"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
  • 303-550-5181

National genetic education leaders (videos)

  • “Speakers” (http://www.natamcancerinitiatives.org/GENA/speakers_video.html) 
  • “Topics” ((http://www.natamcancerinitiatives.org/GENA/topics.html) 

Background

  • 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
  • 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

Overview

  • GENA®, provides a Native-specific science curriculum originally comprised of 29 objectives
  • These objectives can be individually combined to create an educational program on genetic science that is tailored to a program’s 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
  • 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 averaged 30% and was statistically significant (p=.001) and received high praise from participants
  • Faculty continue to conduct an average of three GENA® tailored workshops each year throughout the USA
  • Although there originally were 29 objectives, over the last decade, some were combined together and others, were of no interest to I/T/U communities (e.g., 3 HapMap objectives); the subsequent 18 GENA® objectives grouped as commonly presented, follow:

ETHICAL, LEGAL, SOCIAL, CULTURAL ISSUES
Objective 29.    Distinguish between facts and myths of genetic issues of concern to Natives. (60 minutes)

BASICS
Objective 26.    Describe parts of a cell (45 minutes)
Objective 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)
Objective 5.    Identify the types of genetic research that are of interest / priority to their home Native communities (45 minutes)
Objective 7.    Review genetic concepts. (45 minutes)
Objective 8.    Understand classical patterns of inheritance and cultural traditions related to these patterns. (60 minutes)

GENETIC TESTING
Objective 9.    Describe genetic testing. (30 minutes)
Objective 10.    Examine selected Native American cultural and ethical issues related to genetic testing (60 minutes)
Objective 11.    Identify common misconceptions related to genetic testing. (30 minutes)
Objective 12.    Analyze the benefits and risks of genetic testing. (30 minutes)
Objective 13.    Determine factors that should be considered when deciding whether or not to take part in genetic testing. (10 minutes)

CONTEMPORARY SCIENCE
Objective 14.    Examine current genetic research-related issues and their potential impact for Native communities. This objective has 3 different versions:  stem cells, microRNA or nanotechnology (60 minutes each version)
Objective 16.    Describes benefits and drawbacks to pharmacogenetics (60 minutes)
Objective 25.    Identify advantages and limitations of selected models for human diseases. (60 minutes)

TRIBAL RESEARCH APPROVAL PROCESSES
Objective 19.    Analyze the Tribal Research Approval Process relevant to genetic research. (60 minutes)

GENETIC COUNSELING
Objective 21.    Recognize the roles of the health care team involved with cancer genetic counseling.  (20 minutes)
Objective 22.    Describe culturally acceptable methods of collecting a family history. (45 minutes)
Objective 23.    Examine selected ethical, legal, and cultural issues of genetic counseling (30 minutes)

To schedule Tailored GENA® workshops:

  • Please 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:

  • Workshops need to be scheduled about 6 months ahead of time
  • Travel, per diem and fee need to be supported for GENA® Faculty