Faculty
Linda Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI)
Lynne Bemis, PhD, University of Colorado Denver
Contact Information:
Native American Cancer Initiatives, Incorporated (NACI)
3022 South Nova Road
Pine, CO 80470-7830
303-838-9359; fax: 303-838-7629
Website: www.NatAmCancerInitiatives.org
"Genetic Education for Native Americans" (GENA®) [PI: Burhansstipanov, HG01866], more commonly known as "GENA®", provides a Native-specific science curriculum comprised of 29 objectives. These objectives can be individually combined to create an educational program on genetic science that is tailored to your specific needs. The focus of GENA is to help workshop participants increase their genetic knowledge to assist with informed decision-making regarding genetic science, testing, or research opportunities. The curriculum is neither "pro" nor "con" genetic science, but rather presents potential benefits, risks, and/or drawbacks. This is designed to help the participant weigh the information to make an informed choice regarding one's participation in genetic programs. All objectives include interactive participant exercises created to increase learning. GENA workshops have been evaluated for success with Native American college students and with selected intertribal community meetings from 1999 through 2003. The increase in genetic and cultural knowledge was statistically significant (p=.001) and received high praise from participants.
To schedule Tailored GENA® workshops:
OBJECTIVES
GENA overview
There are many reasons why Native communities are resistant to taking part in research studies. These include, but are not limited to:
The "National Human Genome Research Institute, Ethical, Legal and Social Issues" (NHGRI/ELSI) funded "Genetic Education for Native Americans" (GENA®) [PI: Burhansstipanov, HG01866] from 1998 to 2003. GENA® was designed to provide a unique genetics education program for Native American college and university students. The decision to focus on students was based on recommendations from intertribal leaders' on how to effectively integrate genetic education into Native American communities. [xii] Based upon multiple intertribal focus groups with tribal elders, the initial priority targets population of GENA® was Native college students. Tribal elders believed that these students would be able to return to their respective communities to help them understand genetic research requests from academic and clinical research settings. Ultimately, it was hoped that this instruction would help to improve informed decision-making about genetics and genetics research in Native American communities and to encourage students to seek genetic science career opportunities.
GENA® includes 29 objectives that require 3 days to include the entire curriculum. Communities and organizations that request GENA® workshops work with Drs. Burhansstipanov and Bemis (the co-investigators of the project) to select objectives that are most relevant to the local community or organization. Most workshops are 1.5 to 3 hours long and address 2 of the 29 objectives. Organizations such as the "Society for the Advancement of Chicanos and Native Americans in Science" (SACNAS) sponsor a 1.5-3 hour GENA® workshop as a preconference session each year.
GENA® was implemented in geographically diverse settings throughout the U.S., primarily in conjunction with regional and national scientific conferences that include substantial numbers of Native American attendees. The increase in knowledge from pre to post tests averaged 35%.
[i]. Burhansstipanov L, Christopher S, Schumacher A. Lessons Learned from Community-Based Participatory Research in Indian Country. Cancer Control: Journal of the Moffitt Cancer Center. November 2005; pp. 70-76.
[ii]. Burhansstipanov L. Developing Culturally Competent Community-Based Interventions. Chapter 14, included in Weiner D (eds.) Cancer Research Interventions among the Medically Underserved. Westport, CT: Greenwood Publishing, 1999. pp. 167-183.
[iii]. Staats, Elmer B. (1976). Investigation of Allegations Concerning Indian Health Service. U.S. General Accounting Office Report on Sterilization HRD-77-3 November 4, 1976. Washington, DC: General Accounting Office.
[iv]. Rodriguez-Trias, Helen. (1980). Women and the Health Care System: Sterilization Abuse: Two Lectures. (Oct 1980). New York: Barnard College.
[v]. American Indian Policy Review Commission's Report on Indian Health. (1977). American Indian Journal, 17-23.
[vi]. Carpio, Myla F. (1995). Lost Generation: the Involuntary Sterilization of American Indian Women. (Dissertation). Arizona State University Library.
[vii]. Dillingham Brint. (1977). American Indian Women and IHS Sterilization Practices. American Indian Journal, 3(7): 27-28.
[viii]. Hunter, Kathleen, Linn, Margaret and Stein, Shayna. (1983-1984). Sterilization Among American Indian and Chicano Mothers. International Quarterly of Community Health Education, 4(4): 343-353.
[ix]. Jarrell, Robin H. (1992). Native American Women and Forced Sterilization, 1973-1976. Caduceus: A Museum Quarterly for the Health Sciences, 8: 45-58.
[x]. Larson, Janet K. (1977). And Then There Were None: Is Federal Policy Endangering the American Indian Species? Christian Century, Jan: 61-63.
[xi]. Trombley, Stephen. (1988). The Right to Reproduce: a History of Coercive Sterilization. London: Weiden & Nicholson.
References
[xii]. Burhansstipanov L, Bemis LT, Dignan MB. Native American Cancer Education: Genetic and Cultural Issues. Journal of Cancer Education. 2001: 16: 142-145.