CTENA provides easy-to-understand, interactive educational workshops to increase Native Americans’ awareness and understanding of clinical trials and to facilitate decision making about clinical trials participation. The curriculum includes twelve
objectives. These workshops have been held in geographically diverse settings with intertribal participants (e.g., Anchorage, AK, Albuquerque, NM, Denver, CO, and Rapid City, SD). The average increase in knowledge was 25%. Each objective
includes a participant interactive activity:
- NA-1. Examine common reasons for and against Native American communities’ participation in research studies. (30 minutes)
- NA-2. Describe the importance of including Native Americans in cancer care trials. (30 minutes)
- NA-3. State the purpose and importance of clinical trials. (30 minutes)
- NA-4. Describe the types and purposes of cancer clinical trials. (45 minutes)
- NA-5. Explain the phases of cancer clinical trials. (45 minutes)
- NA-6. Examine common Native American myths and beliefs related to cancer clinical trials. (30 minutes)
- NA-7. Identify local and national resources for accurate cancer and clinical trials information. (30 minutes)
- NA-8. Examine the potential benefits and drawbacks of participation in cancer treatment clinical trials. (30 minutes)
- NA-9. Describe the impact of Native cultural perspectives on health and the experience of cancer and clinical trials. (45 minutes)
- NA-10. Examine selected ethical, social, cultural, spiritual and legal issues related to Native American's participation in clinical trials. (45 minutes)
- NA-11. Describe benefits and drawbacks in using traditional Indian medicine in cancer care. (30 minutes)
- NA-12. Identify the Tribal Research Approval Process relevant to clinical trials. (60 minutes)
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 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.
NACR staff and consultants (Linda B and Lynne Bemis, PhD) 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
- Distinguish between facts and myths of genetic issues of concern to Natives. (60 minutes)
BASICS
- Describe parts of a cell (45 minutes)
- Review basic principles of cell biology and genetics (e.g., cell structure, location of DNA and RNA, protein expression, transcription, and translation) (45 minutes)
- Identify the types of genetic research that are of interest / priority to their home Native communities (45 minutes)
- Review genetic concepts. (45 minutes)
- Understand classical patterns of inheritance and cultural traditions related to these patterns. (60 minutes)
GENETIC TESTING
- Describe genetic testing. (30 minutes)
- Examine selected Native American cultural and ethical issues related to genetic testing (60 minutes)
- Identify common misconceptions related to genetic testing. (30 minutes)
- Analyze the benefits and risks of genetic testing. (30 minutes)
- Determine factors that should be considered when deciding whether or not to take part in genetic testing. (10 minutes)
CONTEMPORARY SCIENCE
- 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)
- Describes benefits and drawbacks to pharmacogenetics (60 minutes)
- Identify advantages and limitations of selected models for human diseases. (60 minutes)
TRIBAL RESEARCH APPROVAL PROCESSES
- Analyze the Tribal Research Approval Process relevant to genetic research. (60 minutes)
GENETIC COUNSELING
- Recognize the roles of the health care team involved with cancer genetic counseling. (20 minutes)
- Describe culturally acceptable methods of collecting a family history. (45 minutes)
- Examine selected ethical, legal, and cultural issues of genetic counseling (30 minutes)
Tailored Workshops Faculty
- Linda Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI)
- Lynne Bemis, PhD, University of Minnesota
Contact Information:
- Native American Cancer Initiatives, Incorporated (NACI)
- 3022 South Nova Road
- Pine, CO 80470-7830
- 303-550-5181
National genetic education leaders (videos); Advise from Experts
- In 1999-2000, Native American Cancer Research Corporation videotaped ten scientists; 8 were Indigenous and 2 were Latino, Hispanic or Chicano:
- John Alderete, PhD, Chicano
- David Baines, MD - Tlingit & Tsimshian Alaska Native Tribal Nations
- David Burgess, PhD - Western Cherokee Nation
- Alicia Carson, BS, Graduate student, Creek Tribal Nation
- Wilfred Denetclaw, Jr., PhD, Navajo Nation
- Frank C. Dukepoo, PhD, Hopi and Laguna Tribal Nations (1943-1999)
- Judith Salmon Kaur, MD, Choctaw and Cherokee Nation
- Clifton Poodry, PhD, Seneca Nation
- Tachene Scott, PhD, Navajo Nation
- Maggie Werner Washburn, PhD, Hispanic
Each was asked the following questions:
- Introduction
- In general, how and/or why did you become interested in your current career?
- How has being a minority affected your professional experience?
- On the average, how many hours do you work a week?
- How do you balance your professional and personal life?
- What characteristics of your current position do you continue to find exciting and rewarding?
- What aspects of your current position do you find unexciting and unappealing?
- How does your job help society, under-served populations and/or your community?
- How has your culture helped you in your current career?
- How has your culture created challenges for you?
- Have you ever seriously considered terminating your education, or dropping out of school?
- What types of science careers do you feel are going to be in great demand in the next 20 years?
- What types of jobs would you recommend university students have while enrolled in school?
- What recommendations do you have for university minority science students?
Their advice remains relevant to university students today.
- If the viewer is interested in one individual only, select search for their name and you can review all of their answers to the questions
- If the viewer is interested in responses to a specific question, search for key phrases within the questions.
- Linda B apologizes for the poor quality of the videos. They were saved as Flash software and did not convert well.
Background for GENA
- 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
This workshop is designed for public health professionals, Native program directors and staff who are working with health and cancer prevention / early detection programs. The overarching goals of this 6.5 hour training are: (1) To educate
public health professionals on the initial steps in building tribal and government relationships to improve health outcomes for Native American populations; (2) To educate public health professionals in building relationships with tribal
and urban programs to improve interactions and communications related to health and health outcomes for Native American populations; and (3) To increase understanding of successful and effective AIAN cancer public health program planning,
implementation and evaluation. Participants will develop skills in culturally respectful strategies for effective working relationships between (1) Native health programs and (2) state public health programs, academic or clinical health
settings; modifying evidence-based interventions, understanding AIAN learning styles, and working with electronic evaluation programs. Sessions will include interactive activities and problem-solving exercises focused on specific challenges
and solutions. It is helpful to have completed Cultural Competence 101 prior to enrolling in this training. The objectives follow:
- Objective A. Identify communication methods and literacy issues that affect interactions among providers, patients, public health educators and AIAN community members (90 minutes).
- Objective B. Identify how styles of learning and educational programs can facilitate communication for Native American community (60 minutes).
- Objective C. Identify selected issues in NDN Country that affect successful cancer program implementation (120 minutes)
- Objective D. Identify characteristics of scientific evidence interventions that affect the ability to appropriately translate science within AIAN communities (60 minutes).
- Objective E. Identify ways technology can improve the evaluation of the success and effectiveness of AIAN public health programs (60 minutes).