"Genetic Education for Native Americans" (GENA®) Tailored Workshops

    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:

    • You review the list of objectives and estimated time for each for your desired workshop.
    • You select the objectives most relevant to your audience for the designated time period.
    • The GENA faculty will create and evaluate (using ARS) the tailored workshop.
    • The workshop will be held at your location.
    • Most workshops are 3-5 hours long and may have up to 50 participants.
    • At least two faculty (one scientist and one cultural specialist) will present the workshop.

      NOTE:
      1. Workshops need to be scheduled about 6 months ahead of time.
      2. Travel and per diem need to be supported for both GENA® Faculty.

    OBJECTIVES

    1. Examine selected Native American cultural / political issues. [10 minutes]
    2. Review basic principles of cell biology and genetics [e.g., cell structure, location of DNA and RNA, protein expression, transcription, and translation] [45 minutes]
    3. Examine examples of ethical, legal and social implications humanity faces in genomic research. [50 minutes]
    4. Examine special concerns of indigenous people [40 minutes]
    5. Identify the types of genetic research that are of interest / priority to their home Native communities [45 minutes]
    6. Identify current scientific, cultural, ethical, social and legal resources to clarify the patenting process [45 minutes]
    7. Review genetic concepts. [45 minutes]
    8. Understand classical patterns of inheritance and cultural traditions related to these patterns. [60 minutes]
    9. Describe genetic testing. [30 minutes]
    10. Examine selected Native American cultural and ethical issues related to genetic testing [60 minutes]
    11. Identify common misconceptions related to genetic testing. [30 minutes]
    12. Analyze the benefits and risks of genetic testing. [30 minutes]
    13. Determine factors that should be considered when deciding whether or not to take part in genetic testing. [10 minutes]
    14. Examine current genetic research-related issues and their potential impact for Native communities. [60 minutes]
    15. Understand the NIH "Human Genome Project" [50 minutes]
    16. Describes benefits and drawbacks to pharmacogenetics [60 minutes]
    17. Examine current botanical genomic research [30 minutes] no longer offered
    18. Examine Native American cultural issues that are related to contemporary genetic research. [30 minutes] currently combined with objective 29
    19. Analyze the Tribal Research Approval Process relevant to genetic research. [60 minutes]
    20. Describe guidelines and ways that future genetic research could be conducted to be culturally respectful and allow for informed decision making by Indian communities. [30 minutes]
    21. Recognize the roles of the health care team involved with cancer genetic counseling. [20 minutes]
    22. Describe culturally acceptable methods of collecting a family history. [45 minutes]
    23. Examine selected ethical, legal, and cultural issues of genetic counseling [30 minutes]
    24. Describe how other Native and Latino / Chicano / Hispanic scientists have addressed challenges in their education; careers; and family life. [video]
    25. Identify advantages and limitations of selected models for human diseases. [60 minutes]
    26. Describe parts of a cell [45 minutes]
    27. Describe components of the NHGRI HapMap Project. [2 hours] no longer offered
    28. Describe potential benefits and drawbacks regarding tribal Nations' participation in the HapMap Project.[45 minutes]. no longer offered
    29. Distinguish between facts and myths of genetic issues of concern to Natives. [60 minutes]

    GENA overview

    There are many reasons why Native communities are resistant to taking part in research studies. These include, but are not limited to:

    • Native people do not want to be "guinea pigs" (i.e., people have been used in studies without appropriate informed consent processes);
    • the study findings are rarely shared with the Native communities that participated in the study;
    • the study findings rarely improve local services for the Native community;
    • the promised study benefits rarely reach the Native community; and
    • insufficient access to resources to allow community members to participate in the study (e.g., transportation).[i] [ii] There is also a history of Natives being lied to and included in studies without informed consent and is the Native's equivalency to African-American's Tuskegee Study. The most recent example is the forced sterilization of American Indian women in the 1970's. [iii] [iv] [v] [vi] [vii] [viii] [ix] [x] [xi]

    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.