Successful Implementation of Genetic Education for Native Americans Workshops at National Conferences
Dignan, Mark B., Burhansstipanov, Linda, Bemis, Lynne, Genetics
Genetic Education for Native Americans (GENA) was a National Human Genome Research Institute (NHGRI)/Ethical, Legal, and Social Implications (ELSI)-funded educational intervention designed to provide a unique genetics education program for Native American college and university students. A curriculum was developed and implemented in workshops in geographically diverse settings throughout the United States, primarily in conjunction with regional and national scientific conferences that include substantial numbers of Native American attendees. The original curriculum includes 24 objectives and has been offered in two formats, as a 16-hr "comprehensive" program and in briefer workshops (referred to as "customized" hereafter) that are designed to include objectives for selected audiences. Both formats teach sufficient genetics to allow discussion and understanding of the ELSI and cultural issues related to genetics science. This article describes the evaluation findings from our implementation of both formats of the GENA curriculum.
GENETIC Education for Native Americans (GENA; NHGRI R25 HG01866) was a 4-year project funded in 1998 by the Ethical, Legal, and Social Implications (ELSI) research program of the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH). The goal of GENA was to provide culturally sensitive genetics instruction to Native Americans to increase their awareness of genetics as a topic. This would include an understanding of genetics research and testing and careers in the field of genetics. As an overall goal, it was designed to help improve informed decision making about genetics and genetics research in Native American communities. Genetics has been a controversial issue among Native Americans during the past 20 years. The controversy was initially due to the lack of a sufficient informed consent process for the International Human Genome Diversity Project. Subsequent issues include, but are not limited to genetics research and tribal sovereignty, patenting of Native intellectual knowledge, storage of genetic specimens, and sharing of genetic specimens without tribal notification (BURHANSSTIPANOV et al. 2001a,b, 2002).
The primary target population for GENA instruction was Native American college and university students. The decision to focus on students was based on recommendations from intertribal leaders on how to effectively integrate genetics education into Native American communities (BURHANSSTIPANOV et al 2001a,b). The primary product from GENA was a culturally relevant and acceptable curriculum for teaching genetics to Native Americans. Development and implementation of the curriculum has been described previously (BuRHANSSTIPANOV et al. 2001b, 2002). The original curriculum included 24 objectives and recommended specific teaching methods. The teaching methods were developed to emphasize interactive learning, hands-on participation of students, and extensive interactions with faculty. The GENA curriculum is taught by teams that usually include two members: at least one with substantial expertise in genetics and the other with cultural and scientific training. GENA is provided in workshops that are carried out in conjunction with scientific and cultural meetings that include large numbers of Native American students. The workshops are provided in two formats: as "customized" 3- to 5-hr events or as "comprehensive" 16-hr events. The customized workshops are designed to provide instruction that is limited to specific GENA objectives. The objectives are selected to tailor the workshop to the needs of the audience. The comprehensive 16-hr events, on the other hand, include instruction for all 24 of the original GENA objectives. Table 1 shows the original 24 objectives that are included in GENA, as well as 5 objectives added since the grant officially ended.
MATERIALS AND METHODS
The GENA curriculum: Curriculum development for GENA included focus groups, extensive review of available curricula, and collection of information about genetics career opportunities (BURHANSSTIPANOV et al. …