the academic team of researchers. The groups convened by CBOs included affiliates of national service organizations (fraternal and advocacy organizations, such as the National Urban League), local community service organizations (support groups, advocacy groups, and health organizations, such as the Tuskegee Support Group of Individuals with Disabilities and Clinica Santa Maria of the St. Mary’s Mercy Medical System), and faith-based organizations (churches and faith-based service agencies, such as Bethel AME Church and Flint Faith Access to Community Economic Development). Project faculty of the three universities had previously established relationships with these CBOs. The Detroit Urban Research Center (URC) was also helpful in the CBO identifying process. CBOs were each offered $5,000 from principal project funding and the chance to create recommendations that would be passed directly to policy makers and the public.
The CBOs were represented collectively by the project’s Community Advisory Board (CAB), a group that proved to be at least as important to securing the project’s desired outcomes as the academic research team itself. As describes, the CAB was established as an organized group composed of a representative of each of the organizations that participated in the project. It served as a liaison between the project team and the CBOs. The CAB consisted of a group of people reflecting diversity of background, social status, and educational level. CBOs were asked to choose for themselves the representative to attend and one alternate. Some representatives held high-ranking positions in their organizations. Others were members who did not hold any formal leadership roles.
Community-Based Genetics Participatory Research Partnership
Even though most of the CAB representatives were otherwise employed full time, they were expected to carry out a number of responsibilities as partners in the study. These included participating in project team meetings, relaying concerns and pertinent information between the project team and the CBOs, developing recruitment strategies to ensure the participation of CBO members in the dialogue sessions, reviewing proposed educational materials and draft reports, and participating in the writing of dialogue summaries and project reports intended for dissemination. CAB representatives received a modest compensation for their involvement in this project.
Being knowledgeable about the needs and characteristics of the communities they served, CAB leaders were invaluable in helping to shape the design of the project to assure the acceptability of the dialogue process by community members. For example, the community-based organizations in Tuskegee proposed that the research team first hold informal sessions with CBO members. This allowed a member of the project team (usually the project director) to describe the project and propose opportunities for collaboration. More importantly, it allowed the CBO members to have a face-to-face meeting with one of the lead investigators of the project before the design of the project was finalized. CBOs were thus able to emphasize to their constituents that the project was “owned” mutually, in terms of design, conduct, and outcomes, by the community and its academic partners rather than being carried out on the community by the universities.
Recruitment and Project Implementation
Recruiting by investigators can lead to less commitment on the part of those contacted, and less success in participant enrollment, than recruitment efforts from within the community. The advantages of utilizing CBOs in participant recruiting are several: (1) CBOs are recognized by their membership as having the members’ true interests in mind; (2) CBOs can recommend changes to make community projects relevant to the community’s interests; and (3) they have an established membership network that can facilitate recruiting. For the CCGPP, CAB leaders (CBO spokespeople serving as project Community Advisory Board members) were critical in successful recruiting of African American and Latino participants, each applying their own individual stamp to how recruiting was conducted. CAB leaders attended church meetings, contacted community colleges, made phone calls, distributed written materials, broadcast via media and the Internet, and invited groups to restaurants with culturally oriented cooking to describe the project. CAB leaders were also responsible for choosing dialogue sites (e.g., the CBOs’ meeting places and organizational spaces, churches, community organizational facilities) and timing along with deciding on provision of food, transportation, and child care.
CAB members worked in tandem with the research team to select facilitators, many coming from within the community. Criteria for selecting facilitators (language fluency, influence in the community, conversational flexibility) were provided by CAB members at their second meeting. Creation of facilitators’ guides was a collaborative effort between the research team and CAB members, resulting in guides of reasonable length that gave discretion to facilitators in the directions they chose for dialogue. CAB members simplified the educational materials used and brought in material from news and popular magazines. Restructuring the facilitator’s guide format and revising the project’s educational materials were viewed by CAB members as good examples of how their input was incorporated (Caldwell 2000
Topics chosen for dialogue discussion were a melding of themes decided on by the dialogue groups, by the recommendations of the preceding focus groups from the same communities, and the research team. Recognizing their responsibility to constituents, CBOs worked with their academic partners to assure that written materials emerging from the project accurately reflected the voices of the community rather than being diluted through translation. When the dialogues were finished, each dialogue group with its facilitator wrote a report of the areas it covered and its recommendations. CAB members chose coauthors from within their ranks and, together with the project team, consolidated the group reports into two collective pieces — an interim Grid Report (CCGPP 2000a
) and a final Summary Dialogue Report — reformulating the latter into position papers for policy makers (CCGPP 2001
). Policy recommendations covered seven topic areas: access to genetic testing and services; education; playing God and creating perfect children; the right to genetic privacy; genetic research; genetic testing; and trust and distrust. To assure faithfulness to what was verbalized in the dialogues, dialogue participants helped formulate recommendations and wording at each stage (CCGPP 2000b